Hepatitis Forums
Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: sunrise on December 20, 2014, 12:19:11 am
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Hi warriors
Just hoping to compare results for everyone that has completed sovaldi, olysio combo without ribavirin or pega. My treatment is over Sunday and I'm hoping we all can see how the percentages of us get cured... Blessings Sunrise thank you
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Hi Sunrise
Dont worry about mine as it could have been better but you will be fine. I just have tough tiny little dragons.
GT 1a w cirrhosis diagnosed in Jan 08, prior 3 time null responder, relapsed after 12 weeks of Sov/Oly at the 12 week post treatment test Sept 14. No test done prior to 12 weeks
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Thanks for responding Lynn. I know you relapsed on s/o and thank goodness they have harvoni now. Im shocked though that you didn't do the 24 Week tx with s/o to begin with. You might not have relapsed!
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Thanks
Yes I agree, but at the time in March that was the protocol 12 weeks for all. It was just recently changed to 24 weeks for cirrhosis.
That was part of my reasoning with Accredo / Express Scripts was that had I treated for 24 I most likely would not have relapsed. They were denying Harvoni on the basis I had been a null/partial responder to a Sovaldi based treatment which was not accurate as I did respond immediately I just needed more time
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It kinda scares me for the fact I really do not want to go thru this again. I don't want to sound like a whiney baby, but for me it would be almost impossible to get harvoni. Seems like things are ramping up and support path is overwhelmed.
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Hey Sunrise,
We are all concerned wondering if our treatment is going to work and is it enough and and and.....
I can relate to you and Rubye being on S/O because I started with it and at that point it was only a 12 week protocol (like what they gave Lynn) even with F4 Cirrhosis and over 8 Million VL and I am sure I would have relapsed just like Lynn. I wasn't even UD until week 9 testing so my week 4 still showed that bastard inside of me.
I am praying for you, me, everyone who is on treatment to beat this nasty beast and just going to do my best to keep the faith that what they have approved and given us will be enough to do it. I am doing my best to focus on the positive. I can tell you that my mindset wasn't the same when I was on the S/O; that darn Olysio messed with me in so many ways including my Psychie.
I personally feel you really will start to feel more positive about a week after you stop taking the Olysio; it may be a dragon slayer but it was also a mood slayer for me.
I am dealing with my messed up approval for Harvoni and trying to figure out the best way to handle it without causing an issue on what is approved. It's not fun and it's not easy but we are all warriors in our own right and have made it this far.
We have new options coming and I will beat this thing even if I have to try and do it 10 times!
Mel
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Hi Mel and all warriors. yes this is the last day of my treatment and I know you're right now I gotta stop nitpicking on all the little issues that I'm worried about. I will go get my blood taken tomorrow. Then in a month and we shall see how things progress. I sure would like to see people come on here and tell us how they're doing after the 12 weeks.as well as the 24 week and the yearly checkup. I pray that more and more people are going to be cured from this nasty disease. Besides the joint stiffness I'm actually feeling pretty good. I can't believe the new year is almost here. I wish for everybody a very very Merry Christmas and a happy and healthy New Year... Sunrise PS I will be checking in with my progress. I don't know what I would have done without you guys thank you all so much.
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Hey Sunrise,
Don't beat yourself up, your reaction is so darn normal. I am sure I will be just as concerned as you when I get through this treatment and the waiting came starts.
I am going to push myself to write something positive every morning when I wake up post treatment so I focus on the positive as much as possible. Basically if I do get the entire 24 weeks of Harvoni I am supposed to get then I will get my SVR 24 in 46 weeks from now; that seems like decade in my brain right now.
The thing is that you are making me think about it and be aware so I can work on putting it into perspective before I get there so THANK YOU! I have time to come up with some ideas that will help me cope with the wait. I just feel like because of how sick I have been as will know very quickly if its back. I think my body will be very quick to tell me. I have learned so much about where my symptoms come from that it's going to be a bit tougher for it to hide from me this time. I also have my amazing doctor and if I am feeling bad I will just have him order a blood test for me. Honestly I am considering asking him to test me every 4 weeks just for peace of mind. Plus if it does somehow come back we will be able to jump right on it and get a new treatment going quickly.
I am not messing with the beast, this dragon will be slayed and I will do what I have to,
Sunrise, you have got this, you are strong and selfless and caring and did I say strong?
xoxoxoxo
Mel
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Thanks Mel
I appreciate any feedback. I guess it just frightens me when I hear about folks relapsing on this treatment. I know I should be positive. Just having a melancholy kinda weekend.
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Hi all, and its been a long time, since I had something to say! I recently went to another website forum (I know, be nice), and was incredibly disillusioned by what I read! I'm sorry, I'm very loyal by nature, but I was trying to get some information, and what I ended up reading was a bit disconcerting, anyways, so I was punished! But enough levity, or not! I just finished my twelve week voyage on S/O, and started to read about all kinds of side effects, both during and after, which I would imagine refers to "withdrawal"! First of all, it was one horror story after another. Did these people "all", not take, or remember the days of Interferon/Ribaviron? I remember sides that make these drugs feel like a Christmas Gift! Maybe they just never got their memories back. I am always questioning where I am at, as far as my cognitive abilities are concerned! The withdrawal question was addressed by so many as just an awful time! Is this really what is happening? What do you think the percentages are? Don't people as a rule, only give the negative side of things, anyways? I don't see too many news reports, on TV, Internet, or what have you...that don't revolve around something bad! Good news, just doesn't seem to be news worthy, I guess! Except for the fact that some of us would get a little bit of mileage off of good news rather than bad! I would like to hear some of the good reports as well! The problem about genuine information for all of us, has to do with the fact that we are so new into this "cure" situation, that we don't necessarily know what is real! The game keeps changing, which I admit is exciting, and beats the hell out of the old death sentence, or "crap shoot", as I always called it! For 12 long years, that's what I called it!
One more little tidbit, goes like this! People are writing descriptions of how they are feeling, using "god knows what" as a reference? I personally have no reference point to use! This has not only gone on in my body for 40 years or so, but I don't really know what feeling good is like...for sure, ...at least for me! I know that the last 12 years or so have been bad, and then worse! Then I worked my behind off, to secure the necessary drugs. I learned to be pro-active! I also give nothing but credit to my Hepatologist office. That goes for the entire team! I haven't had a team behind me since "Little League, Baseball"! It's cool, and they were so helpful! I did my homework, and they always made me feel as if they appreciated my candor, and my positivity, as well! You also don't get a team, unless its something serious! I hope my team never trades me!
Guys; unless you have some sort of incredible insurance policy, get it through your heads, that you might need to fight for these drugs! Don't give up, because there are a lot of things you can do to make it happen on your own, and with the correct help! They won't come to your door with three, or six bottles of "magic pills"! Get prepared to fight for your life, but, you will appreciate the feeling of accomplishment, when your first shipment of medication comes to your door! ; this my friends, is inner strength! A strength you might have not even realized you possessed! How cool is it to know that you just might have saved your own life! Use your inner strength! This virus in many ways make you strong, or, you can give up, and it kills you! I do have some days that I know are good, now! That my friends is "so &$@$# cool"!
Generally I would have to say, that my own experience on S/O have been very positive, and in no way a bad experience, when you consider the share power, strength, and toxicity of these drugs! They must be stronger (in a sense) then the old treatment, yet they treat us so much more humanely! No complaints here! I don't feel great, but I have some real decent days, and the last two days, have felt rather good, and I'm accomplishing some physical, as well as mental chores! Normally, after a little physical, the mental was nowhere to be drawn from! So after being off the S/O for 3 days, ... one day at a time, makes sense to me.
Find the good in everything! Recognize the good days! And if it helps, do what I do! Verbalize it! Say it out loud! "Damn, today was a good day", or, "that was a nice string of good hours"! Be observant, and honest to yourself! And if you have some nice positive things to say, then continue to write the positives in these forums! There are people having a rougher time than you, because they still need to know the good things! If we can help, then, lets tell them, and spread the positive vibrations! You haven't forgotten how to do that, have you?
Love you all, be well!
Roger
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Hi Roger
Well you gpt that right. I I hoped that I would never have to take the interferon or ribavirin treatment. I also feel very blessed that I was able to get this treatment without much problems at all. I have a great doctor who is caring enough to really get behind me and get me my treatment.I try to be positive. some days are tougher than others, but you are correct when you say we should be dancing with joy on being able to take these new treatments. let us know how you're after treatment results come out. Good luck and Merry Christmas
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Wow Roger,
That's telling it like you feel! I see a ton of positive in this forum and not so much complaining. I think the majority here are grateful for the treatments they are receiving after they fought for it. I see people sharing the different things they did to advocate for themselves, I see us lifting each other up when we have a not so great day.
Perhaps you should post that on the other forum you went to and maybe you will get through to someone there. I think negativity breeds negativity so perhaps that's what's happened over there and maybe your post would turn on a couple of light bulbs!
I see people posting their personal challenges and asking others if they have had the same type of challenge. For me that's been helpful, I attribute a ton of my challenges to be F4 and a really high viral load to start with. I was a sick girl before starting the S/O. Sad for me was that I had a pretty extreme allergic reaction to Olysio so that made it a little rough, even very strong medications couldn't stop the adverse reactions. I hung with it for 8 full weeks anyway while we tried different things to get the reaction under control. At 7 weeks my doctor basically said that is enough, you aren't sleeping, you can't function on a normal basis because you body is basically rejecting the Olysio and your body is getting scarred from this rash and we have to do something else. So together and even with some information from my fellow forum members we advocated and I was approved, denied and then approved again for Harvoni stopping the authorization on the wrong date so guess what, I will call and call and call and email each time I call until I get it fixed.
I can't say enough about how amazing Harvoni has been for me. Perhaps it's because my VL is actually UD at the start of it, perhaps it's because I am not putting something into my body daily that was causing a major allergic reaction, perhaps it's because after many years I am starting to feel human, whatever that is. I can say those hours that I am feeling good now are incredible and I cherish each second of them.
While I appreciate your post and the positives in it I do take offense to much of it insinuating that we are ungrateful, whiny people who aren't proactive in our own treatment. I personally see just the opposite here, yes maybe once in a while someone has a bad day and needs a kick in the butt (me included) but more often than not I see grateful honest people thrilled to be getting treatment and to have the support of each other.
Roger, perhaps you could say what you had to say in a more positive light without pointing fingers and it would be received differently.
Oh and today wasn't the best day but guess what, it's way better than it would have been if i was still on Olysio or having to take Interferon or RibV or even worse not getting treatment at all. I am absolutely grateful, I am in awe of the strength and support I see here. I am still confused about what you have been reading but I hope you will look for the positives when you read posts and not focus on the perception you have that we are negative.
Ok, now I am off my soapbox. I hope everyone has a wonderful evening and an even better tomorrow.
Mel
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Yeah Mel
I dont think we should take it personally. Although i didn't know if he was talking about me lol. We've all had our good and bad days. Thats why we are here. We need a sounding board. Lord knows I've had my days. Still do. Im glad you're here. No one but us fellow heppers understand, and I guess some even with it don't. Glad you are hhaving a good one
Just took my last dose!....Sunrise
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As far as negativity goes, I don't think it has anything to do with complaining or sharing or even whining about how we feel. I am a big whiner at times. I had a terrible time on Sovaldi and Olysio and shared much of what was difficult for me and in turn I got to hear from others with the same side effects and difficulties. This let me know I am not alone. Knowing I am not alone makes me feel better. Nothing negative about that. Why else would you come to a support forum if it was not to share the hard times as well as the good times? This sharing of self be it good or bad is what makes this forum work. Personally, I want to hear the hard times another person is having and hope that I can give them some support. Saying people are negative contributes nothing but ill will.
Personally, this was my first treatment and I've had Hep C for around 40 years and cirrhosis for over two years. I never treated with Interferon because I knew I would not be able to handle it. I think it is good to talk about our anxiety around whether or not we will reach SVR, better than holding it all inside anyway.
If nothing else, sharing the difficult lets us know we are not alone and I think that is a very good thing. There are times to be stoic but on a support forum there is no need for such stoicism.
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Well put Rubye
Today im not stoic and it is good to have emotional support
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About a month ago I was seeing one relapse after another on S/O and got pretty depressed about it, but for some reason I am feeling better now. I saw a video from the AASLD meeting where the doctors were talking about real-time stats with S/O and they were saying those with cirrhosis were being cured at 75-80%, while those without cirrhosis were more like 90%. Those are pretty good odds. Only time will tell but it is hard to not worry.
I recently started doing mindfulness meditations and it seems to be helping me with stress. If you're not familiar with mindfulness and are interested, here is a new beginner video --
https://www.youtube.com/watch?v=AKQAmtfra3k
Take care Sunrise. Take care Mel.
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I am just gonna send some hugs!
{{{{{{{{Rubye}}}}}}}}}}
Rubye: thank you for your calming influence on me!
{{{{{{{{Sunrise}}}}}}}}}}
Sunrise: you did it! you did it! Last pill! Now we will all wait with you and pray for SVR24 so we get to say you are cured!
xoxoxoxox
Mel
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sunrise, how are you doing today?
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Thanks Mel!!
Can't believe it. Done witb S/O!!! Happy dance . Praying for UD for good. I appreciate all the support.
Riseup thanks for asking. Im ok just resting. Really need to go Christmas sbopping, but just don't feel like being on the public. Maybe in the morning. How are you doing today?
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Thanks Mel!!
Can't believe it. Done witb S/O!!! Happy dance . Praying for UD for good. I appreciate all the support.
Riseup thanks for asking. Im ok just resting. Really need to go Christmas sbopping, but just don't feel like being on the public. Maybe in the morning. How are you doing today?
Hey Sunrise,
I did 100% of my Holiday shopping online! It's so much easier. I actually have been doing it for many years and everyone close to me used to tell me how crazy I was. Now they all do it as well!
Mel
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Sunrise Welcome to the wonderful world of "Post Treatment". Labs tomorrow?
Kinda wish I would've done the VL test. Thought it would just be easier to zipline over the mine field and hope I don't land on a mine when I jump off! It's going by very quickly though. This treatment is really a blink of an eye. You're done with meds, I'm about halfway to SVR12! Time flies doesn't it? Seems like yesterday when you were halfway through meds and I was just finishing. Good Luck on your blood work. Have a great week MED FREE!
Brad
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I know it is easier. Guess my mind has been so absorbed I didn't think of doing it. Ive been working and busy. Always have been last minute type. Gonna put my elf hat on and go after bloodwork. Im off tomorrow so luckily I just have my son and his girlfriend. Got others already.
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Thanks so much Brad
Yes labs tomorrow. vl cbc. I will post as soon as I get results. I know, isn't it a trip we got thru in what seems like a few weeks. I know how you feel about the mine field. Hopefully we will get thru without blowing up. Keep us up on your bloodwork Brad. Merry Christmas!
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Sunrise,
Will definitely post the verdict. Feb. 10 is the result target date. You know how that goes. It will be a nailbiting week.
Merry Christmas to you and a Happy SVR New Year!
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Mel, you are so funny. Thanks for the much needed hugs!
xoxoxo
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Brad, Rubye, Sunrise,
When it comes my time to wait for SVR please smack me if I get too whiny. I am not a patient waiter, not even a little bit.
We may be cooking Turkeys again before I hear SVR24!
Mel
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Hi Mel
Just been doing some studying about Hep C a discussion from some experts in the field. They said to let patients know there is a very high concordance between SVR 12 and SVR 24 and they are calling SVR 12 cured to basically enjoy next years turkey with confidence and the 24 week test is just whipped cream on your pumpkin pie!
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Hi Lynn,
You are just always full of great information! Thanks for sharing that!
Mel
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Good to know that info. So the wait shouldn't be as long as we thought ..I will try to put it in the back of my mind and have a holiday. Next month will tell alot. This is where my faith comes in. ... thanks evryone. You are a compassionate group that cares for each other..♡
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No mas! Mel, and anybody else that I might have ruffled their feathers! I truly apologize if I hurt anyone's feelings, but I believe that I have been misunderstood! Here I was telling you that I made a terrible mistake by looking at another forum, that I had been directed to, only to come back to this friendly group, where people look at things in a refreshing and positive light! If you look at my other posts, I have a history of seeing my situation as nothing but positive! I was going through a period of not really being sure how I was feeling, after taking my last two pills this last Thursday, and was curious to see where others were feeling at this point as well! That is where I came across such negativity!
Please guys, lighten up! I'm on your side...really, it was a misunderstanding! Mel, I admire your spirit, but I think maybe if your reread my words, you will see that I was not attacking anyone, except maybe for the people that cant find anything to feel positive about! To those, I might have sounded a little bit harsh, but even my harsh comes only from deep love and caring! The people on this forum, to me, have always been the toughest sons of *%#& that I've ever known! Each and everyone of you is tough as nails, and are here, speaking this way, because you are so strong! I found myself reading about a lot of complainers, and you are correct, maybe I should have posted elsewhere, as to not hurt anyone,s feelings! Though I thought at the time, I was clear in the direction to which I was throwing my sarcasm! I do think that people need to be proactive, as I said! It's a time to take control, because even with help, we are at a weakened state, and what we think is taking control, sometimes still falls short! Perhaps my pep talk fell short of the mark! I only want to see everyone make out well, and begin to live a life that many of us have forgotten about! So many of us have been sick for so long, that it's easy to forget how strong we still actually are. I just don't want to see complacency, when a little extra push will get most of us the results we are looking for!
Are we ok, now? I speak as a very positive person, that if anything, sometimes am a bit annoying with all of my gung ho, we can win, tirades! You folks have always been the best, and the very best to speak to when things are not going great! So, be well, and keep thinking the good thoughts!
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Hi Roger,
We are all here for the same reason, to help each other through our own fights with Hepatitis and some of us even have to deal with HIV and Hep. Each person has the right to feel and post whatever it is they want. Sometimes people have really bad days and sometimes they have amazing days. Either way they are free to share it with us and get support.
My old boss told me a few years back that no matter how good, true or correct my intentions are it really doesn't matter if the perception of the customer is incorrect. I could be the most amazing person an a project and just one little thing being misconstrued could cause chaos to reign all over me. What I am getting at is that perhaps my perception of your post vs. what your intentions were are completely different. I even went back and re-read the original now knowing your intentions and it's still somewhat a mixed bag to me, perhaps because when you wrote it you were frustrated with the negativity somewhere else and that was the focus of your post.
Regardless of my perception, thank you for the clarification. I am not ruffled and have no animosity towards you, life is too precious to me for that negativity to push through. I'd rather focus on the light.
I hope you have a wonderful holiday filled with joy and a Happy Health 2015.
Mel
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These are really beautiful sentiments Mel!
And wise.
I don't know why, maybe I'm just more sensitive this morning, but you really struck home with me here. I like what your boss said and the whole idea of how we are all in this together and for me anyway, how my perceptions can easily be wrong.
Living alone can be hard at times, as many of us know, so it is so wonderful to have a feeling of camaraderie in this forum.
Thank you all! We all contribute to the whole and greater good in our different ways.
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Hi Roger,
That's exactly how I read your first post - that you were disconcerted with the negativity you found on the other forum.
After reading the resposes, I had to reread your first post a couple of times to make sure I didn't miss anything.
And I didn't. In fact, I didn't read anything offensive, disrespectful - nothing. You were talking about your experience on another forum, and HCV treatment in general.
Let me be the first to say welcome back, thanks for your valued opinion, and gradulations on getting through treatment!
Here's to slaying this bastard virus known as HCV!
Cheers, Mike
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I've been following this forum for the last couple of months, but this is the first time posting.
I've had Hep C since probably the mid 70's. First diagnosed as Non A- Non B in the early 90's. I went through 9 months of interferon treatment in the early 2000's.
I just completed S/O about 4 weeks ago. The counts went down from 2.9M to 360 after one week and non-detected at 6 weeks (didn't have it checked between week 1 and week 6).
I had another blood test 2 weeks after completing the treatment. Which I followed to the T. I don't drink alcohol (since about 1977).
I saw my doctor this past Monday, fully expecting that the results would be non-detected (from my 2 week labs). I was surprised that the viral load was 600.
I had labs done Monday afternoon, to make sure the 2 week labs were accurate.
Needless to say, I was disappointed and hoping that the 600 reading was a blip. However, I recognize that's probably not the case.
Now I have to decide the next course of action (assuming insurance approval). I'm not sure whether to go with Harvoni or the new Abbvie treatment. I'm not sure which one would offer the greatest chance of success.
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Hi BH,
Welcome and I am so sorry it looks like your treatment failed, perhaps the new labs will show it was an error.
In the meantime you didn't mention your Genotype and that would help to determine what your next best steps would be.
I know this really stinks but keep taking care of yourself and the cure will come. The researchers are so much further along then even a year ago. Keep the faith!
Mel
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Hi Mike... Type 1A, stage 3.
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Hi Mike... Type 1A, stage 3.
Hi BH,
I think Mike or Lynn can give you the odds better than I can for what to try next although I am not sure many of us will have a choice based on our insurance plans. The insurance is going to be dictating to many of us what our next steps are based on cost and their own policies.
I can't imagine how you are feeling right now but stay strong and know there will be a cure for you even if the first one didn't work. My ID Doc told me if we don't beat this the first time we will beat it, there are many new options coming down the pike with amazing results, some we haven't heard about yet and some are in Phase 2 clinical trials right now.
Mel
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Hi bh4sons,
I'm sorry the first treatment with S/O did not work; that's got to be a big disappointment.
There are a lot of new treatments coming out and you should discuss these with your doctor.
Since you failed on a Sovaldi-based treatment regimen, it might make sense to try a different combination like Viekira Pak. The theory being that a Sovaldi-based treatment may not work for every clinical picture, and the individual who failed to obtain an SVR may have a better result with a different type/class of antivirals.
I would discuss this with your doctor, look at the numbers and retreat.
I know this is a hard time for you now; but, with new combinations/antivirals coming out, I'm confident that you will slay this dragon in the near future.
Focus on that fact - not the past.
Best, best wishes, bh4sons.
Mike
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Hi bh4sons, I'm very sorry to hear about your relapse. I have thought a bit about what I would do in the event of a relapse after S/O treatment and would try for Harvoni. I am also 1a.
I have read that if you have done S/O that you cannot do the AbbVie drugs due to a problem with one of the drugs in the pak. Forget which one. But, since you cannot do the Viekera Pak, that makes you eligible for Harvoni, even with Express Scripts. However, you may have to have cirrhosis to qualify.
I'll go find a link for you.
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Here we go --
"The AbbVie regimen is also not recommended for patients whose livers are not functioning and in people who have not benefited from using older treatments. An Express Scripts spokesman said the company will make exceptions for those patients to allow them to take Gilead's medications."
http://www.reuters.com/article/2014/12/22/us-express-scripts-abbvie-hepatitisc-idUSKBN0K007620141222
Again, so very sorry to hear this. Again, there is still hope!
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Hi Bh4sons
Truly sad to hear of your results. I am waiting for my 4 weeks with stress so I think I know how you feel. Thankfully there are new treatments available and better ones coming. Im scared as I still have an nagging pain still on my right side. Doctor says its not liver but who knows. I hope you let us know what you find out and how you will proceed. Best wishes. Don't be too down. You're not alpne in this even though it feels like it especially when we get bad news
Blessings. ...Sunrise
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Hi Bh4sons,
I haven't read any thing that suggests you cannot take Viekra after an unsuccessful course of S/O. The only thing I've found is that you cannot take them together.
So make sure you discuss this option with your doctor.
Here is a list of medications you cannot take while on Viekira:
Alfuzosin hydrochloride (Uroxatral®) • carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®) • efavirenz (Sustiva®, Atripla®) • ergot containing medicines, including ergotamine tartrate (Cafergot®, Migergot®, Ergomar®, Ergostat®, Medihaler®, Wigraine®, Wigrettes®), dihydroergotamine mesylate (D.H.E. 45®, Migranal®), methylergonovine (Ergotrate®, Methergine®) • ethinyl estradiol-containing medicines • gemfibrozil (Lopid®) • lovastatin (Advicor®, Altoprev®, Mevacor®) • midazolam (when taken by mouth) • phenytoin (Dilantin®, Phenytek®) • phenobarbital (Luminal®) • pimozide (Orap®) • rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®) • sildenafil citrate (Revatio®), when taken for pulmonary artery hypertension (PAH) • simvastatin (Zocor®, Vytorin®, Simcor®) • St. John’s wort (Hypericum perforatum) or a product that contains St. John’s wort • triazolam (Halcion®)
Best wishes, Mike
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Thanks for the responses folks. I was down a little bit on Monday, but am much better now and ready to tackle the next phase.
Merry Christmas
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Hi BH,
Happy Holidays and just know there are some of us that have been where you are and some of who will be there in the future. We are all warriors and one way or the other we are going to beat this.
Thank you so much for sharing your story because it could be any of us facing the same choices very soon. We can all hope it wont be us but until I finish this treatment and hit SVR24 I am not going to believe I am cured.
Keep us updated please...
Mel
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Hi BH
I also failed Sovaldi Olysio. Haven't seen if you said you have cirrhosis an if you treated for 12 weeks or 24 with Sol Oly. They recently updated the treatment for GT 1 with cirrhosis to 24 weeks Sov Oly. I only did 12 so that was most likely the reason I relapsed.
I am just finished week 5 of Harvoni with 19 to go and 4 week be said undetectable not surprised but still a good sign.
There has been information published that having taken Sovaldi does not crest resistance. Also a small study with 14 who failed Sovaldi Ribavirin who took Harvoni made SVR12.
I am not sure if there is an issue with the AbbVie meds from the Olysio but I have seen something about that would be the problematic med if you were to try AbbVie.
I also researched some trial results for a patient like myself comparing AbbVie to Harvoni and AbbVie come in at 93% effective while Harvoni reports 99% for treatment experienced with cirrhosis.
Also did you treat with a PI like Telaprevir when you treated before or just interferon riba? I think there maybe some problems treating with AbbVie if that is the case I think they also don't recommend AbbVie wil people sho failed a PI treatment again resistance issues.
Best to discuss with your doctor. Have you had a look at the updated treatment guidelines? You can drill down to your scenario and see what they say they also list trial results they based their recommendations on.
Sorry to hear you have joined me in my leaky boat but your and my day of seeing the rescue ship is coming soon.
Good luck
Lynn
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I hate auto correct but I guess you can sort it out really not illiterate
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One of the issues about re-treatment is that there is very minimal, if any research, addressing the question: If an individual fails to achieve an SVR with a Sovaldi-based regime, what is the next treatment step?
The reason for this is that Sovaldi, which is the anchor drug for most current treatment protocols (Harvoni, S/O, SOL+RIBV, SOL+INTF+RIBV and so on), has only been available for approximately 12 months. Efficacy studies, based on clinical trials, contained very sample sizes and did not address the population of those who fail to achieve an SVR. Thus, research regarding re-treatment of individual who fail a Sovaldi-based protocol is scant.
In addition, the research studies that include treatment experienced individuals, are generally referring to those who failed an INTF+RIBV protocol (myself included).
In other words, there is no research supporting a better efficacy (outcome) for an individual who fails, let's say, a 24-week course of SOL+Olysio and then undergoes a second treatment with Harvoni.
If there studies available, please post them.
This is why it is so important to discuss empirically researched re-treatment options with your doctor if an SVR is not obtained.
Best wishes, Mike
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My issue exactly,
I don't know about you but I am really anxious about being about to get 24 weeks, I hope I can at least get 16 on top of the 8 with the S/O; I just don't know where that leaves me? I haven't been able to find anyone with results in my situation.
Would 32 weeks straight of Sovaldi be bad? Would 8 of S/O and 12 of Harvoni be enough? Just don't know what I should or shouldn't fight for at this point.
So confused....
Mel
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You may very well be the first Mel. :0
More likely though that you are one of a very few who has done your treatment.
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You may very well be the first Mel. :0
More likely though that you are one of a very few who has done your treatment.
Not so sure I want to be the first with this one Rubye! You never know I may have the new exciting treatment. 8 of the S/O and 12 of the Harvoni, need to think positive right?
Happy Holidays!
Mel
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The study of the 14 relapse they did say that was a limitation of their study of being so few. There are even fewer patients that have done 34 weeks Sovaldi and Olysio probably just in the trials. The FDA only just approved Olysio Sovaldi in November as being per prescription and only on the prescribing information sheet for Olysio. With that addition the FDA also added the 24 week treatment for patients with cirrhosis. I don't know if anyone has done this treatment except for in a trial and haven't seen any data on SVR for those few that have done this treatment.
They only so far have the Sovaldi riba failure group of 14 patients but as the concern is Sovaldi Harvoni resistance certain the results are heartening
Any happy Christmas merry new year
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And thus necessitating only 20 weeks of tx rather than 24. jk
The only thing I could find with regard to studies of those who treated with S/O and then re-treated with Harvoni are the Synergy and Electron-2 studies:
http://depts.washington.edu/hepstudy/presentations/uploads/129/electron2__ledipasvir_sofosbuvir.pdf
“The fixed-dose combination of sofosbuvir plus
ledipasvir was efficacious in a small cohort of patients with HCV GT-1
that relapsed after sofosbuvir plus ribavirin therapy, even in the setting
of advanced liver disease. Larger studies are needed to confirm
these preliminary efficacy results.”
http://depts.washington.edu/hepstudy/presentations/uploads/103/ledipasvir_sofosbuvir_master.pdf
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Honestly Mel, that sounds like a good deal. The best of both worlds.
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Thanks for posting Rubeye.
The preliminary data looks very promising.
Additional studies with larger sample sizes should be availble within the next 6-12 months and hopefully will mirror these results.
Best wishes, Mike
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Actually it's all very confusing to me, I guess time will tell
Mel
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It is confusing. I've just been kinda OC with treatment since S/O came out in January. The U of WA is by far the best site I've found for info, other than the AASLD. I look forward to the day when I can begin to lead a normal life and not be obsessed with clinical trials. :) I suppose there could be far worse things to be obsessed with.
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Yes that wast the trial I was referring to just not a lot of Sovaldi treatment failures at this point but that is a good thing.
Anyway they all cleared and Sovaldi resistance is a non issue so I am cautiously optimistic that 24 week Harvoni will allow me to never have to read detailed clinical trial results etc again
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Lynn/Mike/Mel/Rubye,
Thanks for the great information. Lynn, it sounds like you're the trail blazer. I wish the best for you.
I don't have cirrhosis yet. I am at stage 3. I am 56 and most likely contracted the disease in the mid-70's. Not sure if I'd be a candidate for 24 weeks or not. If I did another 12 weeks, I would think it would not be like starting at ground zero, since the viral load is low and was non-detected for the time I was on treatment (logical, but that may not be the case).
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I am new to this site.. And desperately need your help please. Its now been 8 weeks since i've finished the 12 week treatment. My last blood work stated undetected. However, i still feel terrible. Joint pains, foggyness, and sometimes it feels like a battery charged inside of me. Also, so so tired! Tell me please this is normal.. And tell me it will go away soon...
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Hi Karen. Sorry to hear you are feeling so terrible. I never took S/O, but do know the 2 times I did pegasus/ribivirin and pegintron/ribivirin it took me a whole year to feel good again, each time. So it was 4 years of my life feeling horrible to cure Hep C.....and of course like many, the virus came back.
Others on here I'm sure can tell you about the S/O post treatment.
I attribute my joint pain at the moment to the Harvoni. If it isn't.....I'l have further investigating to do once I'm off the treatment. Will give it 6 mos. Pretty sure it's the treatment though and will pass.
To offer some hope.....after 48 weeks of INT/PEG I did feel better after a year. And those literally nearly killed me.
So hopefully you will feel better way before that!
wish you the best! healing thoughts for you.
Jill
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Hi Karen
I'm really sorry to hear you're feeling so bad. I too have been off this S/O treatment. I have many of the same side effects you're feeling right now I have joint pain especially in my ankles. My blood pressure feels higher towards the afternoon. I go to my doctor in 2 weeks for an examination. I'm glad you're still showing undetected though, that's so important. I've only been off the treatment for a week now. I'm sure it's going to take a few months to get back to normal hopefully we have cleared this virus... Best wishes Sunrise
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Hey Jill
How are you doing today? I hope you had a great Christmas and you're feeling okay. Now here we are looking into the new year already.let me know how you're doing..... best wishes Sunrise
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Hi Karen!
That's the best news ever, you are Undetected!!!!
Now let's talk about how you are feeling, I started with a high viral load and cirrhosis which means I was sick, aching and a big mess before the treatment. The thing is that although we may get SVR we still have cirrhosis and with that can come a bunch of not so fun side effects. The best thing you can do for yourself and your liver is to eat the best you can with a liver healthy diet, talk to your doctor and maybe they can arrive an appointment with a nutritionist to help you. Although these new medications can do what others before them couldn't it doesn't fix our sick livers. I'd really pay attention to what I am putting into my body if I was you and see if certain things make me feel worse, like too much protein in my diet, a food diary would be a great thing to keep and have to review with a nutritionist.
Good news is that the liver does have the capacity to regenerate and many of us hope by curing the infection, eating healthy and following the doctors guidance we can start to get back to a somewhat normal painfree life and that our livers will never get any worse!
Let's hope some of the aches and pains are just do to the S/O and will fade with time as well. For me, I never had this lower back pain before S/O and Harvoni, it's a possible side effect of Sovaldi so I hope it slowly goes away when I am done treatment. Stay strong, be patient and listen to your body, rest when you need to and keep drinking lots of water!
Mel
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Hi Karen,
Welcome to this forum. There's a lot of really good people here and I hope you're stick around to share your experience post-treatment. Nothing about pain and brain fog is normal, but I think what you're asking is that if perhaps the pain is part of the withdrawal from treatment. I think it's a great question because there doesn't seem to be much data yet on the after-effects of treatment with the new drugs. I read a lot on the forums and a few people have talked about not feeling well for a couple of months, complaining of mostly joint pain and memory loss. But, it seems like most people have no side-effects after a week or two.
Do you have cirrhosis? If you do, maybe your liver is causing these problems. It would probably be a good idea to talk with your doctor and have some more labs done. I really hope you get to feeling better soon and congratulations on being undetected.
Also, the advice Mel gave you is very good. I agree with her that even with cirrhosis our livers can begin to heal once the virus is gone as long as we don't drink alcohol and keep a good diet and get some exercise. Oh yeah, one thing I've found when I get a lot of joint pain is that walking always helps, even if it is just a few blocks.
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Hi Rubye!
How are you feeling ? Hoping you had a wonderful Christmas. New Year is almost here. Hope we all have a healthful one.... Thank you so much for your positive and inspirational thoughts and tips. Really helpsget through the fearful times. Trying to up the activity level and walk and do things. Looks like snow.... have a good evening....PS. Liucinda had a nice info. site for herbs with interactions, good read.in on 6 weeks in- on treatment section.....Sunrise
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Hey there Sunrise!
I'm fine except tired all the time and nauseous some of the time, but good overall. I'm almost done again. :) Another two weeks or so. For me, I can't think too much about it though. You sound really good. Better. And now here we go with a new clean slate for the coming year. Yea.
As far as anything inspirational, it'd be nice if I'd take my own advice. :)
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Rubye
I hope the nausea has subsided some. Wow it's right around the corner you are getting off treatment. I'm really hopeful that you will clear the virus. We're all in this together fearlessl warrior! Have a great New Years... best wishes Sunrise
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Hey Sunrise,
Have you checked out that Harvoni highway lately? I can't keep up man! Did you see the new one, Mugwump? What the heck is a Mugwump? Funny! S/O is just an old dusty trail compared to "Life in the fast lane" Harvoni Highway! Seems as though we're the last of the singing cowboys girl! How have you been feeling? Wish you the best on your results! Have a great week!
Brad
Wishing the very best to all Harvonians as well!!!!
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Hey Brad!
I resemble that remark, I am a half-breed on the highway, maybe the one and only too! Rubye is also on the S/O highway with you guys!
I always had to be a little different, I don't even care as long as we all end of SVR at the end of the road!
Waiting around for the PAK people to jump in :)
Hope you are all doing well today,
Mel
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Howdy Brad
I know! Where have all the S/Os gone??? We missed that train lol. Hopefully we won't have to get on it neither... I haven't checked out the latest forums, but thats funny. I will check it out when I'm done. Im still waiting for eot tests. Stressful. Trying to stay busy and lose weight. I blew up on this tx. I couldn't stop eating!! lol....Blessings Sunrise
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Hi Mel!
I know!! You are getting best of both worlds. Yes now it seems like Brad and Rubye are camping with me lol....How are you feeling? My body is still acting wierd, but at least I am able to control my eating. What a strange side effect. Still achey... Happy New Year!....Sunrise
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Hey SunShine,
I feel like that matches you better these days so I am renaming you, haha.
I am doing ok, rash is calm today, I am working from home and on lunch break. Just ordered Pizza for the grandson who is on winter break and making me insane. All in all a normal day and no complaints. It could be WAY worse so I am enjoying the relative calm.
I just got off of a crazy sleep schedule, 3 nights I couldn't sleep then I was sleeping almost straight for two days, now I am back to not sleeping last night. It would be really nice to have a normal schedule but hey I will one day. Tomorrow Bottle 2 of Harvoni is scheduled to arrive which will mean I have completed 4 cycles, 3 S/O and 1 of Harvoni and wondering how many more the insurance company will send of the Harvoni.
Glad to hear your appetite is under control again, you will be an all new you the minute you hear you are SVR!
Mel
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Im sorry your sleep schedule is so erratic. Hopefully it will smooth out. Wow it is going though... you should clear that beast for sure. I am anxiously to know my status..... and the beat goes on.... best wishes. Good to hear you ate having some calm.. pizza sounds so good but I can't. ..ugh....Sunrise
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Hey Mel,
You are the one and only Halfbreed on treatment. Seems to be going fairly smooth for you. Keep on pushing Mel. I know you're not pregnant but keep pushing anyways!!
Sunrise - "Howdy" Spoken like a true cowgirl! Can't wait to see your results!
Have a great day!
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My friend is ND 12 weeks EOT! Normal other tests!
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Hi Vflowers,
Very Good News!!!! That is such a great feeling! Always puts a smile on my face when I see this! Thank You for posting these results. Very Happy for you and your friend!
Brad
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Hi vflowers
Thats so great! What treatment was he on?
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12wks s/o. Previous failure on peg/RIBA/interferon. Semi severe reaction to Oylsio from sun, joint pain, bad finger nails & hyperbilirubin (up to 6!). 12 was side effects all but gone, normal labs. Recheck in 12 wk with US. Cirrosis , high viral load, 1a Genotype
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Wow im so glad to hear hes doing better. I had joint pain weight gain not bad sun sensitivity. I took 12 weeks s/o hoping for undetected. Thanks so much for posting. You all have a great new year!
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I just completed S/O about 4 weeks ago. The counts went down from 2.9M to 360 after one week and non-detected at 6 weeks (didn't have it checked between week 1 and week 6).
I had another blood test 2 weeks after completing the treatment. Which I followed to the T. I don't drink alcohol (since about 1977).
I saw my doctor this past Monday, fully expecting that the results would be non-detected (from my 2 week labs). I was surprised that the viral load was 600.
I had labs done Monday afternoon, to make sure the 2 week labs were accurate.
Needless to say, I was disappointed and hoping that the 600 reading was a blip. However, I recognize that's probably not the case.
Not sure exactly why the counts were showing 600 on the 12/8 test, but my 12/22 labs came back as NOT DETECTED!
Not sure what that means for the future, but I'll take it!
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That is so great bh! What an awsome way to see in the New Year! Did they tell you why things were different the second time they took the test?I'm so happy for you and your family they're going to have you around for a long time, healthy and happy....best wishes Sunrise
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Thanks Sunrise...
I called yesterday and asked them to fax me the lab results, so I just looked at them this morning in my inbox. I haven't spoken to the doctor yet.
Praying that the 2nd test results were the right ones (4 weeks) and that the remaining results continue to show Not Detected.
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I heat that! I haven't received my end of treatment test yet. Then I have my 4 week tests Jan 22. Im anxious and a bit nervous, but the good thing is I got UD at 4 weeks in tx. Best of luck for all of us!!...Sunrise
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I pray that you would have peace and a complete recovery Sunrise.
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Thank you so much. That is my hope for all of us.... Sunrise
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Hey Sunrise,
How is everything? I'm counting on seeing your results before that Ball drops in about 25 hrs. I know you put that beast down for good. Will check Posts in the A.M. before work. Will say a Prayer for Sunrise before sleep tonight - for sure!!
Brad
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Thanks Brad
Praying for you too. My patient advocate called me yesterday the CBC results came in but not my viral load results so I don't know if I'm going to get them by tomorrow. Still have that nagging pain on my right side kind of creeping me out. I hope everybody's having a good evening. Looks like snow tomorrow. Everybody stay warm keep fighting the good fight.... Sunrise
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Hey Sunshine!
Just thinking about you and that nagging pain. Maybe you have a really stuck gas bubble, have you tried antacids? Just might be worth a shot now that you are off the S/O. Do you work with a Gastro? Maybe you can get an ultrasound and they can take a peak to see what's going on. You know all about being proactive so go for it next week!
Did you hear from them today with your results? I know you End of Treatment is going to be UD!
Happy and Health SVR 2015!
Mel
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Hey Mel
I hope this note finds you doing well. Thank you for your well wishes. I wish you all a Happy New Year as well and of course a healthy one. I talked to my doctor and he seems to feel that it is a muscular problem.I have had an ultrasound done and they could not find anything wrong. Thankfully today I have not had much pain. We do have snow of course in the Southwest today. I have about 6 inches in front of my house. And it's getting down about 19 degrees tonight so I will be staying home safe and sound. What are your plans for the holiday? Blessings.... Sunrise
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I talk to my patient advocate today and she said that the viral load test has not come back yet. I figure it's because of the holidays it kind of slowed things down. All I can do is be patient but that's the latest no news
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I talk to my patient advocate today and she said that the viral load test has not come back yet. I figure it's because of the holidays it kind of slowed things down. All I can do is be patient but that's the latest no news
That's ok because you weren't in pain today so guess it's No results with No pain!
No snow yet in NJ this year but the new year will change that soon I am sure. Busy day, saw my doc, went grocery shopping, came home and made a big pot of Bean Soup and then made Salmon and Baked Potatoes for dinner. I just want to eat junk though, what's wrong with me?
It's 25 degrees here so just hanging at home with the grandson and taking it easy. Glad you are home safe and warm.
Happy Happy New Year,
Mel
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Ummmmm salmon sounds good! Talk about junk I'm into the icecream right now. Naughty girl. Sounds like you are doing way better Mel.... :-)
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Greeting fellow warriors
I just wanted to touch base with everybody. I still have not received my end of treatment results. Heck I can't even get in touch with LabCorp. I think they must be really backed up now that everybody is getting treatment. Its been over two and a half weeks and I still have not received my viral load test. Hope everybody's doing okay taking your medication or finished. Stay warm take care. kkeep in touch let me know how you're doing everyone blessings sunrise
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Good luck Sunrise may you walk among the dragon slayers and shout from the mountain top FREEDOM!!!!!
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Hi Sunrise,
There is a way to get all your lab results online from LabCorp, they call it Beacon and I think anyone can sign up.
Hope this helps,
Mel
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Hi Mel
Hey I signed up for beacon and only got one lab result from like 3 years ago and nothing else. I even emailed their question link and haven't heard back. So not having a lot of luck with that process. The old lab was at lab corp in a different town than I go to now but Ida's the same tech at the office I go to currently. Frustrating....
Any ideas?
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Hi Mel hi Lynn
I tried getting on that but they wanted too much information online and I wasn't willing to give it. Besides that I couldn't get through the link anyway. Hopefully I'll get it soon I guess I shouldn't worry too much I hope everyone's doing. I haven't seen anybody here for a while hope everyone had a good holiday. How's the side effects going with this Hervoni?
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Nothing to report here re sides
I am almost as anxious as you to hear your results lol
Best to you
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Thanks Lynn
I miss you girls and guys. It's so nice to have someone that understands what you're going through I can't talk about anybody really except one or two people in my life. Well I'm glad to hear that the side effects are minimal how far along are you now?... Blessings sunrise
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Sunrise,
I hear you, even when I talk to those i can they just don't understand like my fellow forum members do. I appreciate all of you so much.
I agree with Lynn, I am so anxious to hear your results!
Mel
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Ok folks
Just got a call from my doctor's office. I am end of treatment undetected!!!! Just 3 more tests and Im offically cured!! I am praying... hope you all are coming along also... Blessings Sunrise
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Sunrise "UNDETECTED"
It's about time! Geez! I'm happy for you. It is a good feeling for sure. Hope you stay UD forever, and don't have to wait forever for your next results. EXHALE!
Brad
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Happy for you... Hopefully this is a great indicator of future things to come.
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Thankl you so much!!
I know I couldn't believe it took this long as well. Hopefully yes it will be a good indicator for future things to come. I really appreciate all your support people, and hope ud forever for everyone here... Blessings sunrise
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Finishing week 8 on Monday with blood draw on Tuesday 01/13/15. I don't expect they will be doing a viral load as I was week 4 UND. So just liver functions and a CBC most likely. Always like to see those ALT and AST scores and the Platelet count hoping one day to get back above 100 would be wonderful and a great sign.
I hope I will hear by late next week or early in the week after.
How are you doing these days Mel liking Harvoni and does Harvoni like you?
Heck Sunrise it has been way long call your doctors office and have them give the lab a nudge.
Best to all
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Hey Lynn k
I did get the results UD at EOT. I hope your tests come out well. By the way, at what point did you relapse from S/O? Was it at end of treatment. ? I guess I'm asking because this next 2 weeks are a big indicator for me. My 4 week test is on the 20th. ..Blessings Sunrise
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Lynn,
I can honestly say that I am doing way better without the Olysio. That could be because I fought off the brunt of the infection while on S/O and by the time I started Harvoni (week 9) it was just out looking for stragglers because I was UD already per the blood work. I don't want to blame anything but I am doing ok and have my days of being human again so that's a huge plus.
Did the Beasts approve RibV for you? Were you able to get the date extended ok? I am wondering if I will be able to get all six bottles prescribed or be stopped at 4.
Mel
BTW: CONGRATS SUNRISE!!
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Thanks Mel
V yes I was so happy to hear the news although I kind of expected it because it was the end of treatment blood test. Now the real test is on I can't my 4 week post treatment on the 20th of January. I'm pretty much that I'm cured but of course I am still praying. I'm so happy to hear that you are soing better witbout it, that was one heck of a drug I tellya! Finally my anxiety is subsiding. The joint pain in my ankles and hip Iis still there, but hopefully that will fade. Just keeping fingers crossed for UD. Glad to hear you are feeling better, it is a miracle these new drugs.....Blessings Sunrise
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Hi Sunrise
Yeah what Mel said CONGRATS!!!!!!!
If a person becomes UND on treatment they will stay UND through treatment there are no relapses while on treatment.
My treatment with Sov Oly was March to June 2014. My viral load was tested before start of treatment viral load was 6.315 Log 10. I was tested again at week 4 in April I was UND at week 4. I was tested at EOT 11 June again viral load UND as expected. The next time I was tested was 12 weeks post on Sept 9 Viral load was 6.384 Log 10.
So yes I was UND at EOT but was found to have relapsed when tested again at 12 weeks after I took my last pills. Bear in mind I am a multiple time null responder, GT 1a with cirrhosis. For patients like me they are now seeing more like 85% effective.
The newest recommentation and per the Olysio prescribing information sheet for a GT 1a with cirrhosis is 24 weeks Sov Oly and I think that may have done the trick but that was not the protocol when I treated. And so it goes...
Hi Mel
Glad you are felling better. I will have to wail a bit more to get the date extended Express Scripts said to ask when I am setting up for next refill in three weeks. Nope no word on Ribivirin either. Express scripts say they have not had a new prescription yet. Hummmmm. I sent a message to my doctors office through My Chart Guess I will need to give them a call to find out whats happening.
Peace
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Thanks Lynn
yes it seems insane that you're doing well and then boom setback. it seems that my results so far is exactly like yours. The only difference is I am not cirrhotic and I've never been treated before. I guess I'm just praying that I like and one of the 90 percent that clears this dragon. Its just Lynn, where did these dragons hideout. you think in the liver? Well all we can do is just wait and hope and be positive. I hope all of us find our cure....Blessings Sunrise
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I think you are more like 95%. And I think the are hiding in plain site just below the tests capability of detection. The 3 of the playing cards waiting for the storm to go away
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Lynn,
Crazy how fast you get undetected and then that bastard comes back over and over again. I didn't get UD until some time after week 4, tested at the beginning of week 9 I was finally clear. So somewhere between 4 and 9 weeks I cleared.
I am cirrhotic and started with 8.3 VL but this is my first treatment. I have no clue what my SVR % is but I have to think if they don't give me the full 24 weeks prescribed it could impact me.
Just going to keep pushing on and hope that whatever I end up getting works and I know we are all in the same boat. We all just want our lives back and SVR, I hear all these high percentages but I think the numbers will be much more accurate as more of us go through the treatments. How many total people were really treated in the Harvoni or S/O or AbbieV clinicals vs. how many people are actually on the approved treatments today? I think the next 12 months are going to be very telling.
Just really hope these % of SVR remain high and we all can clear this monster from our bodies and lives.
Mel
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Yes I was surprised it came back to where it left off in just 12 weeks. I wouldn't say comes back for me over and over that was the first time I had ever made I dent in the virus.
When I treated with interferon when I say null responder I really mean null responder. The last time I treated with Interferon and Riba my viral load actually increased while on therapy!
The dragons said yes give us more liver with this interferon Chianti.
So I was amazed and very hopeful when I was UND at 4 weeks on Sov Oly and very sadly disappointed when I relapsed at 12 weeks post.
If I beat this thing I want to go on a Hike in the cascades maybe up mount Si here in WA so I can make folks look at me wierd when I shout FREEDOM at the top of my lungs. Probably more than once ;-)
Lynn
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I hear you! That sounds like an amazing idea, although I would probably choose a warm beach over a mountain!
It's crazy but I feel so invested in all of us to clear, not just myself.
Mel
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Hey brad
I got your message. I don't know if my response went thru. Thanks i hope you are right. Im not discouraged. Just anxious. Thanks for the pep talk :-) Blessings. ...Sunrise
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Good morning Sunrise
Did you get three messages by any chance? Had some site errors occurring and had to send 3 times. yes re-typing also! Hope you have a good weekend. Wind chill this morning is -22!!! It's crazy cold. Joints are a little creaky today!
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Hmmmmm, was it site error or user error BB??
Hope you are having a good Saturday!
Mel
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yes there must have been some kind of error. I hope you all stay warm. Its not too bad here just a little cloudy. Nothing like up in the Midwest Geez. Hope everyone is doing well with your treatment and you're feeling better...Blessings Sunrise
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Sunrise - Congratulations on this good news. You have been so generous with your support and encouragement to others, and I am delighted to hear you are cured. If you ever feel like sharing your story, I'd love to see it: http://www.hepmag.com/hep_stories.shtml (http://www.hepmag.com/hep_stories.shtml)
By the way, I invite everyone to share their stories - responders, non-responders, never been treated, renegades, etc....I think stories are how we help each other.
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Thanks Lucinda
Its the checkered flag! 2 more tests and then hopefully we can call it a victory. I do try to stay positive. My 4 week test on 20th then hope to move to next, 12 week. It's alittle nerve wracking , but definitely am hoping. I appreciate everyones support here...Blessings Sunrise. Its a miracle that this is even happening!
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Sunrise....just got home from the owl safari (that's what I call it anyway) from -20 Duluth...and it was FANTASTIC! I have to run now for my last blood test but wanted to see your news.
I AM SUPER HAPPY TO SEE YOU ARE UNDETECTED>>>>>>been praying for YOU and everyone on here~
OK guys.....good to be back and see you here! namaste.....Jill
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Hey Jill! glad to have you back! Well you know what I mean. Wow -20 thats ice fishing weather ! So how are you feeling? Im thankful for UD for the next 2 tests are what really matters now. I'm so thankful for everything that I've been able to accomplish since I've been here. So whatever happens it's on to the next chapter for all of us.... sending healing energy your way....Sunrise
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Jill,
Welcome back! We missed you :) I think I just posted earlier this week that I wondered when you were going to be back.
Hope your vacation adventure was everything you wanted it to be. I don't know about that -20, oh my gosh!!
Lots of Undetected news running around, it's been mostly positive news, so exciting to see that. Pretty awesome news from our Sister Sunrise!
Mel
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Mel.
HI SISTAH!!!!.......I'm finally getting caught up with everyone. boy it takes a while!
I just posted in the other forum but I guess this is the place to be now that I finished my pills.
Sending LOVE AND LIGHT TO YOU MEL and everyone on here. You were all with me in the bog everyday!
Saw 4 kinds of owls and took close to 2000 pictures......what was I thinking? ha ha...but they were my first ever owls in the wild and not in a rehab place so seeing them in the wild was incredibly special and celebrating a new year virus free so far is too!..
For all of us! This is our time! WE will beat this....we ARE beating it. I am praying everyday for each and everyone of us. xxxx Jill 0000
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So glad you had a great time, you deserved it. Not sure how you handled those temps though, yowza!
Sounds like you need a little rest after the vacation but you just take good care of you, eat good and regroup and in a couple of days you will be 100% again!
You were missed here and happy to have you back with us. I'd love to see some of those pictures sometime!
Mel
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Hello Ladies
Last blood test Jill? I thought you are doing 24 weeks of harvoni. I'm alittle dense with my memory. So good to see you're doing well. Mel you are so right. We must all take good care of ourselves. I am still having these dang leg pains and back of ankles are inflamed. Hope ot subsides. Blessings .. Sunrise
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Hi Sunrise,
Sorry you are so achy, it's not fun at all but guess what your liver isn't infected anymore and you are going to start feeling a tiny bit better every day!
Remember glass half full sister!
Mel
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Sunrise...have you gotten your results yet? Doesn't the lab send your doctor the results? I'd be calling the doctor's office and get them involved. Waiting is difficult and to delay results is like abuse!
Hope you are doing OK.
Opps...for some reason the newer posts didn't show up so I see you got your results and they were GREAT! I am happy for you but sorry you are still having issues. Maybe you need to go to physical therapy to get your joints moving and loosened up. I really get good results from acupuncture too. Just a thought.
Take care Sunrise!
Katie
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Hi Mel hi Katie
Thank you so much for your compassion. Yes got tbe EOT results. Now have to get 4 week post tx test next tues. Im really nervous as I still get pain on side. We shall see. I am hopeful.
The doctors office called with results. What makes me angry is I asked for them to send in mail. Never did receive them. So annoying.
I do walk and I work standing which I figure does mpre harm. I dod start some weight resistance work outs in morning. Got to fo something.. I have gained too much weight with the tx. Wierd huh. Hope ypu are all feeling better. I can sense in the posys that we are all seeing the benefits of thos new medication. What a miracle...Blessings Sunrise
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I make sure to get all of my results for my file. I actually bought a binder and a hole punch. Maybe go to the office and have the clerk make copies for you.
The walking is good, but the standing not so much. I have a real bad arthritic knee that they've wanted to replace for about 12 years HA! In spite of that, I painted the siding of my entire house, up and down ladders and the ortho just can't figure that one out when he looks at my x-rays. One thing I found out is that we modify our walking when we have issues and so without even realizing it, things can seize up. My problem is when I walk, I don't roll my foot normally so my ankle was getting stiff and it would creak and pop when extended. I have fixed that, first with physical therapy and now every morning and night, in bed, I flex it and rotate it and it is doing good. Things sneak up on you.
Weight gain seems to happen at the most inopportune times and new medication will do that. I have really been carefully watching my scale and I jumped up 5 pounds almost overnight so I have gotten rid of 4 of those, and I would be better off if I lost another 15, so I am going to work on that. Every extra pound puts extra pressure on our joints and as we get older the harder it is to take off, keep off and keep our muscle mass. So keep up the exercise and be sure you are wearing good supportive shoes at work. Really important.
Katie
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Good morning warriors
Got my blood drawn yesterday. 4 week post treatment. Doc said this is a new test that comes back faster. I should have my results next week. Hope everyone is doing great in their treatment!
I will let you all know the results when they post. Thank you for all your support and knowledge, it has helped sooo much..Blessings Sunrise
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Good luck Sunrise. Praying for you!
Brad
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Sunrise,
You are going to beat this beast! You've got this sister!
Mel
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Thanks Brad thanks Mel
How are you kids doing? Hope well.
You won't believe I've gained 8 lbs this month! I'm changing that. I really think those tx meds really sent me over the edge with food. I don't know how or why. Sometimes I wonder if it's the ambien. Well either way. I'm on a mission to lose weight!!! Thanks for the prayers and good wishes :-) blessings Sunrise
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We are all thinking of you and sending out positive, healing thoughts. You ROCK Sunrise and death to this monster! Just think...in a few years it could be a thing of the past!
Katie
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Thanks so much Katie
I just saw your post. That is a great way to look at it. Gotta stay positive. Just trying to keep up and moving. It would be a huge shift it this eradicates hepc from humanity. We were so fortunate to live in a cutting edge time like this as well. Again thanks Katie feels like we are all in this together....Blessings Sunrisr
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Ok folks
4 week post treatment blood test results UNDETECTED!!! I am so thankful to everyone who has helped me with getting thru this. Ot has been a hell of a ride. Now 8 then 12 more weeks and im out of the woods. My doctor seems confident I beat hep c! I hope the same for everyone. Blessings Sunrise
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CONGRATULATIONS SUNRISE!!!!
Simply marvelous news and we are all rooting for you!
Katie
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Thanks Katie
Im rooting tor you all too!
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Sunrise
CONGRATULATIONS!!!!!!!!! WOOHOOO!!!!!!!!!!!!!
Almost there!!!! This is a big one!!!!!!
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That's excellent news Sunrise! Congrats and hope for continued success.
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Sunrise You have truly brightened my day! I am so happy for you! Brings me much Joy and Hope......Thank you for that!
Happy SVR4 Day!!!!
Brad
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Thank you bh4sons, thank you Brad
Same for you both. I know how this can mess with ones mind. It is a relief. I hope we all reach permanent UD that will be awsome.
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I am so happy for you Sunrise. Enjoy the ride, and hopefully we'll be celebrating an SVR12 with you.
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Thank you Lucinda.
I feel like the year remission will be the brass ring. I so appreciate all tbr help and support here. So far so good. To be honest, hats off to all endured Pegasus and riba and the harsher DAAs. Those drugs I took were still one heck of a ride. Still working on the up side journey. Joints were really effected. Small price to pay for no more hepc....Take care....Sunrise
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HEY Sunrise, Ive been wearing a warrior sword necklace for a while now. Im hoping to have SVR12 engraved on the back of it next week! 1 year mark seems like a long way off but we will reach it!
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My thought will be with you Brad! That is the big test we all wait for and it is nerve wrecking. I have about 3 weeks on Harvoni and the hardest part will be the wait for the 12 week test. In another few months we will be finding out how many have done and I am expecting GOOD news for everyone. This forum has been such a blessing!
Katie
How are you doing Sunrise? Are you feeling better? Hopefully all is going well and you are noticing improvements
Healing thoughts sent your way.
Katie
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Thanks Katie
Such sweet thoughts... I feel the same for you. Im ok cept for this weight gain and joint pain.
Hey Brad hope you are still wearing your sword! I am anxious to hear your UD RESULTS! Keep on slaying! They have been defeated!
Blessings Sunrise
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Katie - Thanks for the well wishes. I wish good news to all as well. I handled the impatient part of the wait fairly well, now entering the nervous phase. I remain cautiously optimistic. This forum ROCKS right? Hope you are doing well Katie.
Sunrise - Still wearing the warrior sword! I even went to Walmart and got myself a results day shirt. It has a few skulls on it and a ferocious looking Dragon that appears to be exiting the center skull. (Im so immature)! It's hanging in my closet begging to be worn. I have no signs that the virus has returned - still feeling progressively better but it's a sneaky beast so not getting cocky with the evil reptile.........yet! Good day warriors. Battle Hard!
Brad
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Hi Brad
That shirt sounds fierce. So when do you get the results? Next week? Im sending UD vibes across the nation to you. Hope your day goes smooth. Breathe breathe :-)...Sunrise
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Im breathing Sunrise! I figured my results date to be Feb. 10 If I don't get them by then, I will probably throw a tantrum, like I did on treatment waiting for my 4 wk result! Lucinda will again have to yank on the reins and remind me that the whole world isn't against me and they might just be backed up a little and she will be right and hopefully I will see them same results - UD! Heres to waiting! Brad
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Hey Brad
My doc said these new tests take a week. How far they've come. Well just a few more days. We will keep you sane. Just holler if you need a virtual smack to snap you out of the panic mode. You are doing great. Seem alot less freaked out than I was a couple of weeks ago. Keep up the good spirits Brad...Blessings Sunrise
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We will keep you sane. Just holler if you need a virtual smack to snap you out of the panic mode.
I'm still laughing at this!! I'm sure there are plenty of volunteers here for that job!! You are too funny! I needed that! BB
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Good Luck hope you get you results before we all have to slap you around for a bit lol. But only in a caring and concerned way lol
:)
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Anxiety level is definitely increasing as those last grains of sand trickle through the hourglass! My sleep pattern is similar to early treatment days. I may need that "virtual smack" sooner than later!! BB
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Good morning Brad
It' s gonna be alright. Try not to worry. Easy for me to say. I know this is a trying time for you, but I have a good feeling about your test. Just focus on how good you feel. I am here for you cheering you on! It's gonna be UD!!! Sunrise
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Brad
Good news. My friend in Fla just got her 12 week post tx results today. She got the blood draw Monday. UD!!!! See we are gonna beat this. She had it 40 yrs. Luckily she was only F1. A big health foodie. So see we are gonna do this!!!!
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Hi Sunrise, Thank you for your encouragement. You are so kind and uplifting! I appreciate that. Big Cyber high five to your friend in Fla. Very good news indeed! I'm doing better.Just needed some decent sleep. We are going to beat this Yes we are!
Have a great weekend everyone!
Brad
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Im breathing Sunrise! I figured my results date to be Feb. 10 If I don't get them by then, I will probably throw a tantrum, like I did on treatment waiting for my 4 wk result! Lucinda will again have to yank on the reins and remind me that the whole world isn't against me and they might just be backed up a little and she will be right and hopefully I will see them same results - UD! Heres to waiting! Brad
I've been MIA but wanted to check on you Brad, I am thinking about you sitting around waiting to hear SVR!!! I wish they would call you already!! I think you have been very patient :)
Mel
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I have received the news that this round of treatment has been unsuccessful. I was diagnosed 3 yrs ago and for a moment, this treatment failure news gripped me with almost the same intensity. I am encouraged by the successes of these new treatments. I will get the right combination and I will be free from this disease forever! Treatment failures unfortunately are part of the progression towards the eventual eradication of Hepatitis C. I am fortunate in that today I have the necessary tools to help navigate through this process, thanks to the tireless searches, unselfish efforts, and generous support found on these forums. I will continue to stay healthy. I will not let this disease define me.
I have HCV, HCV does not have me!!!
Brad
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BadBrad!,
Sorry to hear the bad news. Please keep us updated as you proceed to the next level. You are in my prayers!!
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Hi Brad,
I'm really sorry to hear this - we were all pulling for you and an SVR12.
You have the right attitude that will carry you forward.
There are some promising treatments out there, and you'll get this nest time!
Best wishes, Mike
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Picnic Much appreciated. You are in my prayers as well.
Mike I will get this next time. I will one day say "Dragon Down And Out"!!!
Thanks much.
Brad
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Sorry to hear that Brad! With your determined positive attitude I know you will succeed and you have everyone's support. It's a reminder to all of us, it isn't over until it's over and the fight continues. Thank you for sharing!
Take care and know you aren't alone.
Katie
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Sending you a big hug Brad! You are gonna beat this beast, you will win and I'll be right here with you when it happens!
Mel
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Sending you a big hug Brad! You are gonna beat this beast, you will win and I'll be right here with you when it happens!
Mel
Mel,
Thank you for the hug! You are such an inspiration to this forum! We will all beat this beast! It's prep time for round 2 for me and the bastard is going down!
My PRAYers are up for you Mel! Give it all you got! Thank you again.
Brad
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Hi Brad
Im having a tough time digesting this news. I realize it is just a setback, and not by any means the end. It is the beginning of a better tx. Keep strong Brad. When do you think you will be gettingthe next round? We are all here for you.... Sunrise
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Sorry to hear your news Brad, Keep your head high, you gave it a valiant effort. YOU WILL GET IT NEXT TIME. Keeping you in my thoughts and prayers, your positive attitude help keep us all moving toward the goal.
Best Wishes,
AL
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Katie Yes, the fight continues. It is much easier with supportive people pulling you along. Thank you for your support Katie I appreciate that.
Sunrise It is disappointing getting the no go news. It is much easier to bear having your support and encouragement as well as others on the forum. Don't know specifics about treatment no. 2 but will discuss with Doc soon. I will stay strong Sunrise. Keep making healthy choices and battle hard warrior!
Al I will keep my head held high and I will keep my eye on the prize! We will all reach the goal! Just did 50 push-ups, sits-ups to follow! Best wishes to all.
Brad
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Hi Brad
So sorry to hear this I definitely feel your pain. I was reading through your old posts and figure you treated for 12 weeks but I dont know if you have treated before or your fibrosis.
But anyway I guess you can join me when you are ready on the Harvoni 24 train unless your doctor wants to wait for the next shiny new thing.
I have read Sovaldi resistance should not be a concern.
Shine up your armor and sharpen your sword warrior! Once again into battle.
Hugs to you
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@brad, i have nothing to add that has not been said already, just wanted to throw in my support, hearing the word relapsed is such a crappy day (i cried in the parking lot). just remember we have your back for the next round.
@mel, i was just last night wondering where you were, hope your feeling well :D
kate
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Lynn and Kate, Thank you both for your support. As you both know, the no go news is a tough day indeed! Trying to pinpoint what may have went wrong is maddening! I will not spend much longer in that space. Just couldn't trap the heartiest of the little beasts that were swimming around laughing at me!
Brief profile - Geno 1a or 1b ( they never determined which) I assumed 1a
Radiologist report - "mild increase in hepatic echotexture". "can be seen in early hepatic steatosis". GI told me he didn't think i had hepatic steatosis (fatty liver). Said he thought it was just inflammation. So another uncertainty! I think he may have been judging on my apparent healthy appearance. I am 5 ft, 2 in, 120lbs and muscular. I do a lot of resistance training. I am aware that you do not have to be obese to have fatty liver.
Perhaps it was a factor in treating. I believe fatty liver patients are harder to treat so I may have required to treat for 24wks vs. 12wks. Very frustrating.
Still waiting to hear on what plan B might be. For now its back to jumping jacks and eating leaves! I am 52 yrs old, fit, and determined! I will conquer this beast. Sun is shining, it's a good day!
Battle on warriors!! Brad
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(posted on another topic as well)
OMG, Rick and Brad! I'm stunned and brokenhearted for you both. I'm praying that you will be approved for Harvoni and that it will work for you!
My 12 wks Harvoni ends on the 25th and will have labs done at one month post treatment and again 6 months from then I can't imagine how I would feel to get the news you just did, although I do think about it off and on - scares the hell out of me.
I almost missed these posts but you can be sure I'll be looking for them in the future. You are in my thoughts and prayers - sending you positive thoughts and energy and praying for the blessing of complete healing. ...Islandgirl
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Damn Brad Sorry to hear you relapsed. I'm waiting my 4 week post s/o treatment labs, should hear by tomorrow or Monday. Its always in the back of my mind about relapsing cause I'm on old protocol of 12 weeks. I tried for 24 but couldn't get it done. My condition calls for 24 weeks on new protocol. I don't know how close your stats are to mine but mine are, f-3, chirrosis, 23 million vl, non-det. at 4, and 11 weeks. It sounds to me like people with chirrosis need 24 weeks of s/o because of pockets of the virus hiding in the scar tissue or somewhere where the drugs can't get to in 12 weeks. I haven't even thought of "whats next" if I relapse. I'll cross that bridge if I have to. I'll be watching your posts to see what you do. good luck trapper
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Hey Trapper
I hope your tests come back UD. My 4 week post labs are undetected January 21, and still am stressing about relapse with my 12 week post tx labs. I am trying to stay upbeat for us because as we follow the new protocols, it's only a matter of months til we get cured. I'm with you all thru our journey... blessings. Sunrise
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I saw this on Facebook today:
"Healing doesn't mean the damage never existed, it means the damage no longer controls our lives."
author unknown
I can't say I am there yet, but I am definitely moving in that direction!
Good wishes to all of you. Many of us are getting to the wait and see time period. I find waiting to be the most difficult part and I still have 2 weeks of Harvoni. I am so grateful for everyone on this forum as the support of this caliber can not be compared! Thank you!
Katie
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Hi Katie
You as well! You always are the voice of kindness and hope towards all. Wow just 2 weeks to go? That flew by, seems like. How are you feeling? Please let us know how your labs go. Best wishes Sunrise
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Thanks Sunrise..it did fly by, at least the first 8 weeks when I was SO Happy! 9th week...not happy anymore. Still sleeping good but in a rather glum place. Having the remodeling done was not a good idea at this time but I didn't have much choice and that has been stressful instead of joyfully exciting. Very tiring.
But nothing major to complain about. Just weak and tired and gloomy and wanting nothing but solitude instead of strange men and their hammers and dust and muddy boots. HA!. Part of it I am sure is I am anticipating the wait and because of my fatigue I let the unknown take it's toll.
I will definitely stay in touch and send healing colors of light to all of my forum warriors!
Katie
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Hi Trapper
F3 is not quite cirrhosis F4 is cirrhosis so that is most likely why you were not able to get the 24 weeks
Most will cure so the odds are in your favor.
Like my doctor says "Think Negative" as in not detected SVR12
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Katie, we're both down to those last 2 weeks and your post describes how I'm feeling - exactly! Well, maybe not the strange men with hammers and muddy boots - I expect I could find some dust here, though :) Thanks for those healing colors of light - we all need them. Sunrise is right, you are" always the voice of kindness and hope". Beautifully put, Sunrise. Lynne, I love your doc's instruction to "Think Negative" as in not detected SVR12! Perfect :)
Have a good weekend, send you all hugs ...Islandgirl 8)
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Trapper,
Wishing the best of luck on your results! I am sure it is somewhat worrying for you. We're all pulling for you. Hopefully your virus wasn't as stubborn as mine!
Best wishes and we will be seeing your Undetected soon!
Brad
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Trapper,
Lynne's input on F3 not being not quite cirrhosis made me feel better for you being on the 12wk tx, hope it made you feel better too - great to have someone who can explain these things (sounds like you were able to start tx at a good time). Sending you positive healing thoughts and wishing you (and everyone) a Happy Valentine's Day! Looking forward to seeing your test results and hearing that you are undetected 8) ...Islandgirl
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thanks brad and islandgirl. what lynn said did make me feel better and I did ask my dr about the chirosis and high vl which both call for 24 weeks of treatment now. He thinks i'll be ok and I hope so. they changed protocol right after I started treatment. I think ins. co. should of upgraded everyone on old 12 week protocol to new one without hassel providing you are still on treatment. Now it seems like people with chirosis and well advanced hcv are relapsing and having to go through 24 weeks of more treatment and more costs to ins. co's. has anyone seen any stats on 12 week vs 24 week relapses on any treatment or is it to early yet. later trapper
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To clairfy for others who may be unsure
http://hepatitiscnewdrugresearch.com/staging-cirrhosis.html
Fibrosis:
Stage 1 none or mild peri-portal fibrosis
Stage 2 peri-portal fibrosis with/without extension and portal-portal bridging
Stage 3 portal-central bridges but no nodular formation
Stage 4 probable or definite cirrhosis
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Thanks for the link Lynn, a lot of good info. later
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Good news!!! Got my 12 weeks post treatment lab results that show the HepC virus UNDETECTED, thank you Jesus, thank you doctors/nurses, thank you scientists/researchers, thank Lucinda and thanks to all of you guys on this forum!
We are WARRIORS and HepC will soon be a disease of the past for everyone. Praying for all!
Much love,
Sharon
Genotype - 1a
Liver stage - 3/4
Infected (transfusions) - 1983
Diagnosed - 2003
Treated with Interferon/ribaviron twice 2004, 2006, stopped early, relapsed
Treated with S/O August 2014, 12 weeks
Cured/HEALED! February 2015, 12 weeks post
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Wow Sharon!
That is great and fantastic news! Congratulations!
May you have a long, happy and healthy life!
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Such Great. News word!
I'm so happy for you! You must be so relieved as well as excited. This is a big one. Will you get a 24week post tx test? Happy tears you. Enjoy your new status!! undetected. Yayayayay!.... blessi.g Sunrise
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Sharon, YOU GO GIRL! What great news and an inspiration for all of us following you. Happy for your success and for everyone!
Katie
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FANTASTIC!!!! I'm so happy for you!! Every confirmation of UND is a VICTORY for us all! thanks for sharing :) ...Islandgirl
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Hi everyone
I don't know if i'm the only one, but my joints hurt so much. I have trouble walking. This has been happening ever since tx. Let me know if same thing is happening to you....blessings. Sunrise
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Hi Sunrise, Lots of us are complaining about joints hurting. I already have issues so it is difficult to tell if the treatment is making them worse but there are others who are definitely noticing it. Check the Side Effects thread.
Sorry to hear you are suffering! I am thinking since I can barely walk and my knee brace isn't even helping maybe the treatment has increased my joint issue too. I also have a severe pain from my right shoulder up into my neck which is definitely new, and I use my tens unit to relieve it. That has been reoccurring throughout treatment. It hurts so bad I can hardly breathe.
Katie
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Hey Katie
I feel you. Hope you feel better also. I am in fear as i hope these issures subside.Going to work is hard as i stand the whole time. Thanks for responding. Sure helps to get some feedback.. Sunrise
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Hey Katie
I feel you. Hope you feel better also. I am in fear as i hope these issures subside.Going to work is hard as i stand the whole time. Thanks for responding. Sure helps to get some feedback.. Sunrise
Oh Sunrise, I can't imagine all of that standing. I certainly wouldn't be able to do it. This past week I have had to go in and out of my shop so it is up and down stairs (only 4) but it really has done some damage doing it every day all day for the past week. The guys putting down the floor and trim have been great but I did a bunch of the prep work and of course the moving of everthing before so my joints are feeling it. Could hardly get out of bed this morning. They are gone now...<Big Sigh> and I am going to take a day off with my clutter and then have to paint the one bedroom. I did have them paint the ceiling and so the walls will be easy...and I like painting. ::)
I hope you are wearing good supportive shoes and is there any way you could have a high stool to sit on periodically? I don't know what you do at work so that may not be an option but even if it was just for a few minutes here and there it could give some relief. A full body massage might benefit you too, and I go for acupuncture and it has saved me over the years with my back and even helped my knees and feet. I know all of these special treatments cost money and sometimes that isn't an option, but do what you can for yourself. You need it now more than ever.
I'm thinking about you and sending you healing, pretty colored thoughts your way! (like a beautiful sunrise!)
Katie
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Thanks everyone and YES, I am relived!!! It's so good to be finished with the meds even though S/O was nothing compared to treating with interferon/ribaviron twice. I'm really sorry that some of you relapsed, I've been there in the past, but hang in there - your cure is coming, for sure!!! I will see my doctor on Monday and discuss follow up for labs, etc.
About joint problems, sorry some of you are having pain, my joints hurt so bad I had to get into physical therapy, much better now. I am still having some problems with my eyes burning, but they're getting better too.
You guys are wonderful, stay strong, we'll all be doing the "Happy Dance" real soon!
Blessings,
Sharon
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I had tests done at 8 weeks due to some issues with bloating I have been having. ALL of my levels were well within the normal range. The lab accidentally tested for Hep B, so I had to be retested for Hep C viral load at 9 weeks. I found out last week that they are still undetected!
I have been taking Prilosec the last couple of weeks and am starting to see real improvement with the digestive issues. I still have to believe that the treatments contributed to those issues, but the good news is that it doesn't appear to be related to my liver, but rather irritation with my stomach lining.
I went this past Friday for my 12 week test and I hoping to find out next Monday that I'm undetected at the 12 week mark.
Praying that we all will be healed and on the road to good health.
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Thanks Katie
I do need a massage thats for sure. I am a Barber so i just work mornings which has effected my business, but if people don't understand, at the point of tellin then screw off. I sure can't tell them i have hepc and took strong drugs to try to cure me. I would be out of biz completely. So i tell them i have back issues, which is true, so i cannot work all day. Good luck getting help, no skilled labor around here. Im so thankful to have you all here for support.
So wordforthewise
Really glad your feeling good, and still UD. That is encouraging.
and bh4sons, best wishes on your test results. I cannot believe its going so fast. My 12weeker is coming in less then 4weeks!
Thanks for the responses , blessings. Sunrise
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Hi bh4sons
I hope you are taking the PRILOSEC at the same time as the Harvoni on an empty stomach per the prescribing information sheet table 3 page 5 instructions
http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf
Potentially Significant Drug Interactions: Alteration in Dose or Regimen May Be Recommended Based on Drug Interaction Studies or Predicted Interaction
Proton-pump inhibitor doses comparable to omeprazole 20 mg or lower can be administered simultaneously with HARVONI under fasted conditions.
Best of luck on treatment
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Good news!!! Got my 12 weeks post treatment lab results that show the HepC virus UNDETECTED, thank you Jesus, thank you doctors/nurses, thank you scientists/researchers, thank Lucinda and thanks to all of you guys on this forum!
We are WARRIORS and HepC will soon be a disease of the past for everyone. Praying for all!
Much love,
Sharon
Genotype - 1a
Liver stage - 3/4
Infected (transfusions) - 1983
Diagnosed - 2003
Treated with Interferon/ribaviron twice 2004, 2006, stopped early, relapsed
Treated with S/O August 2014, 12 weeks
Cured/HEALED! February 2015, 12 weeks post
Hi Sharon,
SVR ACHIEVED! CONGRATULATIONS!!! I am glad to see you return to the forum with this news! Thank you. As we share our struggles and successes along our journey, it is nice to see the thrill of triumph!! So many fade away never to return. Thank you for sharing your experience. There is a smile on my face and it feels nice! Sincerely
Brad
(we started treatment one day apart)
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Hi Lynn, I should have been more specific. I am 12 weeks post treatment.
Sorry, I had posted earlier in the thread. I originally had a false positive at 2 weeks post treatment (a count of 600). I was retested at 4 weeks and was undetected.
So, the test I just had last week was my SVR12 test.
Thanks,
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Well even better news woo whoo that is great congrats!
Man if there is anything I want to do after I finish treatment is take a prilosec. I had an upper endo Friday where they said I had mild inflammation from my heart burn. No doubt about that lol
Also great news for those who get a test result like your 2 week post treatment that the battle is not yet lost.
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Thanks Lynn.
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Hey Brad
Hope you are doing ok. What is the latest with doc and tests? Any word on when you start new tx?
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Hey Sunrise,
Hope to be seeing Hepatologist soon to discuss further options. My enzymes are still in normal range. They fell way back into the 20's 1wk into treatment so I at least have the benefit of 6 mths of rest. I'm sure my liver is thankful for that!
I am doing fine, a little bummed yet but pressing forward! Hope you are doing well also.I am looking forward to your CURED post! Take care and have a great day!
Brad
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Thats good to hear Brad
At least you will be dealing with a physician that specializes in our disease. I'm happy to hear your enzymes are within normal levels, and hopefully they will not change by ths time you start your new tx.
Thanks for the well wishes. I just wish i felt better. I still have pain on my side and my joints hurt. Just hope I cleared the virus and these sides go away. I am praying. Best wishes.. Sunrise
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Brad thanks for your support and thanks for encouraging me to share my good news. You guys are wonderful and I feel so blessed! Sorry I took a few days to post but I was praying for strength and courage for you and the others who relapsed. I am standing in agreement with you and others that your cure is coming - soon! To all HepC warriors,
They the wait upon The Lord shall renew their strength;
They shall mount up with wings as eagles;
They shall run and not be weary;
And they shall walk and not faint.
Isaiah 40:31
Much love to you all,
Sharon
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got my 4-week post labs back today without hcvqt test. they didn't see it marked on order. will have Tuesday after reeming ass for wanting to take 30 days to get it. I had a question on alt and ast.
pre-treatment alt 122 pre-treatment ast 64
4-week test on s/0 39 4-week on s/o 20
8-week test on s/o 29 8-week on s/o 24
4- week post test 51 4-week post s/o 31
Has anybody had a rise in ast and alt 4 weeks post treatment. they are still in normal range. has anyone who relapsed on s/o have this happen or do the numbers move around anyway. Makes me wonder if its a precursor to relapsing.
thanks trapper I guess I will find out maybe tues or 12 week post labs.
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Hi Trapper, My understanding is the ALT/AST are not necessarily an indication of hepatitis but just shows the liver may be dealing with something as well as other organs, which could also cause the raise. I wouldn't doubt that when you quit the S/O your liver reacts to it so at this level I wouldn't get too worried. You'll find out Tuesday with the viral load. I know my doctor also mentioned way back when that they pay attention to the ratio of the two, but not sure what that means other than if one is really high and one normal, that also indicates something.
Good luck on Tuesday. Hope it is good news and you can relax. Be sure to keep us informed and we'll be sending you healing energy!
Katie
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Hi Trapper
All I can say is when did my 12 week post Sov/Oly test I got my liver function test back first before the viral load and my ALT that was 29 on treatment had jumped to 56 above normal 12 weeks post and when I got my viral load a few days later I had relapsed.
I hope your numbers have increased just as an effect of stopping the meds but just thought you would want to know.
Good luck wishing you SVR
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thanks lynn and Katie
That's the kind of feedback I want so I can figure things out. I keep track of my bloodwork and in 11/13 alt was 77, 3/06/14 alt was 114, 3/2514 alt was123, 8/06/14 alt was122, 10/21/14 alt was121, 11/19/14 alt was 39 4-week s/o, 12/22/14 alt was 29, and 2/12/15 alt was 51. Maybe it moves around a bit depending on how you are eating and things like that. I'll find out Tuesday. thanks trap
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Wishing you good results trapper. it can be nerve wracking. For sure,. I will say a prayer for you, I sense your trepidation. Try to stay positive, I as well hope for UD for the rest of my life, and really do not want to retreat, but if that what it takes well so be it. It is a blessing we even have these options, keep us up on your results... Sunrise
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Did SVR4 bloodwork today! All liver enzymes remain normal. Waiting for HCV Quant which should be done on Wednesday. So far so good!
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That's great Picnic
Good luck on your results. It's good to hear. Have a great day!blessings. Sunrise
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I went to the doctor today and got the results of my 12 week post treatment test.
HCV Not Detected!
I'm 57 and figure I've had this disease for 2/3 of my life! After 12 weeks of treatment, it looks to be gone! Pretty amazing.
I go back in 6 months for the next appointment.
Now to get to work on losing 30 lbs and getting back in shape.
I haven't posted much but have been reading a good bit on here and praying for healing for you all and rejoicing with all the successes.
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Awesome news BH congrats!
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Wonderful news BH! I am so happy for you and it is very encouraging for the rest of us. Enjoy your FREEDOM from the alien virus.
Whoooo Hooooo!!!! :-*
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That is such wonderful news! Very encouraging for all of us. Hope for your continuing recovery Bh4sons, and you will be here for your sons. Best wishes on staying SVR forever!!!!Sunrise......happy dance
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BH,
Well done fellow warrior!! Happy for you! Stay healthy.
Brad
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Happy congrats, BH! We share your joy! Best wishes for attaining your health goals and staying SVR forever! ....Islandgirl
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Thanks to you all for the congrats. Praying for successful treatment for all.
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Congratulations to you BH, that is wonderful news!!! I finally got rid of HepC after having for half of my life, I'm 63 now and looking forward to a long HepC-free new life!
Trapper I am praying you will get your undetected news also! We'll all be doing the "happy dance" with you!!! :)
Sharon
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Congratulations to you as well Sharon.
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Just received my 4 week post HCV!! Undetected!!!!! Almost there!!!! Yeah!!!
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Congratulations Larry
That is great news. Especially to wake up to! I bet you are relieved....sunrise
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FIST BUMP!!!
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Thanks Sunrise and Bad Brad!! Any update on new therapy Bad Brad?
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BH were you on Harvoni? Was it 8 weeks?
edit nevermind saw your old posts, you went for 12 weeks.
You must have been one of the first ones on Harvoni.
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Charly8, I was on Sovaldi/Olysio for 12 weeks. I was about half way through when Harvoni came out.
I wish the best for a Not Detected outcome.
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finally, got my 5-week post hcvqt back today. non detected. I like my odds of svr12. later trapper
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YAY TRAPPER!!!!!!!!!!!
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All the way TRAPPER...congratulations!!!
Sharon
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Great news Trapper!
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Hello to all the new (1,200+) forum members who have joined since I last visited. For all of you who have no idea who I am, let me start by saying that I was one of the very lucky and blessed HepC Warriors who in June of last year managed to get approved for treatment with S&O off label. My IDS is wonderful and I still don't know how she persuaded BCBS of NC (Express Scripts) to agree to fork over $162,000 for my treatment but she did it. I only did 12 weeks of treatment because this was what was recommended. As most of you now know it is 24 weeks for someone with a beat up liver (F4). I know that it is kind of rare these days for someone to be prescribed S&O as it seems that Harvoni is the treatment of choice.
My 12 weeks of meds was pretty uneventful except for the sun sensitivity. The greatest moments for me were my lab reports. I was UD EOT, SVR4, SVR12 (some say this is cured) and I go Monday for my SVR24 labs and a definitive "cured" declaration and discharge from the IDS clinic.
It has been a long 9 months but I am thrilled that it is almost over. I have had a MRI and an EGD and I do have a small abdominal varies that requires a follow up EGD in a year. I am still following the healthy liver diet and not drinking alcohol.
My energy level is really up now and I have returned to work after taking a break for treatment and healing.
This forum was a great help to me as I see it is for many of you. Being one of the Warriors who jumped into the unknown waters of DAAs it was scarey at times but there were many members here who supported me and that I got to know, respect and love.
I will post back after my labs next week.
Bucky
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Happy to hear about your good fortune!I am now post svr4 undetected!
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Hi Bucky and thank you for sharing your wonderful news. It's good to hear how the first ones who with S/O are doing. Your story is encouragement for other hepC warriors who are waiting to get their cure, thanks again!
Sharon
HepC CURED, SVR12 on S/O, February 2015
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Congrats Bucky
Hoping you get the hep c free SVR24 news but I am sure you will!
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Congrats Bucky
Hoping you get the hep c free SVR24 news but I am sure you will!
Hi Lynn,
I posted in another thread that I had indeed reached SVR24. I truly hope that you are successful with your treatment and you can get rid of the dragon.
Keep jumping out of those planes and soaring with the birds.
Peace out,
Bucky
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Hi everyone, I went in for my post treatment results yesterday. The lab work was 14 weeks after treatment. I was congratulated and given the results we all hope for.
Negative: HCV RNA Not Detected
I told her I she should have walked in Maury Povich style and opened a sealed envelope with the results. I feel really good for 64 and I really don't know how or when I got it. I think the early 1970's but they had a new pamphlet at the office and it had sharing straws to do drugs so maybe the 90's. I'm just adding that for anyone who thinks there is a safe way to do drugs.
I'll be hoping and praying for all of the warriors.
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Congrats that is great Bucky!!
Now go follow your dreams !
Congrats to you too Ronaldo !
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Ronaldo Another dragon gets his butt kicked! Always makes me smile. Have a great new hep c free life! Brad
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Hello warriors,
It has been awhile, hope you are coming along well since tx. Brad I hope you get tx. realsoon.
I got my viral load test results back. UD!!!!Praise God and all the researchers that came up with these new meds. ...Blessings Sunrise
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That's great news Sunrise! How many weeks is that?
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Hi bh4sons,
This was my 12week post treatment, so things are looking good. Having some other issues, like heart fluttering, Achilles tendon inflamed. Going to doc tomorrowso I will discuss these issues. I am very thankful though as I think I beat hepc!. How are things going for you?...Blessings Sunrise
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That's great news for the SVR12! Hopefully the other issues are temporary and you're on the way to recovery.
I was undetected at 12 weeks. My doctor scheduled the next appt 6 months out, so it will be 9 months when I go in August. I'm still having some digestive issues (which I didn't have prior to treatment), but they are better with Prilosec. My general phys. said to add another two weeks, so a total of 8 weeks on prilosec. Hopefully that will do the trick. If not I'll need to see a specialist about that.
The big thing is the Hep C is gone. My main focus now needs to be getting back in shape.
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you Did it Sunrise. :D I am doing a HAPPY DANCE FOR YOU RIGHT NOW! CONGRATULATIONS! 8)
I hope your health continues to improve and you feel better. Glad you are going to the doctor...do you drink caffeinated coffee? I had to switch to decaf due to flutters and it affected my sleep too. Hopefully it is something easy like that.
I am SO excited that you beat the ALIEN DRAGON and are going to have the best summer EVER!
{{{HUGS}}}
Katie
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Thank you both bh and Katie,
I think your right about the flutters, and I did just get some water processed decaf. I will definitely try cutting back. Think though this weight gain from treatment has alot to do with it.
How are you doing Katie? Good luck with your health journey
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Thanks for asking Sunrise! I am doing good, and go in for another VL test after the middle of April. The new understanding of the EOT low viral loads makes sense to me as each day I feel subtle improvements and I stopped Harvoni a month ago. They'd already be replicating so I figure I feel too good to be sick! Check out Lucinda's post on the Hep C Research forum.
Weight...gaining weight is so easy and taking it off so difficult! Maybe once you get all of your health issues taken care of and having a fun filled healthy summer it will melt off. I am managing my weight and do it better by eating small meals when I am hungry and even break up a meal where I'll eat a salad....wait and have some veggies or protein an hour later. My portions seem to be more controlled than if I let my self get really hungry. If I let it go too long then I tend to stuff myself and am miserable. It seems to work for me. Drinking a lot of water seemed to have helped too, with many things other than the treatment, so I am continuing it. Good luck as we all have to figure out our systems.
Take care and drop in the forum and keep us posted on how you are doing!
Katie
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Best wishes for your next test Katie. Happy to hear your feeling better. Bh4sons, I hope your digestive issues get better. I find when I start getting acid reflux, I drink more water. I had gotten a script for prilosec but did not like the chemistry of it. Hope you can wean off it soon. Katie you seem so wise like a nurse . I will keep in touch, you all as well. Looks like the cure is here ;D
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sunrise
SVR 12
3/23/2015
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Good Morning Sunrise, I thought that post above looked good all by itself! I thought it would make a nice desktop background. I am happy to see this news for you. Nice to head off to work with Joy in my heart!
Brad
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Thank you so much Brad!
I know it feels great to know, only I hope for you the same. When do you think you will start? I hope very soon. Have a great day. I am praying for you Brad, you will beat this soon also. Blessings Sunrise
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I have a friend who took Sovaldi for 12 weeks and his hep c went away. But two months later it came back. Has this happen to anyone? Also I'm about to take Having and I was wondering if anybody took it and had bad result ?
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Congratulations Sunrise, I am so happy to hear your news. I know it's been a long time waiting, but well worth it I am sure. Sleep with peace and wake with new energy for the rest of your life! The smile must be hard to get off you face, wear it well.
Best wishes,
AL
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Nice hearing from you again Al! Feel better!
DSmith: There are so many variables and the tests are not sensitive enough to go to zero. Different tests have different sensitivity levels. If there are a few viable viruses hiding out, they can start to replicate and it is exponential. That's why the post treatment tests are so important for determining if the treatment was successful. Harvoni has a good record and you are on the right path. Good luck to you!
Katie
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Thank so much . Im going to take my Harvoni in another week .
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Hi Dsmith and welcome
Do you know how many weeks you will be taking Harvoni? Have you ever treated before? Do you know your Genotype most likely 1A or 1B? Do you know if your liver is still ok or has it been damaged from hep C?
This kind of information and we can know more about how to answer any questions you might have later on.
We can also find clinical trial results based on people similar to your situation to see how the results were but for most treatment naive with minimal liver damage the results have been outstanding in the high 90 percent range to 100% 12 week post treatment sustained viral response also called SVR 12 which many called cured or at least by SVR 24 if the virus hasn't come back by then it is not coming back.
Good luck on treatment
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Thank you so much Al, I was almost numb when I got the call. It seems surreal to finally be rid of a bug that has been sharing my body for 24years! Now it is time to recoup my health as in losing weight and recovering from this joint issue.
dsmith, what was your friend using with sovaldi, as it is not used as monotherapy. Relapse unfortunately happens a small percentage of time, depending how damaged the liver is, whether used drug interaction meds while on tx. Other variables as well. I wish you and your friend the best. I pray we all clear this beast.... Blessings Sunrise
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Oh Ill be on the 12 weeks program and im Genotype 1b with Hypothyroid . Plus im sixty years old . I got mines through blood transfusion.
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Hi dsmith
I don't know how or if hypothyroid issues would affect treatment that is best left for your doctor to answer. Unless someone has similar and knowledge about it.
Your age should not be a factor we here are all over the chart as far as age. How you may have gotten hep c has no impact on treatment and doesn't matter especially here.
What does matter as far as things that relate to treatment results are have you ever tried to treat hep c in the past or are you what is called treatment naive?
Have you had a liver biopsy, fibrosure test, or fibroscan test to see if your liver has any damage if you have any scarring of your liver or have you had enough scarring to have liver cirrhosis?
I hope your liver is still in good shape makes everything better for you and that you have an easy and successful treatment.
Good luck
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Good morning warriors,
Well I am back. It has been 3months orf trying to recouperate, and what a trying time it has been. I take my 24week post tx blood work in 3weeks.
Still having issues, like acid reflux from hell. Working on the weight loss, and trying to deal with joint issues. All in all, I am doing ok. That fact that my liver is healing, and so far SVR is worth it. Hope you all are doing ok in your journey, and will all be cured! Bleessings my fellow warriors
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Hi Sunshine, sorry your not feeling your best but I can relate, had joint pains during and post treatment since November 2014, also still having some sun sensitivity. But your right it's so worth the discomfort to have SVR. Joint pains, etc. shall eventually pass. God bless you all,
Sharon
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Hello All,
I wanted to check in and see what was going on especially with those of us who were treated very early with S&O. It seems that Harvoni has stolen the spotlight but maybe not all the thunder. I am still very very thankful for my wonderful IDS who got my meds approved and got Express Scripts to pay the $162,000.00 for them without any trouble. I still feel like I slid in under the wire for easy approval as ES more or less slammed the door, well maybe left it cracked a bit for the people that followed.
It has almost been a year since I started treatment for 12 weeks (06/16/2014). UD @ 4 weeks , EOT12 weeks, SVR 12 & 24. So now that I am about 36 weeks EOT there are mostly good things to report.
My energy is still improving and since I now won't explode in the sun, I have gotten my yard straighten out from the summer of neglect that it endured last year. My legs and back ache but it is the good hurt from over working them.
I did end up with a strange area of fat under my chin that my IDS thought might have come from the big O since it is a PI. It has now faded and my jaw looks like it did pretreatment.
My PCP ordered blood work the first of this week and my liver & INR panel came back normal...Yea!
After starting treatment I posted about having improved eyesight. Well today I had an eye exam and in the same glasses that I was 20/20 before treatment I am now 20/15.
All and all everything is going well.
Bucky
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Nice to hear from you again Bucky and CONGRATS on continued SVR and everything else!
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Hi everyone,
Sounds like you are doing great Lynn, cured! That is great! I know I am being silly, but I still worry that I will relapse. Finally had to take omaprazole for acid rflux which I I never had prior to tx. Also.the joint pains are still there. Bucky sounds like you came thru like a champ! Wordforthewise, best wishes for you also... Blessings Sunrise
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I did just get my viral load today you likely saw on the Harvoni thread.
Yup SVR 4 woo whooo!
Yeah I will likely be looking over my shoulder for a long time after the 12 week the 6 months and 1 year tests. But logic tells me if I make it to 12 weeks all is good and chances are very good I will make it to 12 weeks SVR
Best to all
I so missed my prilosec on treatment with Harvoni I have GERD and a hiatial hernia.
I just about kissed the first prilosec I could take post treatment
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Yeah @Lynnk!!!!! So happy for you!!
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Lynn, Congratulations my little Squirrel Buddy! I can't remember, but how many weeks out were you when you relapsed using S&O?
I went to my PCP between the visits EOT 4, EOT 12 and EOT 24 and just had liver panels preformed. My insurance covered it as it was coded preventive and it sure helped me cope with the wait. As you know, normal panels are a very good sign that all is well.
Bucky
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I did just get my viral load today you likely saw on the Harvoni thread.
Yup SVR 4 woo whooo!
Congratulations Lynn! This is encouraging news for S/O relapsers. It is good to see real world success on retreatment. On to SVR 12!
Brad
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Lynn, Congratulations my little Squirrel Buddy! I can't remember, but how many weeks out were you when you relapsed using S&O?
I went to my PCP between the visits EOT 4, EOT 12 and EOT 24 and just had liver panels preformed. My insurance covered it as it was coded preventive and it sure helped me cope with the wait. As you know, normal panels are a very good sign that all is well.
Bucky
LOL squirrely as ever ;D
I was only tested at 12 weeks post I had no testing between EOT and 12 weeks last time.
Yeah my 4 week post liver panel was normal this time and then not detected on the VL.
Last year the liver panel my ALT was slightly above normal and then I got my viral load.
Bet you anything I relapsed by 4 weeks last time on S & O
Good luck to all
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I am new to this forum. I finished tx w/ S&O on April 9, 2015 w/ virus undetected. Will be doing 3 month follow up in July. Had minimal side effects during tx but am now having various gastro problems, and my lipase has been up and down. How did they find your stomach inflammation? Also having irritating muscle fatigue/pain, esp. in thighs.
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Hi Tapetta,
Best wishes on your SVR. Yes the muscle.pain has been awful, since the.middle of.tx, I started noticing a lump on back of ankle, it has affected my Achilles tendon . Since EOT which was Dec 2014, I has spread to both ankles and also my left heel. Some days it is hard to walk. Acid relux, which I never ever had before tx, I had gotten so bad I am now using zantac, as omeprazole is scarey sides of their own. I am having to go back to doc with these issues. He is concerned as since tx. My heart has been acting strange as well. Best of luck on your journey. Next week 24 post tx bloodwork.. So far.SVR thank God. Will let you all know how doc visit goes. He wants tests.....ugh
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Hi Sunrise- I began taking a smoothie of fresh papaya-3 to 4 heaping spoonfuls;1/3 cup aloe vera juice (from inner stem);1 tspoon turmeric spice;1 emergency C vitamin pack;1 hunk of fresh ginger; 3 or 4 big globs of unflavored,no sugar greek yogurt;handful of kale or spinach leaves;sometimes some banana and or blueberries;a heaping tablspoon of Benefiber;and a lil orange juice,ice; on an empty stomach every morning. I also take papaya enzymes after a big meal. I also drink a full glass of water on the hour.I am beginning to see some improvement in my gastric issues, tho not much in my muscle aches or my mood swings. I find it odd that there is no mention anywhere! of ongoing after- results of any of the clinical trials with S&O. I do realize HOW Fortunate we are to have this tx and hope that time will abate some of our aftereffects. My biggest concern is my fluctuating lipase and hope that I will get results from gastro doc ( consult on 6/29/15). I did extensive research on natural healing for chronic irritation,as I feel that is part of my problem. Hoping your doc visit goes well. With up-most kindred support to all of us warriors, Tapetta
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Thank you Tapetta
I bought a papaya today so i will cut it up and use accordingly. I forgot about the papaya enzyme! It is good for the digestive tract you are right! I will update on doctor visit. Oh I found that magnesium gel, mixed with coconut oil rubbed on my joints that hurt, seemed to help immensely. I got.the tip speaking with my cousin that has MS. She swears by it for when she gets spasms in legs. Best wishes on recuperating from treatment.... Blessings Sunrise
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OK THIS IS IT 24POST TX RESULTS UNDETECTED!!!!!CURED CURED CURED!!!!!
I want to thank all of you fellow warriors for being by my side thru all of this. I have.learned many things here on these forums. Again Thank you, and wishing all of you a speedy recovery BLESSINGS Sunrise ;D
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YAY Sunrise! I am so happy for you and I sincerely hope you heal and have a wonderful healthy life! This is such wonderful news!
Happy Dance for Sunrise happening Right Now!!!!
Katie
Thanks for the heads up on the magnesium gel/coconut oil. I need to check that out. Do you think it works for arthritis?
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Finally, got 24 week post s/o treatment labs. NOT DETECTED PERIOD. what a relief. I've been worried since end of 12 week treatment and hearing of other people relasping. I was on old protocol and really should of been on 24 weeks (new protocol) because of 23 mil viral load. But it worked and I'm grateful to be rid of this beast. Don't know if I feel much better but I'm not so fatigued as I was with hcv. I seem to have a problem with getting motivated to do things. I live in the sw and the heat really bothers me anymore. I'm 62 so maybe age has something to do with it. Im f3 so maybe my liver will regenerate some in time. thanks to everyone on this form and wish you all cured. thanks again trapper
f
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Great news folks on the SVR24 not detected! I actually didn't have a 24 week appointment, but have my 9 month Aug 24th.
I did find out what was causing my digestive issues. I had an ultra sound, which showed my gallbladder was non remarkable. However, son's Father-in-law is a surgeon and said I might have Biliary dyskinesia. There is a special test (Hyda Scan with CCK) that I had done as a result. It showed my gallbladder had an ejection fraction for 7% (normal is 35-50%).
Anyway, I'm having my gallbladder removed and they'll do a liver biopsy while they're in there.
This is probably more than most folks want to know, but just thought I would share, in case other might have similar symptoms.
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Thank you so much Katie, Trapper and BH4sons!
I truly am happy for all our outcomes being non detected. Best of luck on the gall bladder removal bh. I am currently trying to overcome my side effects I believe was caused by tx. Acid reflux from hell, I am using digestive enzymes and pro iotics. So far so good. I am on my second day without having to use Omeprazole, thank goodness. Katie the magnesium seems to help with crampiness and pain of joints I dont see why it wouldnt help. At this point I am able to be off all pbarmacuticals. Hopefully it will stay this way. Working on weight loss, not easy. Best wishes to all that have been here. Blessings Sunrise
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Sunrise
Congratulations on your OFFICIALLY CURED status! Thank you for your support through this treatment. Round 2 isn't too far away for me. Gotta kick the Dragon a little harder next time!
Trapper,
BH4sons, Thumbs up to both of you!
Continued good health and SVR's to all!
Brad
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Hey Brad,
Good morning and best wishes on the new tx. Thank you for your well wishes. What did you decide with your dotor decide to go with?
Day 3 on enzyme and probiotic therapy and so far so good. Relief thank goodness. Weight loss is in motion, Let us know when you start your tx Brad, we will help get you thru it
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Posted on another thread and thought I would share here as well! Congrats to everyone who has battled and won. BRAD you are next!!
Just thought I would share my happy news that came from my Doctors office at 7:30 AM; I reached SVR12!!!
I have battled the beast and won :)
Post treatment challenges (note that I was actually on treatment much longer than most for a total of 28 weeks)
1. RA Type symptoms started at around week 20 in treatment and just got worse, at week 10 post, they finally started to fade. No RA was detected and they told me it was fibromyalgia
2. As the Pain and RA symptoms have subsided I have been totally exhausted, like mono type exhausted (I really thought the beast was back).
Today I am just grateful and back to work although some days it's really tough to get moving to get there. If I can make it in I can make it for the day so that's my focus. I am trying to walk as much as possible because it's about all I can force myself to do right now but I am hopeful that this will get better as those six plus months of treatment get further behind me. I continue to listen to my body and rest as I can but started to push a little harder to move more.
Stay strong, keep fighting and we will all win this battle.
Mel
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Hey Mel! That is so great! You beat it! Was wondering whatever happened to you. After my 12week, doc said cured, but I was apprehensive until my 24week test came back UD! Halelujah!!! I have the same issues with joints in feet ankle and legs. As I am losing weight.and doing things it is slowly.improving. Good luck Mel, glad.you are on the UD train!!!!
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Beast you made it!!!!!!!!!!!! Join the club!! Picnic
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Hey Mel I am so glad you won this battle! I did not want to see you have to go through retreatment. You are a survivor. I am Happy for you!
My Retreatment journey has been anything but uneventful -
Feb. - Relapse
Apr. - Hepatologist recommends Harvoni/Riba 12wks
Apr. - Harvoni rejected, Viekira Pak approved (Express Scripts)
Cannot retreat on Viekira Pak -Protease cross resistance issues having failed S/O
May - Requested Harvoni, Request Denied (F3 - F4 fibrosis required)
June - Researched treatment strategies, etc. Request for Fibrospect
June 28 AASLD updates treatment guidelines to include retreatment for my profile
It is Harvoni/Riba 12wks (one less reason for a denial) Plan is to appeal denial, if second denial go to "My Support Path" and try my luck there.
July 1st - "My Support Path" cryteria modified - no longer providing medications for patients with insurance being denied by their providers for unmet payer cryteria, prior treatment failures,etc. etc.
Gastroenterologist says NS3 resistance variances will revert back to wild type in 1 yr. It is hinted that I retreat on Viekira Pak (probably to avoid hassles of appeals)
AASLD advises against this retreatment regimen for my profile
July 28 - Denied request for Fibrospect (considered experimental/investigational and therefore not medically necessary).
So this is where I stand on this 5th annual World Hepatitis Day!
GOOD GRIEF
Brad
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Congrats, Mel!!!!
On with your new life!
Best wishes, Mike
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Hey Mel I am so glad you won this battle! I did not want to see you have to go through retreatment. You are a survivor. I am Happy for you!
My Retreatment journey has been anything but uneventful -
Feb. - Relapse
Apr. - Hepatologist recommends Harvoni/Riba 12wks
Apr. - Harvoni rejected, Viekira Pak approved (Express Scripts)
Cannot retreat on Viekira Pak -Protease cross resistance issues having failed S/O
May - Requested Harvoni, Request Denied (F3 - F4 fibrosis required)
June - Researched treatment strategies, etc. Request for Fibrospect
June 28 AASLD updates treatment guidelines to include retreatment for my profile
It is Harvoni/Riba 12wks (one less reason for a denial) Plan is to appeal denial, if second denial go to "My Support Path" and try my luck there.
July 1st - "My Support Path" cryteria modified - no longer providing medications for patients with insurance being denied by their providers for unmet payer cryteria, prior treatment failures,etc. etc.
Gastroenterologist says NS3 resistance variances will revert back to wild type in 1 yr. It is hinted that I retreat on Viekira Pak (probably to avoid hassles of appeals)
AASLD advises against this retreatment regimen for my profile
July 28 - Denied request for Fibrospect (considered experimental/investigational and therefore not medically necessary).
So this is where I stand on this 5th annual World Hepatitis Day!
GOOD GRIEF
Brad
What a horrible nightmare Brad! I've seen bits and pieces from you but having it all laid out like this really had an impact on me. {{{{HUGS}}}} When a person has a serious condition, and there is a treatment, what right does the insurance company have to put that person through all the stress and anxiety like they have with you? I am glad you are a fighter and don't ever give up. This just isn't right, period. With the Harvoni results I just can't understand why they are denying you...oh right....money! Damn it! Maybe you could use some examples of cures from this forum. They are here and coming in all the time.
We are here for you and have your back. Wish I had some advise to share and hopefully a moderator can help you!
Katie
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I am glad you are a fighter and don't ever give up.
Katie
From the Log-Books of Captain John Paul Jones -
"I HAVE NOT YET BEGUN TO FIGHT"
Brad
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Hello everyone, I finished S/O ribs on 5th June and Friday 4 Sept I go for 12 week EOT blood tests. Like everyone else I was UND at EOT and just 5 weeks later I had a Fibroscan. Before TX it was F4 score 24, it went down to 12, just at end if F3 stage. S/O for me was no problem, b/p a little raised and palpitations which have now gone. Had a transplant in Oct 2013 but hcv recurred after only 2 months. Waiting for TX here in Italy was v. stressful. I had a high viral load but doc didn't tell me how high, he knows I'm anxious and I consider him an amazing person. I had hcc before transplant which didn't cure with chemioembollization (?) so it was an emergency transplant which went perfectly well. Re Roger's post, I know exactly how he feels but it's true, I, like him, got scared to death a couple of weeks ago reading these posts. zSpent entire afternoons looking for some good success stories, perhaps those who got cured just don't post? They have a new life? I looked relapse in the face, cried a bit, mainly cos I have a 22 year old daughter who would be left alone, thought about further treatment, perhaps Harvoni, then after a few really bad days, I put it away and went down to the beach, had lunch out with my friends, swam a lot and started to feel physically like I was just a girl. Today I peeped back here and found some success stories on S/O and decided to come out of hiding. I think if you haven't had a transplant you can't understand how it feels
like I never had interferon so don't know. Treatment was really a piece of cake for me, no sun sensitivity, full of energy, apart from near the end. I have been praying a lot, yes. Now I try not to think about Friday as when I do, my heart races. I mean can you tell from your ALT AST and other results whether or not you're still UND? Or do you have to wait until the viral load test comes back in a few days? Wow, this could the best or the worst day of my life. Hugs to all of you
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Molly,
I too am a transplant patient. Hep C caused liver cancer. It will be 10 yrs in November. I had hep C return after transplant but it recurred only mildly. I was treated last summer with s/o for 24 months. Thank God I am now cured 12 and 24 week post UND. I heard that liver enzymes start to rise when you relapse. I will pray for your UND on Friday. Stay in touch! Larry
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Hi Molly, I am praying for you as well. Feel confident as usually relapse will happen by the 4week mark, so I think you got this. Hi Picnic!Good to see you are doing well. Mel congrads!
Now as for me I wonder when the inflammation in Achilles tendons and now left heel will go away, as well as my terrible acid reflux. All happened since treatment. I did develop Achilles inflammation during tx, but dr of course did not know what was going on. I just now got a referral for orthopedics and I have been off tx since end of year. Oh well, just keep plugging everyone!!!
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Oh and Brad! Give em hell. You need to get your.treatment going already. What is their problem? Makes me so angry.....
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Hello members, I thought that I would check in since it has been several months to let you know what's up. It has been over a year since I finished my treatment and I have learned a few things. I had a MRI the first of the year for cancer screening and recently I had an US for further monitoring. My liver and spleen have both shrunk. My liver is now in the upper limits of normal while my spleen is still a little large. The radiologist pulled up my scans from over a year ago and he said that I had better blood flow and it appeared that the portal hypertension wasn't as bad because the smaller veins in my liver and spleen did not have blood tiring to use them to get around the main veins. I took this as very good news.
I received the report of the US online and the last sentence stated:
US ABDOMEN LIMITED - Final result (08/28/2015 3:01 PM EDT)
Impressions:
Cirrhosis with findings compatible with portal hypertension. No focal hepatic lesion identified. Please note that the ultrasound sensitivity for detecting focal lesions is decreased in the background of cirrhosis. If there is a clinical concern for focal liver lesion (like elevated serum AFP levels) a triple phase CT or abdominal MRI should be performed for screening.
They have the latest US equipment where I am seen so I was a little surprised by this statement. I contacted my gastro and he said that yes indeed the US has a difficult time picking up small focal lesions when someone has cirrhosis. If this is the case as long as my liver panels remain normal then I am going to just monitor (with my gastro's approval) my serum AFP levels and stop the Ultra Sounds. It seems like a waste of money to me if it can't spot focal lesions.
Has anyone run into this or heard this information about their US?
Bucky
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Hi Molly, I am praying for you as well. Feel confident as usually relapse will happen by the 4week mark, so I think you got this. Hi Picnic!Good to see you are doing well. Mel congrads!
Now as for me I wonder when the inflammation in Achilles tendons and now left heel will go away, as well as my terribl tue e acid reflux. All happened since treatment. I did develop Achilles inflammation during tx, but dr of course did not know what was going on. I just now got a referral for orthopedics and I have been off tx since end of year. Oh well, just keep plugging everyone!!!
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Mollythedog Here,
Hello Larry et al. So you know about transplant! Well today, Friday, I discovered...relapse. Liver enzymes 284 260. What a disappointment. I've been so fit and healthy and full of energy, feels like a joke in bad taste. I guess I suspecyas others with only 12 weeks s/o and low dose riba had failed before me. Feels like tomorrow tjhe hospital will call and say sorry, it was a mistake. Blood work, red and white cells, platelets, all gone right up. My doc says he is sure it's a relapse but could be CMV or EBV , common after transplant. I know it's a failure. Need your support to be psychologically strong, to stop counting time, to bear this burden with a smile on my face. It will be defeated. Meantime, I don't want it to condition my life one single day more. Does that make sense to anyone? Hugs. Molly
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Molly,
What a bummer. Most of us have had multiple treatments! I have had 4 until the last one worked.I know what you are feeling ,stay strong , keep healthy and keep fighting.Strength comes from knowing that you have to fight to continue to enjoy your family. Don't give up,ever! I will pray for you. Larry
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So sorry to hear that Molly, but with your history I would wait and see what the viral load is. I do not have any info or knowledge on transplants but I am here for you and know you will succeed. New treatments are coming if this one fails. At least your liver was given some help and a reprieve for awhile. Do you still have the energy and fitness? (that is probably difficult to judge right now with the stress)
Sending you {{{{HUGS}}}} and healing light!
Katie
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Hello members, I thought that I would check in since it has been several months to let you know what's up. It has been over a year since I finished my treatment and I have learned a few things. I had a MRI the first of the year for cancer screening and recently I had an US for further monitoring. My liver and spleen have both shrunk. My liver is now in the upper limits of normal while my spleen is still a little large. The radiologist pulled up my scans from over a year ago and he said that I had better blood flow and it appeared that the portal hypertension wasn't as bad because the smaller veins in my liver and spleen did not have blood tiring to use them to get around the main veins. I took this as very good news.
Hi Bucky, Good hearing from you and I agree! This sounds like good news. Have you had a viral load check lately? There have been several of us who cleared after being detected at EOT. I can't remember how your relapse happened.
Keep up the fight and good luck to you!
Katie
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Hello Katie,
I fortunately was cured and did not relapse.
I am in the "recovery stage" now and my strength and stamina are still getting better. My gastro contacted me yesterday and we discussed my concerns about continuing with the USs and he said it was still a good tool to use because it was cheap to do compared to an MRI. He said a mass as small as 1 cm would show up on an US and it also illustrates blood flow much better than am MRI because of the doppler capability.
Since I was treated early with DAAs my progress is being studied along with others to help identify clinical improvement or deterioration post treatment. It appears that I am in the improvement group!
Bucky
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Hello Katie,
I fortunately was cured and did not relapse.
I apologize Bucky. I was thinking of someone else! So sorry and so Happy for you. Sounds as if you are moving in a positive direction and wish you all the best!
I need to pay more attention!
Katie
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Morning friends, Mollythedog Here. Tuesday and must call For my VL today. Still don't understand why, guess there's no because that docors know about. No diabetes. 53 kilos, 5'4", no kidney, cardiac or other problems. Always eaten healthily, stopped drinking alcohol years before I knew about my hepC. Swim and cycled all my life. Transplant went amazingly well, out of hospital within a week. If I didn't do anything wrong why didn't it work? My doc is thinking o retreating with sovaldi daklinza and Riba 24 weeks, don't know why he prefers it to Harvoni. Will it have more side effects this time? Will my poor transplanted liver be up to it? Will it work? I had hcc before the transplant and felt quite well, only had one attack of ascites which went by a drip and never came back. Feel I have to pay for not having suffered with hcv. I didn't know I had it so perhaps that's why. I cried and prayed this morning, woke up crying. It's for my daughter. 23 tears old at Uni, I am her life as she is mine. How will she live without me if this evil virus refuses to go? Sorry everyone, I've nobody who understands except my doc but I can't bother him with my problems of how to cope with this bad news, he has so many other patients. Look forward to some encouragement. Love from Molly (Molly is my dog). Gt1a F4 doc says no cirrosis(?) transplanted 27 Ott 2013, one TX sov/Oly and 400 riba daily for 12 weeks. Eot. Und 12 weeks later relapse.
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Hello Mollythedog, Sorry to hear of your relapse. It may be that with F3-F4 fibrosis you required 24wks of treatment. I'm wondering about your Ribavirin dose. Was that the prescribed dosage or was it reduced? Ribavirin is weight based dosing. I have not heard of anyone being on 400mg.It may be that Riba is a concern with transplant patients. I am not familiar enough with transplant to have an informed opinion on your treatment regimen or a retreatment strategy. As I understand, the AASLD Guidelines recommend retreatment with 24wks Sovaldi/Ledipasvir w/Ribavirin for 1a w/cirrhosis. With F3-F4 fibrosis, I would want to treat as if I had cirrhosis. You said you had F4 fibrosis at one point, I understand that to be cirrhosis. It may be because of the required Ribavirin that your Doc does not want to use that regimen. Again I am not familiar enough to have an opinion on his retreatment strategy but I have provided this link to AASLD Guidelines. I strongly advise familiarizing yourself with retreatment options. I relapsed onS/O 12wks also and my treatment team were going to let me retreat on a regimen that is NOT RECOMMENDED by AASLD because of cross resistance to protease inhibitors. My insurance was going to foot the bill for it. Viekira Pak. The treatment would most likely not have worked. I informed them of this fact and refused the medicine. Probably saved my insurance a bunch of money. Now they are denying me the meds that are recommended. 12wks Harvoni w/Riba.
I hope these guidelines help you. If you have anymore questions don't be afraid to ask. Best of luck. Brad
http://www.hcvguidelines.org/full-report/retreatment-persons-whom-prior-therapy-has-failed
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Hi all...
Just had my 12 week EOT results on Harvoni, and I'm still clear! Yay!
AST = 9
ALT - 16
Viral count undetected.
Will have another checkup in 6 months.
I now have one less thing to worry about in my life. :)
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Hello Brad, thanks so much for your reply, I have been waiting for someone who knows how it feels after a relapse on the "miracle cure". I'm so sorry you still have to wait but it's worth it for the right treatment and not to go through relapse again. My doc said riba wasn't that important for me but he would halve the dose as an extra. I had F4 when the virus came back with a roar and a transplanted liver is more prone to stiffness. He wants to give 24 wks Sovaldi, Daklinza and Riba, probably more this time, as Daklinza is indicated for post transplant patients. Go back on 30th September. Not sure if you have to wait some time before retreating, do you know? Keep pushing for your therapy, you seem to know what you're talking about. How do you live, work, do everything without remembering you have this sword of Damocles over you head all the time? I'm such a happy easygoing person really, I don't want to lose that. Is it possible? Ps. I live in Italy. I'll check out the link. Thank you so much. Molly. I'll pray for you and all of us unlucky ones that we keep strong and don't ever give up.
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Hi Molly,
Adjusting to the news of relapse was a struggle for a time. I had to refocus my attention on retreating strategies so I didn't have the time or energy to dwell on treatment failure. It was one foot in front of the other and keep on keeping on and still is. The struggle now is getting retreated. They are pulling out all the stops and it is very frustrating and maddening at times. Insurance companies here are not quick to approve treatment due to it's extremely high price.
I try to keep this struggle separate from my work life and family life but it creeps in now and then.
As far as waiting to retreat, that is an interesting question. For your retreatment regimen you will not have to wait to retreat as the medicine in particular the Daklinza (NS5A), is a different mechanism of action than Olysio (NS3/4A) protease inhibitor. I'm not clear on weather or not testing for naturally occurring NS5A resistance associated variances is necessary. I do not think it is but again not sure.
For my retreatment....my Doc is trying to convince me to retreat on Viekira Pak which contains an NS3/4A protease inhibitor ( Paritaprevir ), therefore NOT RECOMMENDED by AASLD for retreatment after failing on a regimen containing another protease inhibitor, specifically referring to simeprevir (Olysio). He says that the resistant mutated virus will revert back to "Wild Type" in a year and therefore it will be OK to retreat on this regimen. It will be 1yr in Nov from end of treatment on S/O.
The problem is....I'm not buying into it. Even if it does "revert" back to Wild Type, I'm not convinced of the clinical significance of that. I already failed on that class of drug so why would it work the second time. Also, Paritaprevir, along with the other drugs in that regimen, are all "Low barrier to reistance drugs". I am well aware of retreatment strategies focused on "Different mechanism of action and a higher barrier to resistance".
So that is what I'm struggling with. It is more work for them to do the appeals etc. for the correct recommended retreatment regimen for my profile which is 12wks Harvoni w/Riba. I was denied once for lack of clinical information and denied Fibrospect and then denied fibrosure tests, which would give me the clinical info they are requiring. "Yay" right?
So I will be seeing my hepatologist in about a month and go from there but at this point, a new treatment team is looking like a good probability in the near future.
I hope you get your medicine soon and get retreated. I was so sure I had it beat being UD at 4 and 12 wks on treatment. I tested 12wks after last dose and discovered relapse. It is what it is but having to deal with this additional stress is challenging to say the least. This is why I strongly advise being informed on these new treatment drugs and the guidelines. Not all Docs are totally informed on these new regimens.
Stay positive and keep focused on staying healthy and gear up for the next round. You will slay this dragon.
Brad
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Hi Brad, you sound so weighed up on clinical issues. I try by studying everything official and serious I can find. I studied your link. Below each recommendation there was Class A or B, Level 1, 2 or 3 what does it mean? They don't have the assays necessary for testing for resistances here in Italy. I quite suspect I have Q80k if S/O didn't work. Also I see Ledispavir is an NS5 a and b inhibitor whereas Daklinza is NS5a only. I am sorry it's so difficult for you to get retreated in the US. Personally I think that system stinks. Yes, it is hard to stop remembering every minute that this virus is trying to kill my transplanted liver. Started treatment at almost 6 million VL 12 weeks later 3 million. Like you during treatment I was UND at 4 and 12 weeks. I was and still am disappointed. I don't know if the tx time was insufficient or whether it didn't work due to resistance. I was tx naive. My doc is a specialist in both gastroenterology and infectious diseases, mainly HIV and Hepatitis. He's a very remarkable person, I have a great doctor patient relationship with him. He offered me retreatment immediately and in my situation I can't wait. Although I have no symptoms I must have cirrhosis by now with F3/4. Brad, what we need is inner peace, you are ahead of me, I too want to just work and carry on my normal daily life. I've developed a strange nervous habit of continuously pushing the air out of my chest, I know it's stress but I do it unconsciously. I wish you all the luck in the world and I pray that sooner than you know you're offered retreatment. Take good care everyone, thanks to all the kind people who want to give encouragement.
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Hi Molly
You are right that I am weighed up on clinical issues. That is because at some point I will have to retreat and if I have no other option, I will have to retreat on what is made available. My insurance companies' Pharmacy Benefits Manager "Express Scripts", has chosen Viekira Pak to include in it's Formulary and will not cover Gilead's Sovaldi or Harvoni.
So, I had to spend a lot of time researching to find out if in fact this regimen is a possibility and what my odds are of clearing the virus. Unfortunately, I have not found any evidence that this regimen is possible. In fact, everything I have read supports the AASLD Guidelines recommendations to not retreat on this regimen.
It is exhausting to say the least and it is inconceivable that I should have to convince my own treatment team that this medicine is not the treatment that is required.
I am sorry that I am not as encouraging as I could be. I did not post on the forum for a while because I felt I was a negative presence having relapsed. You will find plenty of encouraging people on this forum. It sounds like you will be starting treatment soon and I encourage you to stay involved on this forum.
Good luck on your next treatment. I will be looking for your posts. Take care.
Brad
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Evening Brad, just wanted to say how important it is for me to speak to someone who knows what the problem is. My doc doesn't appreciate my knowing too much, I sense this, but he's just not used to it. I've been a medical/scientific translator for years and can easy understand everything I read about my disease. I think it's terrible that treatment teams are so unorganized and sometimes, let's be honest, incompetent. The problem here is that we're not updated, even most of the doctors don't speak English and work long hours, they don't have the time to study the latest updates and it's the pharmaceutical companies who step in and inform them on the specific drugs, each one working in the interest of their own company. Just one question, is daklinza a high or low resistance inhibitor? Is Ledispavir more potent? I too felt negative and although seeing success stories with my treatment made me happy for other poor sufferers, it only made me feel even more unlucky, an alien. I fully understand why you don't want another NS3 inhibitor, it's logical, but is Veikira so much cheaper? Have you called Gilead? I believe daklinza is even more expensive. I'm off to bed now, it's getting late. Keep your spirits high. God bless.
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Hi Molly
I have a couple of links for you. Regarding your question about Daklinza, it is a low barrier to resistance drug. I am not sure if it is more potent or less potent than Ledispavir but from what I have been reading it is showing very high cure rates when combined with Sovaldi, for your profile being a G1a High fibrosis, treatment experienced. There is information here that refers to Daklinza being used on patients that have failed earlier 1st generation protease inhibitors and results look very good. Some of this information as you know requires familiarizing yourself with some basic terminology but it is readable. I have learned enough to be able to understand fundamentals but the more you learn, the further it pulls you into the scientifics. Without a professor standing next to you explaining and answering questions, learning is limited. Anyways here are some links.
http://www.nejm.org/doi/full/10.1056/NEJMoa1306218
http://www.natap.org/2015/EASL/EASL_90.htm
http://www.ncbi.nlm.nih.gov/pubmed/24428467
http://www.natap.org/2015/EASL/EASL.htm
To answer your question about Viekira Pak being cheaper - yes currently it is on their formulary as their preferred choice of treatment and have struck a deal with Abbvie for a substantially reduced rate vs. Gilead's Harvoni or Sovaldi
Hope this is helpful.
You have a great chance of clearing with this regimen.
Brad
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Hi Molly
Here is some info on Resistance.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3870547/
http://aac.asm.org/content/54/5/1878.full
http://www.natap.org/2015/CROI/croi_164.htm
http://www.hepatitisc.uw.edu/
http://www.researchgate.net/publication/236223417_Evaluating_the_Role_of_Macrocycles_in_the_Susceptibility_of_Hepatitis_C_Virus_NS34A_Protease_Inhibitors_to_Drug_Resistance
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3554180/
Hope you are doing well. Have a good day.
Brad
Also, another new forum member , chuck3a , has started a new thread " Sovaldi, Ribavirin, Daklinza, for 24weeks".
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Hi Brad,
I've studied all the relative data contained in the links you sent me. The information has been extremely useful in understanding the medical scientific aspects off the new generation drugs. I have been able to understand my doctor's preference for Daklinza as opposed to Ledispavir. As a post transplant patient I must take proton pump inhibitor to protect my stomach from excess acid production due to the immune suppression drugs I must take daily to prevent organ rejection. Ledispavir has interactions with these drugs and is not fully absrbed. I hope your retreatment date is getting near, here, too I need approval and it takes time. I'm really working on not dwelling on my therapy failure, so disappointing. An acquaintance of mine started 2 days after me and is cured. Thanks for all the info. I don't plan on losing myself on forums but it is so nice to have met someone so far away and share experience. It's evening here in Italy and I must start cooking. (very important over here) . Take care and I look forward to hearing news of your retreatment.
Molly
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Hey Molly,
I felt so awful when I just read this thread. My apologies for feeling positive you had beat it. Im thankful though you found Brad, he is so sweet , and really has done his homework huh!Hey Brad! Guess it is still the "waiting game" is still on. Hope you are well. I am still dealing with side effects. Best wishes for everyone, much respect for your courage... SunriseAnd I'd choose you; In a hundred lifetimes, In a hundred worlds, In any version of reality, I'd find… https://t.co/Ka7SDkTltJ
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That last sentence is not my entry, so weird. anyway, take.care
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Hello Sunrise, thanks for your kind concern. Yes, it was so hard to digest. In just 5 days my bloodwork and liver panel were excellent. Stayed UND all through. Don't know at what point the virus came back but I felt great the whole time. I began worrying about 10 weeks post treatment, I had this niggling feeling that it hadn't worked on me. So I was quite impassive when my doc read the results. However, it took almost 2 weeks to stop the stress and paranoia, a lot of prayer. But I'm able to say that today I am calm and relaxed about the situation. I'll take either harvoni or sov and daklina plus RIBA either case, for 24 weeks. I read how hard it is for many to get insurance coverage for retreatment in the US and my blood chills. Here in Italy we're covered if we have F3/F4, have hcv recurrence after transplant or hcc already cured. I've no idea whether or not it will work. I've always considered 50/50% possibility, it's yes or no. Whatever, this monster has had too much of my life already and I don't want to give it another single day. I want to just carry on doing what I do, working, eating healthily, swimming, taking care of my family and doing all that's available to get cured. If it doesn't work, well, we'll cross that bridge when we come to it. If I get s/e this, I got none on Sov/Oly riba for 12 weeks, then I'll just take it in my stride. This is the result of prayer and meditation. Beats any treatment. If I have die from this, I'll frag this evil virus with to the grave !!! But I don't dwell on tomorrow anymore and that's a miracle for me. I follow the posts and I think its great to be able to write about your ups and downs in tx, your joys and sorrows, your success or failure and know that someone somewhere is getting something out for your experience. Brad has been great. He helped me through the initial shock and disappointment. My prayers are for all of you, we will get to the other side of the river sooner or later. Much love
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Hello to all,
Just got my 12 week post treatment. Still negative! Feeling great. Anxiety and insomnia much better.
My WBC, RBC, AST, ALT and Glucose are normal again. Still a little fatter ??? :P ::)
My Platelets are low @ 114. Is this normal?
Treatment was rough on me but I am looking forward to the rest of my life now!
Kate101
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Kate, The first day of the rest of Your life!!! Kinda like a second birthday! Great news on the undetected.
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Hello to all,
Just got my 12 week post treatment. Still negative! Feeling great. Anxiety and insomnia much better.
My WBC, RBC, AST, ALT and Glucose are normal again. Still a little fatter ??? :P ::)
My Platelets are low @ 114. Is this normal?
Treatment was rough on me but I am looking forward to the rest of my life now!
Kate101
CONGRATS on your new life, Kate !!!
kim :)
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Hey Mel I am so glad you won this battle! I did not want to see you have to go through retreatment. You are a survivor. I am Happy for you!
My Retreatment journey has been anything but uneventful -
Feb. - Relapse
Apr. - Hepatologist recommends Harvoni/Riba 12wks
Apr. - Harvoni rejected, Viekira Pak approved (Express Scripts)
Cannot retreat on Viekira Pak -Protease cross resistance issues having failed S/O
May - Requested Harvoni, Request Denied (F3 - F4 fibrosis required)
June - Researched treatment strategies, etc. Request for Fibrospect
June 28 AASLD updates treatment guidelines to include retreatment for my profile
It is Harvoni/Riba 12wks (one less reason for a denial) Plan is to appeal denial, if second denial go to "My Support Path" and try my luck there.
July 1st - "My Support Path" cryteria modified - no longer providing medications for patients with insurance being denied by their providers for unmet payer cryteria, prior treatment failures,etc. etc.
Gastroenterologist says NS3 resistance variances will revert back to wild type in 1 yr. It is hinted that I retreat on Viekira Pak (probably to avoid hassles of appeals)
AASLD advises against this retreatment regimen for my profile
July 28 - Denied request for Fibrospect (considered experimental/investigational and therefore not medically necessary).
So this is where I stand on this 5th annual World Hepatitis Day!
GOOD GRIEF
Brad
So then a request for a Fibrosure test was put in and also denied but a liver biopsy was approved.
I did not have the biopsy. My Gastro wanted me to have another consultation with my Hepatologist so an appointment date was made for early Oct. SLOOOOW forward to Oct. - Visit with Hepatologist netted the original recommendation of Harvoni/Ribavirin 12wks. Waited for almost a mth and no call from anyone and it was day 176 of the 180 deadline for an appeal. Meantime I was encouraged by a forum member -MEL, Bless her heart, to contact Express Scripts. After many on holds, transfers, a couple of disconnects,1 hang-up and just determination and persistence, I was put into contact with a patient advocate at Accreddo. The appeal was made and in its final days of review and She tracked the status for me and was able to determine the day it would be decided. A couple days later she called me with the news that my treatment had been approved. I was in disbelief but grateful! She put in some faxes to my treatment team and with a few more typical snafu's I was finally notified by Accreddo of my delivery date. It was pretty exciting watching the processing of everything on-line. My Harvoni was processed on Thanksgiving morning. It was indescribably emotional! Noteworthy is that I have Anthem, BCBS - Express Scripts. 1 denial and 1 appeal and then approved, albeit significant downtime in between. Also no fibrosis documentation - insurance required F3 - F4.
I began my treatment, 12wks Harvoni/Ribavirin on Sun. Dec. 6 and I actually feel better than I have in months (knock on wood)! I am a 12wks Sovaldi/Olysio relapser.
Lots of frustration over the past months. I have been seeing quite a few approvals in recent days. Lets hope this is a sign that things are loosening up. It is helpful to share some details in your battle for treatment as it may encourage others to press on and be persistent. Do not take NO for an answer. It is unacceptable. Best of luck to all.
Brad
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Congrats on starting retreatment, Brad! And good luck on your Harvoni+Ribavirin combo. That is the combo that cured me. (I wasn't a relapser, but was 3a, which is hard to treat.)
You have certainly been given the runaround.
best,
kim