Hepatitis Forums
Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: Johnny_Wayne on May 07, 2015, 07:45:54 pm
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My Hep C is back. It was detected at the 12 week SVR follow up. AST = 239, ALT = 240, VL 1.7million. I've had hep c my whole life, so when the virus returned, I knew what that felt like. I relapsed at week 9 post treatment. Perhaps this Harvoni is not the miracle cure for me after all. They re-prescribed Harvoni for 24 weeks this time, but naturally, my insurance automatically denies re-treating with Harvoni. I hope they will approve VIEKIRA PAK + Rib this next time.
I took the pills exactly as prescribed, used a new toothbrush every other day, and used a fresh fresh razor every time I shaved.
The funny thing is, I remained completely UND for 10 weeks out of the total 12 week treatment regimen.
I guess now, I can join the ranks of us who have had hopes completely dashed. Wow, after all the paperwork, all the worry, all the phone calls to get approved for this medicine. Here $94,000 later, nothing. Absolutely nothing to show for it.
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Johnny, that really sucks. Can you please clarify this: You say you were Undetected " for 10 weeks out of the total 12 week treatment regimen." Does this mean you became detected in your 11th wk of treatment? But you also say you were detected at the 12 wk svr check (post treatment).
Really sorry about the relapse....
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Sure.
2 weeks into treatment they drew blood. Detected.
4 Weeks into treatment they drew blood . Undetected
12 week EOT blood test. Undetected
12 week post treatment SVR follow-up. Detected.
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Johnny, no testing between EOT and 12wks post treatment?
Whenever this happens, I can assure you, we all feel so vulnerable. Every time we read of another relapse, I know that we all take a big gulp, and the thought 'what, are we next' is never far from anybody's mind.
Harvoni for 24 wks has worked pretty well for retreating, so Im surprised your insurance wont accept it. That will probably change once these results make it out of the Clinical Trial phase. I hope they approve Viekira for you....
Keep us posted.
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My husband is genotype 4, and had a liver transplant and although his enzymes are now in the normal range, the virus is still being detected and he only has 6 more pills to take. We were wondering if he should take the treatment (Harvoni plus Ribavirin) again, to get to the not detected zone. We called Gilead but they said that the treatment is only 12 weeks and that is all they recommend. Are you saying you can retreat with the Harvoni and how long do you wait to take the second round?
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Johnny, sorry to hear that,
Man, I know that must be like a gut shot! We all are desperate to be free from this
Virus. Is there anything that you can think of that could have been a factor in relapse?
Hope you can get retreated fast!
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Thanks everyone for the kind words. I would love to do 24 more weeks on Harvoni, but Tenncare flat refuses to pay for re-treating. I can't think of a single thing that could have caused the treatment to fail. I took the pill every day precisely as prescribed, never missed a dose, exercised, hydrated, ate a great diet, everything else. Reinfecting myself is also out of the question.
Previously, whenever I heard of a relapse, I always wondered if the person missed a few doses, or reinfected themselves somehow, or otherwise varied from the treatment regimen.
I am at a complete loss on why the relapse happened.
God Bless everyone here!
-- Johnny
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We called Gilead but they said that the treatment is only 12 weeks and that is all they recommend. Are you saying you can retreat with the Harvoni and how long do you wait to take the second round?
Suenashed,
I have cirrhosis so my status would be "treatment experienced with cirrhosis". Gilead recommends 24 weeks in that instance. If your husband does not have cirrhosis, his status would be "treatment experienced without cirrhosis". Gilead recommends 12 weeks in that instance.
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Johnny
So sorry to read about your relapse really I am a little surprises they did not treat you for 24 weeks and possibly with Ribavirin for that time or at least 12 weeks Harvoni with Ribivirin.
So I think a Child score of 7 that is also called a Child "B" yeah really surprised they only treated you for 12 weeks. Are you treatment experienced?
Anyway sending you a hug from Seattle
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Thank you for the condolences. Honestly, I think doctors these days only want to diagnose, throw pills at you, then move on to the next "McPatient™.
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Johnny I thought a long time before I posted.
It really does not matter much that the cure rates are over 95% if you are one of the people who find themselves the minority side of that equation. Still sucks just as much. All of us here live with that little nagging worry in the very back of our heads and I am very sorry it happened to you. You did everything right and still are looking at the next round.
The only silver lining here I guess is that there are other options now.
When I present for my End of Treatment exam, I will ask what is our Plan B at my EOT 12 week labs. No grey areas here please. My doc tends to live in the 'let's just wait and see world' and I can not tolerate that. As long as I know there is a contingency plan, I feel OK and can handle what comes.
My favorite Dale Carnegie quote is "Stop worrying and start living" this will be my mantra from End of Treatment and going forward. I tried to add it to my avatar (won't know til I post if it worked that is how dorky I am)
The link is to an article on cancer survivors, but if you substitute Hep C for cancer, you can see the parallel for us.
https://www.amoena.us/Club-Amoena/Daily-Living/When-an-Apple-a-Day-Can-t-Keep-Worry-Away
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sapphire101,
Thank you for the kind words of support. I am hoping to do Vikera Pak (sp?) next time. It looks like Vikera Pak interrupts the virus four different ways. I am sure if I can get on a 24 week regimen this will cure it. I kind of always suspected / expected failure with the Harvoni anyway. One study showed only an 81% 12 week SVR rate for cirrhotics who took the drug for only 12 weeks. In addition, the cohort of cirrhotics was tiny, even miniscule, in comparison with the number of other study subjects. I believe the treatment should have been 24 weeks in order to succeed.
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Hi John Wayne,
I'm really sorry to hear this. I failed treatment before, and was really bummed out about it.
There are a lot of things coming down the pike and you'll get this the next time.
Take a step back, get your perspective and do what the Duke would do: Step forward and take another swing!
Best wishes, Mike
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Hey Johnny_Wayne
Relapse stings for a while. Im still a little sore myself from a recent relapse. I also wondered about adherence issues when I would see a relapse. I think I subconsciously hoped it was that and not medication effectiveness.
Their are so many variables when treating - Genetic host factors, Resistance variances, Drug resistance barriers, etc. etc.
I was almost convinced I had re-infected myself via razor, toothbrush, but I doubt it. I was Undetected at 4,12wks. Relapse 12wk post. My VL was about half of what it was pre- treatment and LFT's still in normal range. Oftentimes when relapse occurs, 12wks post treatment numbers jump up to pre-treatment levels or higher. That is why I suspected a recent re-infection. I am no longer beating myself up and am optimistically looking forward to being approved and cured sooner than later. I am currently waiting for approval for Harvoni/Ribavirin-12wks. The Ribavirin is approved just waiting for the big ticket item.
Sorry to hear of your relapse. Best of luck to you. We will be cured!
Brad
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Thank you Mike and Brad!!
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So sorry to hear about your relapse John. It is always on everyone's mind and now with real life numbers coming in from our forum friends we are facing the harsh reality. I have always figured I won't feel cured until I have a UND at 24 weeks post. I have another test the end of June (16 weeks post treatment),. so we'll see how that goes. (fingers crossed) I've never liked statistics, and I am a biologist, so I am always a bit skeptical but am staying hopeful. I like absolute numbers and of course with treatment trials like these, they aren't possible.
There is a thread where Chaly8 is tabulating the post treatment tests. You might want to post your data there if you feel up to it and that goes for everyone. Here is the link.
http://forums.hepmag.com/index.php?topic=2665.new;topicseen#new
I think it is important.
Don't give up hope as if nothing else, this breakthrough with Harvoni is allowing further studies and the results will cause new and better treatments in the future.
Take care and know we are all thinking of you and here for support.
Katie
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Hi Johnny_Wayne
I am Sorry to hear that.
I can assure you that All of us that are treating feel Punch of what you're feeling. I don't think anyone feels for you, I think we all feel with you on this. Reading your initial post, sort of felt like I was hearing I failed the treatment. Dragonslayer said it best wen he said "we all take a big gulp". I know I did!!!
Again sorry to hear this news. Good Luck
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Johnny
Since your insurance denied you, Do you think you might be eligible to try and use Gileads Support Path for another round of treatment?
or
Maybe someone else can answer that.
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Hi Johnny,
Hearing about your relapse just sends a chill down my spine, as I'm sure it does for all of us. I can't tell you how sorry I am - and scared - because just like you, I think I am doing everything exactly right, and obviously that is not always enough!
I talked to my doctor about my fear of relapse (if I even clear to begin with - I am only about two and a half weeks in), and she said not to worry - there are 15 very promising new drugs in the pipeline right now. She feels very confident there is one out there that will do the trick even for those who relapse.
I know there is nothing we can say to take away the incredible disappointment you feel right now, but just know that we all feel it right along with you! Keep going forward and good luck!! Keep us posted!
Lee
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Johnny,
I'd like to add my condolences to the mix. I too went through this, and finally cured the 3rd time around. A nearly inevitable part of the process includes the often unnecessary nagging question of, "What did I do wrong?" Was it that day that I forgot to take my pill at the precise time (or forgot a day altogether) or wasn't positive enough, did I reinfect myself, or didn't eat right, or ___fill-in-the-blank.
Bottom line, the most likely reason for relapse is explained by RAVs - I am not talking cars here - resistance-associated variants. We aren't yet routinely monitoring for RAVs, and unlikely will unless the tests are cheap. With 95% response rates, it makes sense to treat first and hope for the best. But when these high odds don't net you success, then one can only suspect RAVs. In that case, it is time for plan B. Some docs and study centers have the ability to test for RAVs. You can look up treatment options on the HCV Guidelines http://www.hcvguidelines.org/full-report-view (http://www.hcvguidelines.org/full-report-view).
In the meantime, I hope you don't do the self-blame game that I did - it is a waste of perfectly good time.
Next time, knock 'em dead.
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Lucinda,
Thanks for bringing up resistance-associated variants. My doctor was talking to me about this, but I didn't really understand her at the time. I just did a little research, and unfortunately most of the articles are "scholarly" and difficult to read and understand. Here is one article with stats on Harvoni that includes info on RAVs.
http://depts.washington.edu/hepstudy/presentations/uploads/103/ledipasvir_sofosbuvir_master.pdf
I really appreciate your point, which is that if some of us fail to clear or relapse, it isn't our fault. It is something within our body that is out of our control. It doesn't sound like it precludes us from trying again (like you did) and ultimately achieving success (like you did).
Thanks again. It's great to have you here to answer questions.
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Johnny, I just saw your post! Please know that I truly feel bad for you! I too felt when IT came back, so can totally relate with you. And like you wondered if I did everything right, I think we did all we could for our part of the fight!
I'm with GLCII above who mentioned calling Gilead and telling them your insurance denied your new prescription, maybe they would help you with the new script! It never hurts to ask!
Are you anywhere near a teaching and research hospital? Maybe they are running studies on Harvoni relapse cases. This is what I'm doing next, hopefully you are close to something like that. I know it's easy to say, but please know you did everything right!
Again, I'm truly sorry that this happened to you.
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Re: RAVs..
Its interesting to note that generally, even among those in the study that exhibited baseline NS5A Resistance, 90% or better SVR was generally achieved.
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Johnny, Just a thought, maybe call your state insurance controlling board and maybe they can help you with this!
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TeriH and Johnny_Wayne and anyone else reading this thread who relapsed... I am so sorry, I know it must have been really depressing to receive that news. You have my hope and prayer that strength will find its way to you as well as answers on how to move forward towards another round and may it be easy and successful.
I was wondering if you all would be willing to share your symptoms during the time when you started to realize something was going wrong when you knew you were probably relapsing?
I am one of the people posting in the post-treatment feeling awful thread and have two more months to wait for my first SVR test. I felt okay for a few days after TX then went into hyper drive for a few days then crashed hard with fatigue and feeling like I have COPD or something... (although not as bad as when I first started TX.) Went to urgent care and they found nothing on cardiac involvement but did find a single pulmonary nodule. Assuming it's not very big, I'm waiting to hear back from my GP on when to proceed as I'm so burned out I don't want any more tests anytime soon if I don't have to... sad isn't it?
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Hi WholeFoods
Just for another data point for you I also relapsed last year after treating for 12 weeks with Sov Oly (I just finished 24 weeks of Harvoni and Ribavirin and currently waiting again for 12 week post)
I did not feel any different before during or after treating. I did not feel becoming UND did not feel the virus coming back. I had no sense of anything before I did my 12 week testing.
The first sign I had was my liver function tests that I received the results before I got the viral load back they had gone back above normal and next when I got my viral load back there it was 2.4 million viral load detected.
Hope you get to feeling better and you make SVR
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WholeFoods, I'm not ignoring your question, it's just that I need a little time to figure out how to put it into words. I'll try and post all that I felt tomorrow morning. One thing I can say is it was more than fatigue and lung involvement, I hope that reassures you a little bit.
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Lucinda and others, you might be interested to know that my treatment team is doing "a multi-centre prospective longitudinal cohort study with the aim of collecting and storing clinical data, patient blood, DNA and PCBMs to examine outcomes related to drug resistance, drug monitoring and host genetics in the era of DAAs for Hepatitis C therapy"
They are looking at RAVs, whether they are present before treatment starts, what effect treatment has on them and if RAVs are present, whether they affect the outcome of treatment for HCV with DAAs.
I'm part of it.
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Thank you LynnK and TeriH for your replies, they do help. Thanks for the well wishes LynnK. I've been keeping a diary for whatever reason... sure has been a roller coaster, but I won't lose hope, just wait as patiently and cautiously as possible. Have a feeling nerves will get a bit worse as the day approaches. Ugh! Hang in there ya'll. hugs to you.
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WholeFoods, I took some time to think about this and This is how I knew. After treatment for about a week, I felt super! Then I got the "flu" it was the worst I've ever felt! All of the HCV symptoms I had ever experienced came back like gangbusters! Brain fog, anxiety, can't get out of bed fatigue, and easy bruising and bleeding! I think the bruising and bleeding was my tip off. I'm talking about the kind where you just brush up against something and are suddenly bleeding profusely! Something that should have been a minor scrape, at best! Sorry it took me a while to put this into words, but my mind is good to me and tries to bury bad memories, so I had to think, dang it! ;D I hope this helps to relieve some of you fears and I'm wishing you my best!
Philadelphia, that is so exciting! Please share with us all as you go along! I, for one am very excited to hear any news you can share! I'm in a study here also, but it doesn't start til August. I'm waiting as patiently as I can, so I'm excited to hear any news! All my best to you also!
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Thanks Terih, yes that helps. I apologize for asking such a deeply personal question, but am so thankful for your sharing. Also glad to hear something is being done for relapsers, I've been wondering and a bit concerned. I do the same thing with having a harder time remembering negative things that happen and have more of a forward focused mind. Thankfully, eh?! Hang in there and take good care of yourself!
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WholeFoods, No need for apologies! I'm actually thankful to you for making me think through what happened. It may help for folks to know that wasn't just a thing or two for me when it came back, so thank you! I'm taking good care of myself, you do the same! And yes, the Docs and reseachers seem to have backup plans, that they're not sharing with us, just yet!
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I am a newbie here as of yesterday, receiving my first BCBS appeal denial also yesterday and spending most of today working on strategies for my next appeal. My question is this: I am being treated at an academic center -- should I talk to my doctor about these RAVs before fighting tooth-and-nail to get Harvoni approved by Gilead or the insurance co at my next visit next month? I am so very sorry to hear about the relapses, hadn't heard this before today. I'll read more on the link to the RAV literature, as this appears to be another piece to this complex puzzle. Thank you for sharing your news, it's very important; maybe getting into a clinical trial is the way to go to get as much data out there as possible. I think one is reasonably close to me, will look further into it. My prayers go to each one of us in this fight, we have to hang in there!
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I want to add my voice to say how sorry I am for you who relapsed. As others here have said, we all take a big gulp, get shivers down our spine....
I'm 3 weeks EOT and will get first VL on the 18th.
Truly, you did everything to help Harvoni knock this virus out. In time we'll have a better understanding.
Indeed, Philadelphia, keep us posted on how the study goes.
Sending healing and hopeful thoughts to everyone.
Meg.
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FutureThinker, Sorry it took me so long to find your question again (thanks brain fog!) Have you been treated before? Since I had Harvoni, they tested me for NS5a and some other things. I don't know for sure, but if you haven't treated maybe RAVs aren't a problem, hopefully someone who knows for sure will come along to answer that one!
Have you found out about any trials that you can enter? If not, my 2 cents is that I would fight til a standstill for Harvoni, I almost wish they had just put me back on it for 24 weeks! But August will be here soon! And I'll let everyone know what they are doing with me or to me!! ;)
I guess what I'm trying to say is, don't let the relapses keep you from treatment, your chances for a cure are way, way bigger than the chance of relapse! I'm seeing so many people reach SVR and it is awesome! Hope to see you posting about treatment soon!
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TeriH -- Thank you for the reply, and yes, you're reading between the lines in my post correctly, I am questioning what should/can we all do to try our best for a successful outcome other than the obvious (diet, exercise, low stress, etc.)? I am treatment-naive, dx'd 4 years ago with 1a and have been stable with labs until this year, when my VL went from 5 mil back up to 15 mil and my ALT/AST also increased by ~ 20 points (69 & 52). I was mentally ready to start this, but BCBS isn't budging on the requirement for F3+ fibrosis. I increased to F2 this year since F1 biopsy several years ago. They also will approve the Viekira + Riba, but Harvoni is my first choice (as it is for most of us). I need to read up more on everyone's experience with the Viekira. And, I think there are some trials not too far away, just need to look closer at those, too.
I did a little searching on the RAVs and it's not "easy reading", so you may be correct that it's primarily important for experienced patients. If anyone can shed some light on this, I'd appreciate it.
The news of relapses w/ these new DAAs brings up the question, in my mind, of the possible need for additional tests before treatment, vs. the assumption that "the patient just didn't take the meds correctly", etc. These drugs are very, very new -- Harvoni has just been on the market 7 months, w/ Viekira just 5!! There is still a learning curve on these treatments.
Lots of decisions we are all having to make. I am very interested in your trial in August, so please keep all of us informed! I'm going to keep asking questions and reading. Thanks again to all who are helping us understand all of this.
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Stay pro-active and if your doctor is in favor of Harvoni, then I would ask him to write to the insurance co. and put some pressure on them. That has seemed to work for quite a few. It is like so many other things where they do a denial at first, hoping you just accept that.
In the past, for other treatments, I had to file a challenge on almost every treatment I had. Since I live on an island and transportation out of state is only by flying or a ferry to Washington State, our medical costs are higher here than down south and they constantly said it was above the standard price. They would pay additional money every time once I filled in the paperwork. So don't give up. Keep up with your blood work too as you don't want your disease to rapidly advance and that can happen.
Good luck to you!
Katie
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I am a multiple treatment failure but have never been tested for any of the things like Q80K or IL28 or what ever I just figure based on my history of null responder to interferon and Sol/Oly relapse I have them all.
Really no point to test for them my treatment wouldn't change. I have only the option to treat with whatever is available and I need to treat so basically any of that testing for me would be a moot point.
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Hi Katie
Have you heard of an organization called Angel Flight?
The provide free transportation for patients from out of the way locations to airports near their doctors and also sometimes provide transport from the airport to the doctors office. Not an air ambulance patients must be reasonably ambulatory. Pilots are volunteers but have to meet certain requirements.
Check it out maybe it could help you.
http://www.angelflightwest.org/
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I will check it out Lynn. Thank you and a WOOHOO on your good lab work!
There is also Guardian Air here but it's more for emergencies and if you have insurance they still go after the cost which is incredibly expensive....about $15,000 one way trip, from what I hear. They have an annual enrollment fee which is minimal.
I have saved up miles so when I need to fly south I have that to help out it is just so darn inconvenient. I need to see a back surgeon for an evaluation as I am developing neuropathy in my feet and one leg and I just keep putting it off. At least I am still moving.
So what day do you go through Ketchikan?
Have fun!
Katie
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yeah no cost, free flights, volunteers. Angel Flight and Angel Flight West are part on the Air Charities Network. Pilots volunteering their services as a way to give back how fortunate they have been in their lives to be able to be pilots so kinda pay it forwards.
Are you up in the San Juans? I know I have seen flights from Lopez Island. Another one is Port Roberts it is in the U.S. but only road goes into Canada. Port Roberts is on a peninsula. Angel Flight goes up there also.
"Angel Flight West is a nonprofit, volunteer-driven organization that arranges free, non-emergency air travel for children and adults with serious medical conditions and other compelling needs. Our network of 1,400+ pilots throughout the 13 western states donate their aircraft, piloting skills, and all flying costs to help families in need, enabling them to receive vital treatment that might otherwise be inaccessible because of financial, medical, or geographic limitations."
Big fan of Angel Flight if you couldn't tell ;)
Not sure when I'll be in Ketchikan sailing this Wednesday from Vancouver
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Johnny and other non responders
Sorry as others posted it's in the back of all our minds.
My follow up appointment post Tx my doc said do you feel good now that you're cured, my reply was I can't allow myself to to think that way, yet. I could see he was a little taken back by my statement but I explained if my 12wk labs are not detected then I'll feel good, until then I'll just be in a holding pattern.
Johnny
Sorry if I messed something as I read through all the posts but you have C4 and you're only on 12wk treatment ?
I have my 12wk post labs on May 27. I've tried to block this out of my mine the last few months but now that it getting closer....
Again sorry.
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Greetings:
So sorry to hear about the harvoni failure. I am just getting started on my 12 week treatment using harvoni and ribavirin and need some guidance. No one ever mention the stuff you did regarding using a different tooth brush or new blade when shaving. I shave my head every other day. What else don't I know?
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Josmith good luck with your treatment. Drink a lot of water it helps in easing side effects. Deb
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@BobV, I'm sorry to add to your stress levels! I did think for a long time, before posting my bad news. I had major relapse symptoms after treatment, if that helps to ease your mind a bit. I really hope you achieve SVR! SVR is way more possible than relapse with this medication!!!! Again hoping for the best for you!
@josmith, Good luck with your treatment and for my input, listen to your body, it will tell you what it wants. Rest when you need to! and I have read to change tooth brushes, razors and nail clippers, in many places, so that is probably the way to go!
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Terih
You're not adding to my stress level, I do that on my own :) To be honest it's really not bothering me all that much but after the labs I'm sure my anxiety will go up.
Sorry with all you're dealing with.
Bob
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Josmith
Yes drink lots of fluid and REST as needed.
Good luck.
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@FutureThinker, Yes the learning curve seems to be a major thing with these new meds! The Docs know what the drug reps tell them, the drug reps know what the company tells them. My Doc actually looked shocked when he pulled up my report on his computer, I just looked at him and spoke the words for him! He looked relieved to not have to say the words! ;) And you are right RAV research is not an easy read! But I have a Doc now that explains very well, in words I can pronounce! Maybe consider the side effects of Riba with your Doc, before deciding on your treatment plan! If your Doc is open to fighting for Harvoni with you, that would be the way I would go, if possible!
@Bob V, Thank you for your kind words! And again, I'm wishing you my best!
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Hi TeriH -- You are right, it's the riba sides that I prefer to go the Harvoni route, as is the case with so many of us. I think I speak for many of us with this condition that we've been patiently praying and waiting for better treatments, and then they are here and no one wants to pay for them!!! VERY FRUSTRATING to say the least. It's stressful enough to be having to fight for this treatment, and then such a shock to hear that some have relapsed. I just feel so badly about these relapses, really takes the wind out of you. I am happy to read your good attitude about this, we are all praying that the next time will be the one for you and the others!
I guess for those of us who haven't yet started treatment (and want to!!), I just want to know if there's anything else that needs to be explored before starting either the Viekira or Harvoni. I am seriously considering paying for this out of pocket (the Harvoni), so that's another reason the relapses took me aback. I may end up waiting a bit longer, maybe next year, if my hepatologist agrees. We all just have to stay strong and I am so grateful for a site to vent/communicate like this!!
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I guess for those of us who haven't yet started treatment (and want to!!), I just want to know if there's anything else that needs to be explored before starting either the Viekira or Harvoni. I am seriously considering paying for this out of pocket (the Harvoni), so that's another reason the relapses took me aback. I may end up waiting a bit longer, maybe next year, if my hepatologist agrees. We all just have to stay strong and I am so grateful for a site to vent/communicate like this!!
Hi Future, You shouldn't have to wait that long to get more information on the treatment results. Many of us who started when Harvoni first was available are now approaching the post 12 week and post 24 week (in June & July for the 8 & 12 weekers respectively) so there will be some real life data out there and new reports available. If you plan on waiting you might want to get insurance or upgrading to help with the cost or contact Gilead to see if you are eligible for their assistance.
Talk to your doctor and see if this would be an option that is in your best interest.
Good luck and just know, 2015 is going to be a wonderful year for many people, including you!
Katie
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Thank you, Katie, I agree with you -- 2015 IS going to be a great year for a lot of folks, and I want to be one of them!! I'm just going to have to talk to my hepatologist at my next visit and go over the pros and cons again. I'm also wanting to see how the Viekira stats will pan out, which will be coming out soon, too -- who knows, maybe despite the riba that's required, it will be the path I need to take.
I was all geared up to fight the ins. appeal denial, I am SO READY to be over with this -- but if we are considering paying for this out of our own pockets, that puts a different light on it. I certainly understand nothing in medicine is "for sure", we are all different. However, we make too much for Gilead's assistance program, but I have also seen some people in our situation get assistance, so I have downloaded all the info from the support path site to familiarize myself with it.
I really want my life back. Lots of decisions to make. Thanks again for your support!
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Hi Katie
I was a 24 weeker started Nov 17th 2014. My 12 week post TX will be July 27th (10 weeks 6 days but who's counting) so even us long timers will be arriving at the 12 week post viral load test very soon
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I was all geared up to fight the ins. appeal denial, I am SO READY to be over with this -- but if we are considering paying for this out of our own pockets, that puts a different light on it. I certainly understand nothing in medicine is "for sure", we are all different. However, we make too much for Gilead's assistance program, but I have also seen some people in our situation get assistance, so I have downloaded all the info from the support path site to familiarize myself with it.
I really want my life back. Lots of decisions to make. Thanks again for your support!
I think I mentioned this before, but it really helps if your doctor writes the insurance company and stresses the importance of Harvoni and duration of treatment. Many were approved after they appealed the first denial. Since you have insurance, fight for the coverage you deserve. They are counting on you to back off, so don't do it. FIGHT!
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Hi Katie
I was a 24 weeker started Nov 17th 2014. My 12 week post TX will be July 27th (10 weeks 6 days but who's counting) so even us long timers will be arriving at the 12 week post viral load test very soon
Yes Lynn and I can't wait to see how it all works out. I just used the 12 week as an example for the time frame but the data will be really rolling in for the next several months and I personally am interested in the 24 week post results. That was kind of the time frame I put on the treatment for myself and that's when I will celebrate if I am still clear. I am telling people who have been close to me, for the first time, about the disease, my infection, the research and treatments and my undetected results, more to spread the word in case they have someone who could benefit, than anything else. It also helps explain my change in social activities and overall personality and solitary life style that was so different from 10 years ago. It is a relief to feel comfortable talking about it finally.
Yes, 2015 is going to be my best year in a long, long time!
Katie
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Indeed hoping 2015 is the year for us all!
I guess my 24 weeks post treatment test would be about October 20 and being an "old school" treater myself I will feel better having a 24 week post and probably a 1 year anniversary EOT before I will fully exhale.
But first things first doing a 4 week post on June 1 that should be very interesting and hopefully good news.
fingers crossed for us all
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Indeed hoping 2015 is the year for us all!
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Yes Lynn and Katie.
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Hi Katie, thanks for the fighting words!!!!! I think I'm going to have to gently assist my MD, not sure what exactly was put in that appeal, but you can be sure the next one, whenever that is, will have some very specific info in it. I've already talked to to the staff about the absolute need to put EVERYTHING in the notes and EMPHASIZE what I'm going thru. I think a fellow member, Roger, made a very big point about this somewhere on here. Thanks again.
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It's been a hard couple of weeks for me. I've had hep c for the last 15 years. I'm 37. I told people when I found out and got hit with the stigma and people telling other people, so I don't tell anybody anymore, except for my doctor
I was amazed and excited about Harvoni and these new treatments when I heard about it, then when I got my prescription I was so happy to start a new journey in my life. I used to fear the other treatments and my doctor said to hold off, since my numbers were low and normal. So this was my first try at treatment
My Gastro said that all of his patients had went undetectable, so I thought this was going to be a breeze. The treatment itself was very easy, I did not notice any side effects. The only medication I took throughout the treatment was methadone, I am on a small amount of methadone 10 mg per day
My doctor never asked me to do any blood work throughout the eight weeks until the seventh week. I came down with a cold week 7, so I am guessing that I may have really, I don't know because I don't have any blood works at the four-week
My vl was 500k before treat I came down with a cold week, so I am guessing that I may have really, I don't know because I don't have any blood works at the four-week ment and at 7 weeks it was 1.1 million, so it double during treatment.
This result confused my doctor, The prescribing companyand my insurance company off. There really is no Plan B right now, there is no data to support doing any other treatment
My doctor has prescribed me Viekra Pak, but after reading some of these support threads, I highly doubt insurance will pay. I am at the 12 week mark, so I will get a blood test this week, I hope my VL will go down, but I doubt it.
I do want to thank each of you for adding to this site. I literally have nowhere to go to discuss and learn about this disease. See a lot of new drugs in the pipeline, but I haven't found anywhere that is testing Harvoni failure
During my treatment I followed all of the recommended guidelines, I took my dose at night I didn't take chances with razors or anything just in case
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Reek34
Sorry about the jump in VL. You never know maybe this weeks lab will be UND. Good luck.
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Thanks Bob,
I just got word that my doc is on the first appeal with insurance, he's trying to get me Viekra pak.
When we got my results back at 7th week, he perscribed an additional 4 weeks.. but insurance refused to pay, since my VL doubled..
I hear there is another option coming later this year or early next year, Sofosbuvir/GS-5816. I hope they have data on this when it comes out.. It doesn't seem like they are too concerned with Harvoni failures, since the percentage is so small.
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I hear there is another option coming later this year or early next year, Sofosbuvir/GS-5816. I hope they have data on this when it comes out.. It doesn't seem like they are too concerned with Harvoni failures, since the percentage is so small.
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If needed this will be my plan.
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Even better is the triple therapy coming down the road.
SoF/GS-5816/GS-9857
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Charly8 -- Yes, that study by Gilead does look promising and the completion date is May 2016.
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I found this new data study.
Evidently, a retreat of Harvoni is 80% successful in people who failed the 8 week treatment. The data says that you have to retreat for 24 weeks
http://www.hepmag.com/articles/Harvoni_retreatment_2501_27162.shtml
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I did a little searching on the RAVs and it's not "easy reading", so you may be correct that it's primarily important for experienced patients. If anyone can shed some light on this, I'd appreciate it.
Here are the respective conclusions from a relevant study regarding RAVs;
• Pre-existing NS5A RAVs detected in 16% and 10% of HCV GT 1 subjects
with 1% and 10% deep sequencing cutoffs, respectively
• Prevalence of NS5A RAVs was similar between GT 1a and GT 1b
– GT 1b has more Y93H and less NS5A RAV diversity than GT 1a
• Slightly higher prevalence of NS5A RAVs in EU versus US
• High SVR12 rates achieved in HCV GT 1 infected subjects with NS5A,
NS5B NI, or NS3 PI RAVs at baseline treated with LDV/SOF regimens
• A lower SVR12 rate observed among treatment-experienced subjects who
had baseline NS5A RAVs with >100-fold resistance to LDV treated for 12
weeks with LDV/SOF
– Lower SVR12 rates not observed in treatment-naïve subjects or with longer 24
week LDV/SOF treatment
•
Pre-existing baseline NS5A RAVs have a poor predictive value for virologic
failure in subjects treated with LDV/SOF
Here is a link to the entire paper for those who really like to strain the brain and like looking at data tables.
https://www.informedhorizons.com/resistance2014/pdf/Presentations/DvorySobol%20website2%20HDS%20HCV%20HIV%20resistance%20work%20shop%20presentation%20Final%20Final%206.5.14.pdf
Lynn is essentially correct and the data is explicit that having certain sub sets of these mutations is not reliably predictive of treatment outcomes with LDV/SOF
Harvoni = LDV/SOF
Why Harvoni is not 100% effective is a topic I am sure the researchers are carefully looking into. All we can do is speculate. One area of speculation must be areas of the body that have slow metabolism that harbor virus particles for longer periods of time. For instance the recent episode of a cured Ebola victim that still had virus in the aqueous humor 10 weeks after being free of the virus in the blood http://www.sciencedaily.com/releases/2015/05/150507165402.htm
That is the problem with these little 'turds they can hide and come back to bite you!
Eric
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I really feel that if you are not absolutely in a hurry to get treatment, you should "never" be in the first group to take a new medication. Too little study, too much hoopla and no long term knowledge of hidden effects!
Also on the subject of 100 % cure there is nothing 100 % sure. As an example, just this weekend a woman jumped from a plane with her husband parachute. There is a missing part in the parachute and it doesn't open (husband being investigated..). She has 100% chances of dying! She survived!! I smell a divorce in the air. Why this story? It is a real one showing that 100% doesn't exist...
Let ourselves be happy with super high numbers of cured people. New approaches are coming out every 2 years or so. Most probably people will be laughing at Harvoni 10 years from today...
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Hi Mario
Being a skydiver kinda interested in that report. All parachutes used to jump from planes are required by the FAA to have a reserve parachute that has been inspected at 6 month intervals and bears a seal from theFAA licensed authorized rigger who performed that inspection and repack work.
Or as they said for my first solo jump "don't worry the person who packed your main wasn't very drunk that is why we have a reserve you can count on".
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I had my own little theory that I was glad to be on Harvoni during cold and flu season in an effort to coax as much HCV activity as possible so them buggers would get zapped. I tried real hard not to miss any work since I work in a "sick building" -lol! Probably just Pretzel Logic.
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Thanks for the kind words Bob V. I got the 8 week treatment, was given a test at the end, 7.5 weeks and my VL had doubled and my doc said it was a failure, and started trying to get me Viekra Pak. The prescribing company thought I had done something wrong and made me feel like I was the only one who it didn't work for. It's been a rough 4 weeks. I started exercising, running and drinking lots of water
Before treatment VL 500k
End of treatment test: (7.5 weeks) VL went to 1.2 mill
4 weeks post treatment UND
After reading these threads, I had to specifically ask my doc to give me the 12 week blood test, he and I were both amazed with the results, which are UND!
This has to be the best day for me in a long time!
I know it can still come back, but I'm so happy to have some good results after 15 years of dealing with this disease
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@reek34 that's wonderful news, congratulations! Thanks for posting this information. I've seen where several folks went UD after treatment ended. What a stressful time you have had, ugh! Glad it's over eh?
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Reek34. I agree that you've had the weirdest results available! I'm happy for you that it finally resolved. The laboratory must have made a terrible mistake somewhere because it is hard to believe this turnaround. Anyway, have another test done soon so as to relax fully from your misadventures and good luck with the rest of your disease free life!
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@Reek34
Excellent news, congrats.
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Reek34! That is some excellent news!!!! That is one awesome turnaround! I'm so happy for you! Whatever you're doing keep on and if it's some secret, can you share??!!! ;)
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Before treatment VL 500k
End of treatment test: (7.5 weeks) VL went to 1.2 mill
4 weeks post treatment UND
After reading these threads, I had to specifically ask my doc to give me the 12 week blood test, he and I were both amazed with the results, which are UND!
This has to be the best day for me in a long time!
I know it can still come back, but I'm so happy to have some good results after 15 years of dealing with this disease
Hi Reek! I am SO Delighted for you and what a shocker. I only say that because of your increase at EOT as I think that is a first. I was still detected at EOT but a strong responder, but understand some of what you went through as my doctor was very concerned by my detected results. He said I was the only one that had not cleared by EOT. Now we understand that may not be the case and I understand better why
SVR 12 is what we really need to focus on. Congratulations and on to the next waiting period and test. I have a post test coming up in a couple weeks (week 16).
I'm doing my Happy Dance for you Reek!!!
If you have the time, it would really be helpful for you to post your results on this thread. It may even encourage some who have relapsed to get another test done just to make sure as I believe there are a couple similar with your results.
http://forums.hepmag.com/index.php?topic=2665.new;topicseen#new
Go do something nice for yourself and know you are on the road for a permanent cure! Congrats again!
Katie
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Thanks everyone! When I got my EOT bloodwork back, all I heard was still detected, and high. I started working out, running and drinking alot of water and tried to forget about it and move on until another cure came along
at my 7.5 week blood test, my AST went from 73 down to normal range: 22
and my ALT went from 121 down to normal range: 29
but my Viral load went up. I am still new to the numbers and don't understand why the same test shows 1.7 million <15 UI/mL and right below it, says 6.25 log IU/mL?
Anyone understand that?
My 12 week is showing und and I hope it stays that way. Thanks for comments!
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Hi Reek,
<15 UI/mL is the sensitivity of the test, meaning it can count above 15 but can still detect below 15 in which case if it detected it would not state Undetected.
A logarithim is a short cut for really big numbers. If the question put to you is "How many numbers do we multiply to get 7.924.270 with a base of 10 (how many 10's)? You basically count how many 10 places and in the case of millions it is 6, (10 million or more would be 7) It is the reverse of squaring or cubing....(exponential) a number.
Example How many 2's (base of 2 instead of 10) do we need to get to 8?
2 X 2 X 2 = 8 so the answer is log(2) = 3
Base 10 is usually used in science or medical calculations and it just makes dealing with very large or very small numbers easier to deal with and that is what they deal with when looking at how a person is responding to treatment.
So using Log(10)
10 X 10 = 100 (or 10 squared) Log(10) = 2
10 X 10 X 10 (or 10 cubed) Log(10) = 3
Hope that helps.
Katie
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Thanks Katie! I just hear everyone talking about their VL.. so which is my VL at 7 weeks.. the one that says, 1185878 IU/ml or the one below it that says 6.25 IU/ml. I was always confused about this. Both were listed as detected, just trying to understand why mine went from 1.1 mill down to UND after treatment stopped. Could the 7 week test be inaccurate, since my AST and ALT went to normal?
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1,185,878 IU/ml = Log (10) 6.25 IU/ml. They are the same number. the 6 stands for million and the .25 stands for the 185,878. It is the reverse of an exponential.
I don't know why your VL jumped so high at 7 weeks after being UN, but maybe just let that go for now and accept your success. Maybe in time there will be some explanation for it. Keep doing all the right things and focus on your test at 24 weeks post treatment. If that comes back UN you have it licked. Remember, the test they are concerned with is 12 week post treatment and many doctors are only running that test. It has do do with how long the virus is viable and if it hasn't replicated at that point they feel you are cured. If your doctor hadn't done a 7 or 8 week test, you would now never even know it spiked up for a bit! And there is always the chance of an inaccurate test or a mix up at the lab.Don't stress yourself over it anymore as it doesn't do any good.
As for the liver enzyme tests, Mine were normal other than for 2 times, within 10 years (testing annually) and were normal right before treatment so they aren't always a way to determine HepC. It is more of a warning that something is wrong.
So relax and enjoy the good news!
Katie
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Thanks for the quick responses!
I will enjoy the news and look forward to more good news in 12 weeks ;D
Have a great weekend
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Started Harvoni 12/13/14 12 wk tx. 4 weeks ud, 8 weeks ud, 12 weeks ud, 12 weeks eot vl 3 million. Shocked and extremely dejected at results. No advice from my Dr as I am only patient who has relapsed. So disappointing. Don't know where to turn next.
John
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John
I am very sorry to hear your news. I didn't expect to see this and it was quite shocking. I can't even begin to imagine how you must be feeling
I hope you find a way to finally be rid of this monster.
Please keep us posted
Prayers & Blessings that you will beat this.
Deb
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John,
I am very sorry to hear this but I know the feeling. I relapsed last year on a 12 week Solvadi/Olysio regimen. Was SVR at 4 & 12 weeks; relapsed 2 months after.
I began a 24 week regimen of Harvoni on 2/23/15 and am into my 19th week with one more refill. Thus far I have been SVR.
Here's the encouragement not to give up. This disease will be eradicated. There are newer treatments on the horizon and plenty of research still taking place. Harvoni is the Number 1 treatment right now but there will be others. Every relapse provides more data to develop more effective and specifically targeted treatments.
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Went to see my hepatologist here in Chicago, who is one of the top liver guys in the country. I was told not to worry that a cure for me is in the "pipeline" less than a year out. He has never been concerned about VL counts. Ordered some blood work for HCV resistance and I'm waiting for the results. I could retreat with harvoni for 24 weeks along with ribarvirin but better to wait for new meds that will be more effective and shorter treatment periods, 4-8 weeks. Some really positive news for Harvoni relapse patients like me.
Fight the Good Fight !!
John
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That would be my move too John, good luck.
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Just finished 24 week course of Ribavarin and Harvoni yesterday, after failing on Olysio and Solvaldi last summer. Does anyone know how long it takes to shake off the side effects from Ribavarin particularly. Harvoni wasn't too bad, but the 2 together for 24 weeks was kind of brutal. Wondering how long it takes for the drugs to get leave my system?
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It takes a hell of a long time to get rid of sides. I've been on a 24 weeks treatment and finished 9 weeks ago. I still get bouts of high blood pressure and tinnitus. I was UND after 2 weeks but haven't had another test yet so I don't know if it worked. Now I watch my piss and it's still clear and my liver enzymes are now normal. Keep drinking water! It helps with the bouts of sides. Good luck with your end of treatment!
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thank you for your reply. Did you have sleep problems? Insomnia and tired all the time, and generally foggy in the head. Kind of a bummer to hear it takes a while to clear. Was hoping for miracles!
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I also relapsed last year on Sov Oly 12 week. I finished 24 weeks Harvoni and 15 weeks of Riba (it was added after starting) my primary side from the riba was anemia but 10 days after stopping my HGB was innormal range almost back to pre treatment level and I started feeling less draggy within days.
Everyone is different don't anticipate troubles where there may not be any to be found.
My 4 week post result was SVR4 I will do the test for SVR 12 on July 28
Best to all
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I relapsed too. I've been hanging my hat on false hopes for a cure for 20 years. In the end it was not to be.
I did a 24 week course and I cleared at week 12. Two weeks post treatment I was still undetectable. My ALT/AST/AFP had all returned to normal (or near normal) levels toward the end of treatment. By week 4 post treatment HCV came roaring back and my MELD score has shot-up from 12 to 17. Bilirubin is higher than ever and the itching is driving me up the wall!
Complications are mounting, and over the past year I have developed Hepatopulmonary Syndrome, so I'm dragging oxygen tanks around with me everywhere I go.
I suppose hope is never lost, but I've begun being realistic that this infection has already significantly shortened my life and barring a miracle, will likely take me in the near term.
Tim
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Hi Johnny,
Well I know how you feel! Got the word yesterday RELAPSE!!!!!!!!!!I am disappointed but I'm still kickin! Doctor says new drugs in pipeline go back in December. Will not dwell on it wont help! Good Luck all!! life is good! Karen
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Excited about the new meds that lie ahead, "everything is coming are way" .
Happy 4th of July to all, enjoy your weekend !!
Fight the Good Fight !
John
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I am so sorry to hear of the recent relapses....I know it is devastating to get that news but they have and are making great strides in understanding Hep C so please take good care of yourselves and keep informed, as something will come your way for a cure.
No matter what, your liver got a break for awhile so hopefully you will feel better in the near future. You are part of the forum family and we all share your pain and anxiety.
I am sending you all {{{HUGS}}}
Katie
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Mantrasonica
Like Katie sorry to hear about the relapses, sucks. I'm hoping the best for you guys in the future.
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Mantrasonica. I am really sorry to hear about your results! What an expensive bummer in dollars and health!
I also finished 24 weeks treatment and am now 9 weeks post with only a 2 weeks post UND. Needless to say I'm on pricks and needles! My enzymes are still barely normal and I piss clear. These are my only indications that things are progressing well.
My question: Did you have any indications before your 12 weeks test that things were not well? Even subjective stuff to alarm you? I'd really appreciate your feedback on this!
Finally, keep us aware of your next attempt with new medications that should be available in the next 12 months. Good luck to you!
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Mantrasonica. Were you on Harvoni for 24 weeks?
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I also failed harvoni and it took a real battle to get a new treatment with Viekira . At one point it was thought i was going to have to wait for the new meds in the pipeline . But my dr . kept hammering and i called Abvie for help etc. ect. in the end got approval . Good luck and keep trying .
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Mario555,
You asked about indications that The Hep C was back. Well I did
Think it was possible because of rash on my arms came up a few days before I weñt for my blood work. Good luck to all of you! Life is good! Karen
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Pappy
Good luck with that.
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thank you for your reply. Did you have sleep problems? Insomnia and tired all the time, and generally foggy in the head. Kind of a bummer to hear it takes a while to clear. Was hoping for miracles!
I had sleep problems just from hep-c but all treatments will make it worse . My doctor prescribed Lunesta I think that is what it is called ( the one in the commercial with a butterfly ) it helps but if you sleep walk you will not get it .
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Mantrasonica. I am really sorry to hear about your results! What an expensive bummer in dollars and health!
I also finished 24 weeks treatment and am now 9 weeks post with only a 2 weeks post UND. Needless to say I'm on pricks and needles! My enzymes are still barely normal and I piss clear. These are my only indications that things are progressing well.
My question: Did you have any indications before your 12 weeks test that things were not well? Even subjective stuff to alarm you? I'd really appreciate your feedback on this!
Finally, keep us aware of your next attempt with new medications that should be available in the next 12 months. Good luck to you!
Cant speak for others but when you first felt good after you started whatever meds you get you should feel at all times when cured . You will feel the hep-c bite if it fails , just sayin , call it instinct . :'(
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Thanks Pappy (feels weird to say that at my age..). I will not get a test result for my viral load before the end of August. This will be a full 16 weeks after EOT. I only have my 'instinct' as you mention and I think I am better but not by a noticeable amount. My liver enzymes were normal 9 weeks after EOT and I still 'piss clear'. Those are my only guides for now.
For the ones who relapsed, were your enzymes high when you learned of your relapse?
I notice I'm not too good with the wait period...
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Hi Mantrasonica
So sorry to hear of your relapse. I relapsed on Sov Oly 12 week treatment last year after being a null responder multiple times. I was so hopeful that treatment would work but was not to be.
Just wondering if you also treated with ribavirin?
I just finished 24 weeks of harvoni but my doctor later added ribavirin so I was on Harvoni and Riba for 15 of the 24 weeks. Per the AASLD Recommendations for Testing, Managing, and Treating Hepatitis C they are saying
"Patients with HCV genotype 1 or 4 with decompensated cirrhosis (moderate or severe hepatic impairment; Child Turcotte Pugh [CTP] class B or C) should be referred to a medical practitioner with expertise in that condition (ideally in a liver transplant center).
Rating: Class I, Level C
Recommended regimens for patients with decompensated cirrhosis (moderate or severe hepatic impairment; CTP class B or C) who may or may not be candidates for liver transplantation, including those with hepatocellular carcinoma. These regimens should be used only by highly experienced HCV practitioners.
Daily fixed-dose combination ledipasvir (90 mg)/sofosbuvir (400 mg) and RBV (initial dose of 600 mg, increased as tolerated) for 12 weeks is recommended for patients with decompensated cirrhosis.
Rating: Class IIb, Level C
For patients with decompensated cirrhosis and anemia or RBV intolerance, daily fixed-dose combination ledipasvir (90 mg)/sofosbuvir (400 mg) for 24 weeks is recommended.
Rating: Class IIb, Level C
For patients with decompensated cirrhosis in whom prior sofosbuvir-based treatment has failed, daily fixed-dose combination ledipasvir (90 mg)/sofosbuvir (400 mg) and RBV (initial dose of 600 mg, increased as tolerated) for 24 weeks is an alternative regimen.
Rating: Class IIb, Level C"
Personally when I relapsed last year I felt no different before during or after treatment up until my relapse my only clue was when I got my liver function test back before the 12 week post viral load test and my liver enzymes were above normal again.
As far as Pappy's comment about feeling hep c "bite" I had no such occurrence I had no instinct I had no clue about my relapse. Really the only hep c symptom I have is liver cirrhosis and symptoms to liver cirrhosis and those are not going away any time soon.
I was still not detected at 4 weeks post my 12 week post is coming up on July 27th three weeks so we will see how it goes for me soon.
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Lynn K my sister in arms! You have a nice touch with words! Thanks for the hint. Mantrasonica, although what you are going through is the shits, at least you can count on a number of new medicine coming up very soon.
If I 'my ever in this situation again, I would not choose a Sofosbuvir based treatment (except for a 8 weeks failure who goes for 24 weeks). Good luck with your future retreatment.
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Hi Mario!
Just for us fans of numbers my EOT 12 weeks Sov/Oly last year liver functions result 6/11/14
ALT (GPT) <33 U/L 29
AST(GOT) 0 - 50 U/L 25
My 12 week post liver functions I received just before I got my viral load relapsed results
9/3/14
ALT (GPT) <33 U/L 56
AST(GOT) 0 - 50 U/L 45
When I saw this result it definitely got my attention that there could be a problem which was confirmed a few days later when I received my viral load test result.
9/3/14
HCV RNA RT-PCR, QT IU/mL 2422260
HCV LOG 10 log10 IU/mL 6.384
Hope to see better results in 3 weeks and I will be looking for yours most def!
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Thanks Pappy (feels weird to say that at my age..). I will not get a test result for my viral load before the end of August. This will be a full 16 weeks after EOT. I only have my 'instinct' as you mention and I think I am better but not by a noticeable amount. My liver enzymes were normal 9 weeks after EOT and I still 'piss clear'. Those are my only guides for now.
For the ones who relapsed, were your enzymes high when you learned of your relapse?
I notice I'm not too good with the wait period...
Your vl and other stated enzymes including your age are very similar to mine have faith sooner or later it gonna get beat .
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Hi Pappy
Do you have liver damage like Mario and I do? We both have cirrhosis
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Just my 2 cents...I had insomnia for over 10 years and was lucky to sleep 3 nights a week, more than 3 or 4 hours. I took a prescribed sleep aid only when I had an important day coming up as none of that stuff is good for a compromised liver. I was a walking zombie on many days. With my 2nd Harvoni pill I slept, and I started dreaming again and felt rested and energized. Many of my friends said my insomnia was normal as we aged, but I didn't believe them, and I was right. It definitely was the HepC. I am 17 weeks post treatment (which was successful) and I am still sleeping like a baby and am so grateful. I am still having some weakness and fatigue which happened after I finished treatment. This seems to happen to quite a few of us, but eventually everyone ahead of me is reporting regaining their energy and endurance. Our bodies have undergone so much so we need to be patient and allow healing.
Waiting is the most difficult part. I am one of those who was detected at EOT and the wait for my next test was horrible. I kept feeling better and then found articles where some were clearing after time passed so I was hopeful. I cleared at 8 weeks and maintained UNDETECTED status at week 16. I feel so blessed.
Good luck to all of you,
Katie
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I was undetetected from 4 weeks on Harvoni until my final labs at 24 weeks, 12 weeks post treatment. I was tx naïve and had Harvoni for 12 weeks, 84 days. We will conquer this beast soon. I was sent for resistance testing after relapsing, not positive it has something to do with why I failed. I'm sharing the results for everyone.
LEDIPASVIR RESISTANCE
PREDICTED
HCV NS5a SUBTYPE
1a
OMBITASVIR RESISTANCE
PREDICTED
Mutations Detected: M28A, Q30R
DACLATASVIR RESISTANCE
PREDICTED
I'm thinking maybe this is why I did not obtain SVR on Harvoni. I have not spoken with the doctors yet as I just received these results.
Fight the Good Fight !!
John
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Too bad they didn't test for resistance BEFORE giving you 12 weeks. 24 weeks would most probably have done the job! Thank you for giving us a look at those tests, I didn't know about them!
Good luck to you!
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Hi Pappy
Do you have liver damage like Mario and I do? We both have cirrhosis
Yes compensated called child pugh score for bilirubin of 2.4 on last test
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Child Pugh A B or C do you know your MELD?
I am Child A,MELD 8 diagnosed with cirrhosis in Jan 2008. I was F3 on previous biopsy in 2003. My bilirubin is still in normal range 0.8 but my INR is 1.1 so that raises my MELD.
I have some portal hypertension evidenced by esophageal varicies that required banding in 2012 which required 4 sessions of banding to get rid of all the varicies and now have annual upper endoscopies to check to make sure they haven't returned.
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Sorry not much into stats but glad i'm not getting any other problems yet :-X . As for some people testing for medicine resistance after a failed attempt to cure you are always going to be resistant . I went from a 1.2 million VL before failing to 7.5 million VL after failing harvoni . The good news is many have success , bad is try and fail and often you are worse . I wish everyone good luck .
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Sorry not much into stats but glad i'm not getting any other problems yet :-X . As for some people testing for medicine resistance after a failed attempt to cure you are always going to be resistant . I went from a 1.2 million VL before failing to 7.5 million VL after failing harvoni . The good news is many have success , bad is try and fail and often you are worse . I wish everyone good luck .
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pappy
Pre tx this was one thing I did think about since I was HepC stable. If I failed tx would I be worse off.....
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People are different and results differ . The medications out now are mostly successful and with few side effects , better to go get the best all out answer then trust the lord .
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I was undetetected from 4 weeks on Harvoni until my final labs at 24 weeks, 12 weeks post treatment. I was tx naïve and had Harvoni for 12 weeks, 84 days. We will conquer this beast soon. I was sent for resistance testing after relapsing, not positive it has something to do with why I failed. I'm sharing the results for everyone.
LEDIPASVIR RESISTANCE
PREDICTED
HCV NS5a SUBTYPE
1a
OMBITASVIR RESISTANCE
PREDICTED
Mutations Detected: M28A, Q30R
DACLATASVIR RESISTANCE
PREDICTED
I'm thinking maybe this is why I did not obtain SVR on Harvoni. I have not spoken with the doctors yet as I just received these results.
Fight the Good Fight !!
John
If I'm understanding this correctly, they can pretty much predict, with those tests, if a person is likely to clear or not clear the virus using the Harvoni Tx. How much time, money & mental stress could be avoided if they used those tests prior to treating?
I'm Sorry to hear about this John (HHburme)
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Those drugs are found in Viekira Pak not harvoni , his doctor is trying to avoid Viekira pak . The insurance company will prefer the cheaper option .
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Harvoni is a combo medicine consisting of Sovaldi and Ledipasvir.
Perhaps the resistance was a result of treatment curious if it existed prior. I do know those tests are normally not done except in the setting of a clinical trial
Best to all
Lynn