Author Topic: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin (Read 92102 times)

rainbowray · « **on:** July 02, 2014, 06:19:50 pm »

Hello,
My name is Ray, seems there are knowledgeable people here so I am posting for some support. I have been with Hepc for over forty years, and the symptoms are finally getting to me. Perhiphial Neuropathy, fatigue, some liver pain. 3 fibrosis bridging. I was always reluctant for Medical treatment, and took every recommended herb for liver and hepc thru the years. The virus is finally doing its thing. Now I am confident to try Solvadi/ribavirin even though I would rather have the Olysio/solvaldi.
Maybe some people with experience can comment when I start treatment starting Monday July 7. got the ok today, with the assistance I will pay $60.00 for 24 weeks treatment. I have BlueShield california coverage. I am Gen 1B 2,700.000 viral count. I will post status as I go. My Dr. says I do not need to take any tests until 4 weeks out.
Well, thanks for reading.

jberlin · « **Reply #1 on:** July 02, 2014, 06:25:26 pm »

Good luck Ray! The drugs are amazing now, so maybe you were smart to wait... Either way you are starting to be make yourself better on Monday, and don't even have to mess with interferon shots! Cause to cheer! Let us know your progress, and most certainly the results of your 4 week labs.

I contracted Hep C in December, 1976, so you got me beat.... Soon you will join me and not have the virus any longer!

Best wishes,
jack

optimystic · « **Reply #2 on:** July 02, 2014, 10:30:14 pm »

Hi Ray. here are some trials that have completed and have posted results. go to www.clinicaltrials.gov , put in hepatitis c then scroll to rank 97, 293. and 398. click on study results. give it some time and look closely at what you are looking at. you will get it.

rainbowray · « **Reply #3 on:** July 03, 2014, 01:14:59 am »

Thanks for the replies, I am glad no interferon is in the mix. I have refused it several times and believe the Solvaldi is powerful by itself but being 1b genotype I feel I do need the combo, so ribavirin is only what I have available. It is ok with me, and I am just going to be watching the symptoms. I read a lot of the trials, and my Dr. offered a trial with solvaldi in November that he is doing, but we felt not to wait. I did about 3 weeks of Interferon about 35 years ago and got so depressed, then the Dr. said it must be something else causing the symptoms. (go figure). That was enough to convince my Dr. now to not push for triple combo therapy. Thank God. Have to do 24 weeks though. I am still working , so hope the days go by quick.

DesertGuy · « **Reply #4 on:** July 03, 2014, 07:35:46 am »

Hey-don't worry, I'm a lot like you, waited until now for treatment. I am in my third day today--and have been waiting for a side effect--nothing yet.

canythingbutaverage · « **Reply #5 on:** July 03, 2014, 10:23:02 am »

Be careful with symptoms, they'll creep up when you least expect it. Sovaldi is an amazing drug though, and even for those of us with some serious liver damage... you can do your part to minimize symptoms with proper diet(pass on the salt), exercise and a good night's rest.

Your doctor said that Interferon was not the culprit for depression?

Because chemical imbalances are not the only thing at work with depression. That treatment was HORRID in it's early phases. The psychological ramifications of this masochistic healing idea are not for the faint at heart. "To be healed, i must inflict this pain upon myself, To be cured i must endure" is a pretty shitty reality. Also Interferon has come MIIIIILES since even fifteen years ago. Once a week shots aren't exactly a cakewalk, but they're a lot easier than three or more.

Regarding your progress updates... if you're comfortable with sharing progress in regards to your AST, ALP, ALT, and Bilirubin, that would be awesome. Since those markers will better reflect the condition of your liver, and how you're doing.

As an aside, Peripheral neuropathy looks nuts! And I'm seriously glad you mentioned it, because I'm pretty sure i have this. Wooohoo... now i have something new to talk to the doc about. I always wondered why i lose sensation in random body parts and occasionally can't see anything.

rainbowray · « **Reply #6 on:** July 03, 2014, 01:28:10 pm »

canythingbutaverage
Thanks for the reply,
I'm going to status as I go, but no test results will be available for 4weeks.
My alt and ast are about 50% above normal, which is about what I always had.
Yes, back in the day the Doctors just followed protocol, and did not have much info.
When a Doctor doesn't listen, I'm out the door.
My Bilirubin is in range now, so I feel I am doing the correct things, Dandelion tea,
excercise, good diet. Thanks. My hemoglobin, palettes, RBC all in range now.
The Peripheral neuropathy is a drag, I had tests done and the only thing suspect was a high Reumatoid factor in my blood. Shows autoimmune issue, attacking the nerves per my neurologist. I looked up the issue, and yep it is a symptom of hepc
activity. My Liver Doc agrees. That is why I sought treatment.
I will post any blood work update as I get them, hope others doing the same treatment can post too.
Thanks for reading.

Mike · « **Reply #7 on:** July 03, 2014, 04:11:08 pm »

Best wishes, Rainbowray,

We're all pulling for you! This should be a breeze -0 since you're not taken the INTF, which, as you know can be a real bear!

Mike

patsy · « **Reply #8 on:** July 04, 2014, 06:11:23 pm »

I didn't know some people were leaving out the interferon. I've been taking the Solvaldi/Rib/Pegasus. I'm finding out lots of new info since reading a few threads here. I wish I had found it sooner. I only have about 3 weeks left. My side effects didn't start until several weeks in. Now they are really bugging me. I'm tired, can deal with that. Itchy face. Sore tongue and lip. Looking older. The worst thing is the mental stuff. I am so, everything... anxious, sensitive, irritable, paranoid, depressed. I am aware that it is the meds and won't make any important decision till I am back to my old self. And I got stuck with a doctor that hasn't been paying attention to anything about my case. I actually walked out of her office the first followup visit cuz despite the fact that she had been "electronically" signing off on all my labs, she wasn't even aware that I was on the treatment. I haven't been back. Somebody checks my blood work now (probably the doctor's nurse or PA) and they even cut my dosages due to low white cell count. Who needs a doctor? The pharmacy is good and has a 24-hr. hotline and are right on top of the changing dosages and refills as needed.

Oh, by the way, how do you guys know how you got Hep C and when you got it. It's a total mystery to me.

lporterrn · « **Reply #9 on:** July 04, 2014, 07:08:15 pm »

Hi Patsy,
Treatment does start to get tiresome. I hope the next 3 weeks fly by, and you start to regain mental strength quickly. So sorry your doc has not been a source of support, but it sounds like you managed anyway.

Some of us have clear risk factors, making it easier to identify how we either got or likely got hep C. In my case, I got hepatitis symptoms 6 to 8 weeks following a blood transfusion. Many people have no idea of who or when they got it, esp. since the symptoms are so vague.

rainbowray · « **Reply #10 on:** July 04, 2014, 07:53:27 pm »

Thanks for the reply Patsy,
I actually remember over 40 years ago, having dark urine, and very weak for a few days. Went to a Naturlpath who checked my blood, and said it was Non A Non B hepatitis and nothing for treatment. He said it will take about 20 years before and issues arise. I was doing high risk activities, so I think I knew exactly how how I got it. But it is mute now.
I am now day 2 of treatment and and feel the same, and I really would have refused treatment if the Dr. insisted interferon and gone elsewhere. That is where my mindset is so I got my desire out of it. Your Dr. seems unprofessional and I would have a little hard time with that, but getting healed is the goal. You are this far now, so just keep an eye on the blood work. I always ask for copies of each time I get blood work and check all the flags on the internet.

patsy · « **Reply #11 on:** July 04, 2014, 08:29:26 pm »

The lab sends me copies each time.

I believe I had had it for quite some time (once I did IV drugs about 38 years ago). Either that or from one of my two tattoos. I got one of them about 26 years ago and the other about 5 years ago. The recent one though was done by a real pro that is a friend of my daughter. Then there is the possibility of hospital stays. I broke each wrist at different times and surgery needed to be done on both. I was always very healthy and had only those two surgeries outside of for an ovarian cyst 25 or so years ago. But I've never had a blood transfusion. I finally stopped trying to figure it out. Impossible.

Is it generally thought that it's the interferon that causes the mental/emotional issues?

Mike · « **Reply #12 on:** July 05, 2014, 08:08:06 am »

Interferon is known to cause depression and Ribivrin can cause anxiety/irritability, memory loss and sleep disturbances.

Mike

rainbowray · « **Reply #13 on:** July 05, 2014, 08:48:26 am »

Hi Patsy and Mike,
I'm not an authority on these drugs, but it seems the Solvadi makes the treatment with either Interferon and/or Ribavirin less risky and less problems are reported so far.
The Interferon does have more risky issues I think. The Ribavirin can cause anemia in the blood, the Interferon I think goes into the marrow to cause anemia so needs to be monitored closely. That is why I wanted Olysio. Either one is not without risk. People with the same genotype have different reactions. But if the hepc is doing some damage you have to do something. I hope the memory loss from Ribavirin is not permanent if any happens. All I know is I took Inteferon a long time ago for a few weeks and I did not want to touch it again, I had some nasty reactions.

Mike · « **Reply #14 on:** July 05, 2014, 12:07:45 pm »

The reason folks tolerate the SOL+INTF+RIBV cocktail better, is that the course of therapy is much shorter then it was in days of old.

I did 48 weeks of RIBV+INTF and just completed 12 weeks of SOL+INTF+RIBV.

The 12 week tx was much more manageable because I didn't have to endure an additional 36 weeks of it. The side effects, however, were about the same both times (i.e., fatigue, flu-like symptoms and so on).

Mike

patsy · « **Reply #15 on:** July 05, 2014, 02:00:40 pm »

Mike,
Have you found out whether you are cured? Yes, 48 weeks would be hard! Sometimes I wonder if I was kind of railroaded into this though. I'm pretty sure I wasn't feeling any symptoms from the Hep C to begin with. The doctors and the pharmacy were soooo persistent. I finally caved. I used to take a lot of Tylenol w/codeine and that could be where the liver damage came from. It could be just my "paranoid/anxious" side effect talking here but I'm almost done now so I might as well continue and see what happens. Only 2-1/2 more weeks if I've calculated correctly. I'm kind of old (65), but when the gastroenterologist started talking possible liver transplant down the road (haha, not much road left but my primary dr said you're way to young to ignore this) and I got the costs covered, I decided to try it.

Patsy

Mike · « **Reply #16 on:** July 05, 2014, 02:17:19 pm »

Hi Patsy,

I think you made the right decision to move ahead with treatment. Pain medication (codeine, Oxycontin, Demerol, Morphine, et. el.) really doesn't damage the liver and you would have to be eating Tylenol by the handful for this to occur (my guess would be the Hep-C did it).

In any event, you're almost done! You made it! And the chances of full clearance is at hand!

As for me, I have my EOT 12 week blood work next week. I should have the results around the 14th or so. I'm a little nervous, as would be expected. I'll post the results like this: "Cured" or "Relapsed." Anyone following my journey will know exactly what each of these words mean.

Best wishes, Mike

patsy · « **Reply #17 on:** July 05, 2014, 03:06:26 pm »

Well, I was abusing it (the Tylenol #4s), yes, almost by the handful for years. No sense trying to hide it. Got me in a bunch of trouble. But I do know it didn't give me Hep C. Haha! That came from somewhere else.

Geez, good luck Mike. I will do my "Help Thanks Wow" prayer for you. You deserve "Cured." I don't mean to be a downer but I heard you really don't know for sure until 3 months after you stop the treatment. I hope I am wrong about that but Sovaldi send me an email saying various things and that was one of them.

Mike · « **Reply #18 on:** July 05, 2014, 03:37:52 pm »

Yes. It's 12 week after treatment ends.

While in treatment, I was undetectable at week 4 and 12. I was probably undetectable at week 2, however, as the lab accidentally completed a viral load at week one and I went from 9,000,000 per ml to just 103 per ml after 7 days of treatment!

I completed a 12 week course of SOL+INTF+RIBV on April 17th, 2014. The 12 week end of treatment (EOT) threshold arrives next week! My hope is sustained virological response (SVR) after 12 weeks of being off treatment = SVR12 = cured!

Lastly, abusing Tylenol can, in fact cause liver damage. However, having a concomitant Hep-C infection can accelerate the damage many fold and cause it to progress even after you stop the drug abuse. This makes your decision to move forward with Hep-C treatment even more prudent.

Best wishes, Mike

DesertGuy · « **Reply #19 on:** July 05, 2014, 06:53:02 pm »

I too feel like I was railroaded into this treatment. Have learned MUCH more info from this forum --than my Dr. told me. Hey--not bitching, I'm not taking interferon.
And the Sovaldi is basically free, but I will turn 60 during the treatment and now hopefully I can look past 70.

lporterrn · « **Reply #20 on:** July 05, 2014, 07:31:47 pm »

I love the honesty and hope on this forum. I believe the truth opens the door to solutions. Thank you everyone for sharing. Mike - I am holding high hopes for your EOT-12 results.

patsy · « **Reply #21 on:** July 05, 2014, 10:00:57 pm »

desertguy,
I suspect that once the news of Sovaldi got out, medical professionals were asked to look in earnest all across the board for patients with HCV. Don't get me wrong, I am glad there is a drug out there showing such great results but I'm not naive to the "marketing" that goes on in the medical/pharmaceutical community especially now with costs so under the microscope. People are looking more at home treatments and holistic approaches to many illnesses. I got mine free too but someone is paying for it and man is it expensive! Well the triple drug therapy certainly is. I don't know the exact breakdown but Pegasus is unbelievable. Every once in a while some guilt creeps in causing me to think someone else might need it more than I do and they aren't receiving the treatment.

How long is the med regimen without interferon, desertguy? And I'm curious as to how many side-effect are eliminated without the shots. A lot I hope. I am also thinking I may get more years after this. I'm 65.

Patsy

Mike · « **Reply #22 on:** July 05, 2014, 11:59:16 pm »

Folks, don't get caught up with any marketing conspiracies theories. If you notice, Sovaldi is the main ingredient in every treatment option across all genotypes. There is a reason for this, which of course, is that it works very well in just about every population.

I'm getting ready to get my 12 week end of treatment results (i.e., 12 week post-treatment blood work). If I don't get a SVR12, there are no other treatment options available for me. I've discussed this with my GI and have reviewed all current research on this matter.

Stated differently, if you relapse with a Sovaldi-based treatment (not cured at the 12 week post treatment mark), and you are a genotype 1a there are no current treatment protocols that follow - other then a clinical trial.

I hate to point this out, put it is simply a fact.

It's not like your doctor is going to say: "Well that Sovaldi mix didn't work - we'll start you on a course of (blank) next week. It'll work better."

(To confirm this, ask your GI: "What happens if this treatment doesn't work? What's the next step?"

Sovaldi is the game changer - that's the only reason insurance companies are paying for it.

Best wishes, Mike

DesertGuy · « **Reply #23 on:** July 06, 2014, 07:43:46 am »

I'm to go 24 weeks--day 6 today. I went in to see my gastro guy for other problems--didn't get fixed--but came out with this treatment. doctor actually told me of the costs. This was the first time in my life a doctor quoted a price--and also first time pharmacies contacted me. VERY STRANGE. I see kickbacks to someone here. All that aside--I hope this works .

patsy · « **Reply #24 on:** July 06, 2014, 09:52:55 am »

Yeah, Mike, I almost didn't post that thing up there about marketing, looking for patients, etc. because I was afraid it sounded a little bit "conspiacyish." Oh, well, we all have these thoughts sometimes.

I asked the pharmacy for the cost and at first they didn't tell me because the person on the phone had to get authorization first. But, to my surprise, someone called back and told me. The pharmacy has been great though. They are the ones that did all the legwork to get me in touch with the foundation that is paying my co-pays. There has been a LOT of legwork for me and I have been in contact with some people who aren't doing their jobs very well (my doctor and the psychiatric clinic where I went to be cleared for the treatment) but also some who are going above and beyond what anyone would expect (the workers at the pharmacy are great and so is the woman at the lab that draws my blood every week). So, it's definitely been an experience/adventure. I only hope it's sucessful. But if it isn't, I'm no worse than before.

By the way, has anyone experienced extreme bruising as either a side-effect of the meds or maybe of the Hep C itself?

Mike · « **Reply #25 on:** July 06, 2014, 10:39:28 am »

Sovaldi is a $1000 a pill. 24 weeks of treatment is abut $168,000.00. It's expensive.

I would note that Gilead is covering the cost of this for 1000's of patients and there are non-profits helping with copays.

The problem is that many insurance companies are balking at covering this due to the expense, and are using protocols to choose who gets treated (i.e., those with advanced liver disease and so on). Some get treatment - some don't.

The other issue is with research and development: If the Pharmaceutical Company, which is different from the pharmacy, can't recoup the R&D costs, they will not invest in developing drugs like Sovaldi; period.

Gilead paid 11 billion to bring Sovaldi to market, and has recouped about 3 billion. Of that, 45% went to pay federal, state and local taxes (you know, the government's cut).

So I ask: Who is getting the kickback? If Sovaldi was tax exempt - you could cut the cost in half.

I'm not sticking up for Big Pharm. But I do understand 'market forces' - which include expensive regulations, taxes and so forth - all of which are cost drivers and help set the price of Sovaldi.

Best wishes, Mike

lporterrn · « **Reply #26 on:** July 06, 2014, 04:25:42 pm »

Patsy - not sure what you mean by "extreme" bruising, but bruising occurs with more advanced hep C and during treatment, esp with peginterferon. One thing to check, some supplements and drugs interfere with clotting, so these could be causing or adding to the bruising.

patsy · « **Reply #27 on:** July 06, 2014, 06:05:38 pm »

Thanks lporterrn.

For a few years now any little bump to my arms cause a very dark mark. Usually I don't even remember bumping it. It isn't painful but looks horrid. Does seem worse after starting the meds though. I know a lot of older people get this condition (I'm not THAT old, haha) but your reply makes me think it is the Hep C and I will watch for any improvement if I end up being one of the cured. And, yes, I am taking the Pegasus as part of my treatment so the combination of ALL that is probably what's causing it. I would sure love to see that problem diminish.

Patsy

rainbowray · « **Reply #28 on:** July 06, 2014, 11:37:30 pm »

Well, lots of replies and I thank all.

Patsy,
I am sure your Doctor is up on your labs, but I know a low Platelet count will cause brusing, and the liver is responsible for this function. If your platelets are in range then it is not the issue.
I am on day 4 of Solvadi/Ribavirn and have just a little nausea so far. I have dreams that the virus' in me are hiding, and screaming that their time is up.

Mamalof3 · « **Reply #29 on:** July 06, 2014, 11:59:16 pm »

Hi everyone. I started the Olysio/Solvaldi treatment June 4th. This is my first treatment ever for my Hep C. The cost is astronomical. Thank God for patient assistance programs. The $140,000.00 is being taken care of. I sure hope this works. It's so difficult mentally. Worrying all the time. Few side effects which I can live with for 12 weeks if the end result is a cure. After 2 weeks viral load went from 1,300,000 to 40. Although there are many other contributing factors the Dr said this is a good sign. Will have more info after July 10th.

jberlin · « **Reply #30 on:** July 07, 2014, 12:27:19 am »

1,300,000 to 40 in 2 weeks, yeah I would agree that is a good sign. It is actually unbelievable and the drugs are working as planned. You will certainly be UD at 4 weeks, so keep going for the rest of the treatment and get cured! Let us know about your future labs. Good luck, jack

rainbowray · « **Reply #31 on:** July 08, 2014, 01:18:39 pm »

Well,
I'm on my 5Th day, and only a little shaky at bed time, but sleeping pretty good anyway. I am eating good and went to the gym today. I can feel a little stronger as I did my cardio and swimming, and my liver inflammation seems to already gone down and the ache is hardly present. I am feeling optimistic about this, but must admit I am obsessed with monitoring my progress. Don't know if that is a good attribute or not. I am inspired by all the good reports on this forum that I have read.
Thanks

rainbowray · « **Reply #32 on:** August 04, 2014, 04:57:43 pm »

Great News Update on 4 WEEK Lab for Viral Load

HCV RNA, PCR Quant <15
HCV RNA, PCR, Quant <1.8
Note HCV RNA NOT DETECTED

What a great day after being diagnosed over 43 years ago.

lporterrn · « **Reply #33 on:** August 05, 2014, 12:22:30 am »

Fantastic news Rainbowray!!!!!!!!!!!

Tess1971 · « **Reply #34 on:** August 10, 2014, 07:39:39 pm »

I am going to be starting treatment with Sov/Rib for 12 weeks in a few weeks. I am still having some doubts but feel it is time. I have had hcv since 1971 when I was sick with hepB and nonAnonB at same time. HepB cleared itself, but, hepc is chronic. Have had bloodwork in normal range for decades, but, the fatigue and some other manifestations are now becoming much more often, always tired. I am 63 and retired now and still fighting fatigue. My Dr thinks I should treat now while I am still healthy enough since it is inter free and 12 weeks. My insurance will pay for it. I just have a small co-pay. I have not found anyone who has completed it long enough to see how well it works long term.

virgha828 · « **Reply #35 on:** August 10, 2014, 09:38:48 pm »

Hi Tess,

Welcome! This is a great time to treat. Even though Ribavirin is still in the picture the interferon is not. I started my second week of the S/R combo Thursday. Most of my sides are focus and restlessness related. I contracted hep c in 84 and have also had normal labs since. Just some fatigue but nothing major related to the hepc thankfully.

Unfortunately i watched my brother who also had this go through two liver transplants just to have the virus attack each one. He passed in 96.

I an treating so that i can get rid of this disease once and for all. I want to be able to look to the future without this virus blocking my view.

I am very hopful that i will clear the virus and be cured and you should as well. We all deserve this cure. There are so many people on this forum with lots of great information to help you get to your goal. I wish you much luck in your treatment. You are not alone!

Tess1971 · « **Reply #36 on:** August 10, 2014, 11:08:01 pm »

Thanks for the support. There are no support groups here. Only ones are couple of hundred miles away. I retired sooner than planned due to the fatigue. Fortunately I was able to. I am supposed to start around first of Sept. I was told by nurse at dr office that they will not check viral load until sometime after treatment has ended. They already checked it and a couple of pages of other bloodwork also to make sure I am healthy enough. My concern is the ribavirin and how to best head off any problems if possible. And if my age will be make me less resilient. ha.
I do have a very high viral load. Type 2b and treatment naive in my favor though. I have done so many herb protocols over the years to feel better and keep going, but, have this year stopped them all. I do have some anxiety about treatment and that is why I have joined this forum.

Mamalof3 · « **Reply #37 on:** August 10, 2014, 11:26:56 pm »

Hi again everyone. Well I have only 16 days left of the Olysio/Solvaldi treatment. Started with a viral load of 1,300,000. Was down to 40 after 2 weeks. Virus was undectable at 4 weeks. Still have a lot of fatigue but its a small price to pay if this us the cure for me. Thanks.

lporterrn · « **Reply #38 on:** August 11, 2014, 10:50:37 am »

Mamalof3 - You are almost at the finish line. Fantastic!

HepC53 · « **Reply #39 on:** August 11, 2014, 12:10:10 pm »

I just got a call from the Hep nurse regarding my labs last Thursday, they don't work Friday. She said my AST went from 54 to 19 and my ALT went from 99 to 20. This is from 2 weeks of treatment SOL/RIB. I recall she gave me a number which I believe was my initial viral load of 38 million so I plan on asking what that is but does anyone have any suggestions of what other questions should I ask when the Nurse Practitioner calls? So I guess I all this feeling terrible is paying off.
By the way IAM getting my hair cut really short. My husband loves that long so does my daughter but it's getting really nasty finding all this hair all over falling out like crazy. My oldest child wants me to shave it to get a tattoo so I can look all "Bad A$$". But he's 25 and I'm not. LOL! Lastly I decided that I'm going to stop worrying about the social stigma I think it's more important to let people learn what's going on with you and hopefully become more educated.

HepC53 · « **Reply #40 on:** August 11, 2014, 12:24:59 pm »

Ok, this has been a Twighlight Zone forum for me. My name is also Patsy aka "HepC53" and I am reading through this past forum and asking myself when did I write this stuff in my that out of it? LOL. I'm reading the forum through my phone so I don't always see the full screen. Okay it's such an uncommon name, Patsy, but I'm pretty convinced that I didn't write that stuff so... and I'm 53 not 60. Just a little humor in our day. Cheers to the Cures!

rainbowray · « **Reply #41 on:** August 11, 2014, 12:55:57 pm »

Hi Tess,
This treatment has a good response rate for Genotype 2, so it is worth the side effects you may have. Fatigue is one of them, but for me it is only at the end of the day. Drink plenty of water all the way through.

Tess1971 · « **Reply #42 on:** August 11, 2014, 01:38:56 pm »

I have not seen anything regarding hair loss with sovaldi and riba, only with interferon. Are any of you saying that sov/riba alone causes your hair to fall out?

rainbowray · « **Reply #43 on:** August 11, 2014, 04:20:14 pm »

I don't know about the hair with sol/rib, I have been on for 6 weeks with no hair loss.
I think a few have, but it seems to not be common. The ones that have, the hair grows back after treatment. Hope that helps.

Tess1971 · « **Reply #44 on:** August 11, 2014, 05:46:59 pm »

Ahhh glad to hear that about growing back lol. I have been following the new drugs for years now and am very optimistic about the sov/rib , but, do admit some anxiety about treatment.

lporterrn · « **Reply #45 on:** August 11, 2014, 07:22:16 pm »

If you are going to have hair loss, it usually doesn't show up until at least 6 weeks after starting treatment - sometimes after 12 weeks. Sometimes we see people lose a bit of hair after treatment is over and they don't associate it with the meds. Something I learned in nursing school was if someone has had sudden hair loss, you ask them if they had a fever 6 to 12 weeks ago - often explains it.

HepC53 · « **Reply #46 on:** August 11, 2014, 10:16:05 pm »

Well my hair is falling out Sovaldi/RIBA started week 3 Saturday. Apparently I'm the exception. Although I've heard of others but can't verify their treatment was the same. I was told of by one of the tech's at the hospital where my blood was drawn. My scalp burns and itches. Now admittedly I had some hair loss prior but the amounts if hair is freaking me and my husband out. In fact, I was hiding it from him I thought. I hope the rest if you can bypass that symptom. All in all it's not terrible and in comparison to the stories I've read of those who suffered the old treatments, I count my blessings.

drayd4 · « **Reply #47 on:** August 12, 2014, 01:55:48 pm »

After Carols stay in hospital friday and saturday ,receiving 3 pints of blood , she's feeling much better we had 4 week checkup today even though. friday made 4 weeks we were told that the virus was almost undetectable. we were very pleased . they did reduce the dosage on the ribavirin hoping that she will maintain blood levels . I hope every one keeps doing well and defeats this awful. disease

virgha828 · « **Reply #48 on:** August 12, 2014, 02:57:21 pm »

As i wait to leave for my appoint to get my first lab results i have a little demon nagging in my ear... Ugh!

rainbowray · « **Reply #49 on:** August 12, 2014, 03:10:20 pm »

dray,
Glad that Carol is better, so keep an eye on the symptoms even with the lower dose.
It is good the dose is lower but vigilance is called for here. Water is key, sips all day long. Wonder what almost undetected is, hope next test=0

unsure · « **Reply #50 on:** August 14, 2014, 08:30:45 pm »

Thought I'd post an update. I'm on the three drug 12 week combo. Week 7 this Friday. Undetectable week four. I'm staying very reserved I'm a responder relapser from 2007. I'm hesitantly hopeful. I'm afraid to write it down but not many symptoms. I actually feel pretty good. I haven't missed any work , a little itching and my anxiety level is a little high. I had 2 days of pretty bad joint pain but nothing like the 48 weeks of torture. At least for me. Still don't know how I made it. Thanks to God. 5 weeks left. Each time I toss out a ribavirin pack I'm excited and worried.

Mike · « **Reply #51 on:** August 14, 2014, 10:27:35 pm »

Hey Unsure,

Good deal! I did the same combination, finishing in April. I achieved an SVR12.

You're more than halfway there and undetectable at week 4!!

That's, a big, big step in slaying the dragon!

Keep your head up and eye on the mark!

Best wishes, Mike

Tess1971 · « **Reply #52 on:** August 20, 2014, 08:35:35 pm »

Well, just got the word that the meds have been pre-approved and script has been called in today. I should have first 30 days worth next week. I am getting anxious now and getting myself as healthy as I can for this. Even got some shakes for extra protein and some iron since I eat very little meat. Any suggestions anyone has to dodge anemia I am completely open to. Treatment is being done with my gastro, but, my primary said he just had one of his 60 yr old patients just sail right through it and definitely feels better for it.

HepC53 · « **Reply #53 on:** August 20, 2014, 09:37:23 pm »

Yea Tess!!! I drink water all day, should make shakes more the side effects are like waves but I'm working, I'm in sales and it's always stressful Other than that I have had a lot of hair loss, cut it real short and getting lots of compliments. I have cut back on my exercise due to fatigue and my yard and house have slid quite a bit. I'll tell you though I feel like my brain is functioning better than It has in years and I'm wondering how I did everything I did all these years past. My second labs tomorrow, I'm excited! Feeling positive.
Wondering how RainbowRay, DesertGuy & Patsy are doing I've been watching for your posts.
Lastly I regret not using a more creative name on another forum I used CiaoC53 I'm hoping we can all say Ciao to this disease by this time next year.

Mike · « **Reply #54 on:** August 20, 2014, 09:44:34 pm »

Drink plenty of water - it really helps.

You should drink 1/2 your body weight in ozs per day.

In other words, if a person weighs 190 pounds, he/she should drink 85 ozs of water per day. A 120 pound person should drink 60 ozs, and so on and so forth.

Best wishes, Mike

rainbowray · « **Reply #55 on:** August 20, 2014, 09:52:34 pm »

Hi Hepc53,
I been meaning to post here but just slip, as I been posting in different threads.
I recently got my blood labs, and liver panel. All in range, and at week 4 I was declared undetected. I've been feeling the blues a little, and fatigue. But I still make it to my job everyday,even though I want to take a break. I get some pain in the liver still, but only occasionally, and not as bad as before treatment started 7 weeks ago. I have 17 weeks to go, and try to make it to the gym, but it take some effort.
I love the hot tub. MY Doctor said coffee is good, so he advised to drink a cup on the way back from my job, as that is when I am tired the most. Keep drinking lots of water. No hair loss here, or rash thank God.
Ok, Ciao for now.

Tess1971 · « **Reply #56 on:** August 20, 2014, 09:59:26 pm »

Water water water I will definitely take that advice. So Mike did you end your treatment with a viral load of 12? Is that what you meant by SCR12? I have a friend who got hepc years ago and almost cleared it herself and has a viral load of 10 and it has not changed in decades. She was lucky but not for my wild youth.
Fortunately I recently retired from a stressful job that I did for decades even with this virus and was so fatigued the last few years as I got older. My load is 3.5 mill and has been like that give or take a mill for decades. I am trying to go into this with a positive outlook that I will clear it..........ha to it ! This treatment will end for me at end of November, just in time for the New Year !

Mike · « **Reply #57 on:** August 20, 2014, 10:24:04 pm »

Yes. However, a SVR12 (sustained virological response 12 weeks) means that, once you're done with treatment (I did a 12 week course of SOL+INTF+RIBV), a viral load will be taken 12 weeks after treatment ends. If that viral load test is undetectable, you are cured (SVR12)!

This is the mark we all want to reach.

The protocol for 12 week treatment regime is that a pre treatment viral load is taken; one is taken 4 weeks in to treatment; and one at the end of treatment (EOT).

Obviously you want to be virus free at the end of treat (EOT12).

If this holds for 12 weeks after treatment has ended (SVR) - that is, you remain undetectable - it is termed an SVR12 = cured!

This is helpful to know when reading research articles as that is how treatment results are presented. If, for instance, an article read 96% achieved an SVR12, you know that 96 out of 100 people were cured.

Best wishes, Mike

DesertGuy · « **Reply #58 on:** August 22, 2014, 09:42:23 am »

middle of week 8 for me--15 1/2 to go and I envy everyone on a 12 week course--having a few rough days recently , mind and body,---and as I type this I realize when it started--When I pulled all of the hair out of my brush--might as well cut it all of and move on!!!

Tess1971 · « **Reply #59 on:** August 22, 2014, 10:08:39 am »

Thanks Mike........My meds are to arrive today by UPS from Specialty Pharm so I will be starting either tomorrow or Sunday. I am doing a 12 week also, but, just Sov and Riba since I am geno 2b. I will have to stay indoors most of this first week since it is the dog days here of August right now. Temps in upper 90s with indexes in 100s for most of week, yuk. Did you take the sovaldi at same time as riba?

HepC53 · « **Reply #60 on:** August 22, 2014, 10:40:49 am »

Hi Dessert Guy, thanks for checking in, you're the only other person I know with hair loss. I'm getting use to the short cut but as I looked in the sink today I wondered how long till I just have to buzz cut. Beginning of week 5 for me. Got my blood drawn yesterday this time they will check the viral load too. Letting all kinds of stuff slide, trying to get my family to do some things on my own. My therapist is pushing me to get an antidepressant Went to see my GP for a second opinion because I don't want more pills. I held it together until I started talking about the stuff I can't keep up with, lost it over the two $5.00 plants out in my yard that may die if I can't find the energy to plant them. They're still out there! Well long story, long, the script has been waiting for me at CVS but I don't know should I try the happy pill?

DesertGuy · « **Reply #61 on:** August 22, 2014, 11:03:07 am »

Well I am a anti happy pill guy----but I am a medical Marijuana patient here in New mexico--believe it or not--I have found a strain that does not really get me high, but it is high in CBD count and really calms me in the mornings after my morning dose---talking about losing it, a few weeks ago here in the desert we had a flash flood--my wife got caught in fast water and ruined a new car--I arrived on seen and went SO BALLISTIC that both the wrecker guy and my wife were in awe---had to have been the pills!!!!

HepC53 · « **Reply #62 on:** August 22, 2014, 11:53:47 am »

I'm glad your wife is OK hopefully your insurance will replace the car without too much red tape. Yes I have find myself yelling at my 13 year old daughter everyday when I get home from work. I have realized that I always did everything for everyone and now I am resenting their dependence on me. I even told my husband to make his own car appointment. Something happens to us when we have to face the fact that we may not be whole again; it gets pretty deep. My reality is if something happened to me they don't even know how to use the washer & dryer let alone know how to access bank accounts etc. My daughter called me a doormat, my husband said "it's not all about me" and I just want someone to offer to dig me two lousy holes in my yard. This weekend I'm going to get out the pick axe and get all my anger out and plant those two plants and if I'm a basket case by then perhaps I'll try one pill. Oh and why can't I be one of those people who loose 30 pounds!!! I think this is called RibaRage or in my case RIBA Rag. Thanks for letting me vent.

DesertGuy · « **Reply #63 on:** August 22, 2014, 12:07:42 pm »

Hey vent away-------My life sure is not what it used to be either---am sure wondering what next year(post treatment brings)---have been unemployed now for a year--with the attitude I have now, I'm sure I am unemployable--maybe it will be different in 4 months--have isolated myself so much, not really interested in much outside my little world--and when I watch the news and the turmoil going on, kinda glad I'm not part of it

unsure · « **Reply #64 on:** August 22, 2014, 12:26:30 pm »

Reading everyone else's posts is scary. I'm having very few side effects. A little anxiety. I actually feel better than I've felt in years. The fatigue is gone and the anxiety makes me want to do cart wheels down the road. I was undetectable at week 4. I'm moving into week 8 today. If I don't obtain svr12 I'm not ready to go back to the fatigue. Being a responder relasper from 2007 keeps me worried.

Tess1971 · « **Reply #65 on:** August 23, 2014, 09:37:02 pm »

Thats great your not having much side effects…….I found reading so many of peoples side effects have scarred me at times. I will be starting tomorrow and am having some anxiety about it right now - whah! I had it on my calendar to start either tomorrow or monday, but, figured I need to not put it off. I sure hope I am lucky enough to have limited side effects from the ribavirin. I will be taking 400mg twice a day. Any suggestions as to best time to take the sovaldi?

unsure · « **Reply #66 on:** August 23, 2014, 10:09:02 pm »

I take the solvaldi in the morning with my first ribavirin dose around 8a. Be sure to eat first then dose around 30 minutes later. Take the 2nd riba around 7p after dinner so you can sleep. Pre medicate with Tylenol and benadryl 30 minutes before your peg injection. Good luck. Drink lots of water and get plenty of rest.

Tess1971 · « **Reply #67 on:** August 23, 2014, 11:32:31 pm »

Thanks………I am getting hyped up now and ready to go forward. I have had this virus since the 70s.

jberlin · « **Reply #68 on:** August 24, 2014, 01:26:20 am »

Tess, sounds like Hep C has had a free ride in you long enough! Go get 'em girl! See you in the cured club in about 24 weeks! Best wishes, jack

Tess1971 · « **Reply #69 on:** August 24, 2014, 01:33:02 pm »

I take half of a diuretic (12.5 mg chlorthalidone) to keep my BP low. Does anyone know if this will cause any issues. Since I am taking sob/riba in am and riga in PM I was planning to take the diuretic with my vitamin at lunch time. Today is day 1 for me. Yowsers !!

Mike · « **Reply #70 on:** August 24, 2014, 02:01:14 pm »

It shouldn't be. I take/took Lisinopril - HTCZ, which has a diuretic, and had no problems. You might check with your doctor if you're concerned.

Also the Pharmacy that shipped my medication ran threw all my prescriptions before I started just to make sure there would be no counter actions.

Best wishes, Mike

HepC53 · « **Reply #71 on:** August 26, 2014, 01:58:55 pm »

Into week 5 Sol/RIBA

Start: AST 54. ALT 99
Viral load 3.2 million

Week 2: AST 19. ALT 20
Viral Load not checked

Week 4: AST 16. ALT 12
Viral load 15 (deemed undetectable)

I don't know why I'm so apprehensive to believe that 1/3 the way through I'm out of the weeds.

jberlin · « **Reply #72 on:** August 26, 2014, 02:09:25 pm »

HepC53 - Over 5 logs in 4 weeks... I'd call that a success and proof the treatment is working. And your enzymes really improved. Keep taking the meds and get cured. Best wishes,
jack

rainbowray · « **Reply #73 on:** August 26, 2014, 03:24:53 pm »

To HepC53,
Your numbers are like mine at week 4, It means you have a great percentage of
getting SVR/12 . 93% or better. It is worth the aggravation now, later you can dance.
I'm at week 8 now, and with 16 weeks to go I am taking it one day at a time. It is well worth it, and when I'm done this time of trial now will be a pleasant history.

Mike · « **Reply #74 on:** August 26, 2014, 05:54:43 pm »

Congratulations, HepC53,

This is a big, big milestone! Best news you could get!!

Mike

unsure · « **Reply #75 on:** August 26, 2014, 07:21:08 pm »

Okay today I've been as mean as a bull. I'm scaring myself. I hope I'm just tired, this past week I haven't slept well. I knew as soon as I wrote down not many side effects I'd get hit like a bull. Four more weeks. I'm only able to push through for the hope at the end.

Tess1971 · « **Reply #76 on:** August 26, 2014, 11:32:48 pm »

wow Looks like everyone is doing great here so far. I just started and am only on first week. I hope I do as well as all of you are.

lporterrn · « **Reply #77 on:** August 27, 2014, 10:37:46 am »

Quote from: unsure on August 26, 2014, 07:21:08 pm

Okay today I've been as mean as a bull. I'm scaring myself. I hope I'm just tired, this past week I haven't slept well. I knew as soon as I wrote down not many side effects I'd get hit like a bull. Four more weeks. I'm only able to push through for the hope at the end.

Hi Unsure - your post brought back memories of my last month of treatment. This is the challenging part. It helped me to lower my expectations, simplify my life, keep my eye on the goal, and engage in activities that brought me pleasure. Also, I took an antihistamine for sleep. When you are done with treatment, you will likely recover quickly. Four weeks goes quickly, except when you want it to!

Hart · « **Reply #78 on:** August 27, 2014, 02:53:40 pm »

I have kept watching the posts from everyone in this thread and I can so relate. I started into my 4th week of S/O & Riba and the nausea, anxiety, insomnia, forgetfulness and just being a mean person is awful.
My doctor said , oh there are no side effects your going to be fine, this was when she was going to do the interferon first until I asked her why can't i do the latest tx. She then decided yes I can do the new tx and that she wasn't going to talk about interferon with anymore patients starting with me!
At least I know my anxiety and rage is induced by the RIBA. But I don't like this person. 9 more weeks to get me back.
I do consider myself very lucky to be on this tx considering the cost and even at my lowest I am very grateful I am being treated and I didn't get diagnosed until these milder txs were available.
Next week they will test me and see how it's going.
We must keep moving forward.

lporterrn · « **Reply #79 on:** September 02, 2014, 10:50:46 am »

I know you don't like the medicated person Hart, but be gentle with this temporary person - you are going through a lot!
(Your doctor's statement, "oh there are no side effects your going to be fine" is so misguided!)

unsure · « **Reply #80 on:** September 02, 2014, 11:17:51 am »

Good morning, I added benadryl a few nights like you suggested and I feel like a new woman. Probably helped having a 3 day weekend too. The mean lady is gone for now. Week 9 and moving into week 10 on Friday. September 25 last day. 12/25 will be 1st day for drawing if I have achieved svr12. Wow

Tess1971 · « **Reply #81 on:** September 03, 2014, 12:09:02 am »

Im only on week 2 now and I am sleeping better already...but less hours it seems. I find I am more emotional. If I watch something that is even slightly sad I get all teary. even if I hear something sad in news or on a show my eyes get full of tears and I feel like boohooing....lol

rainbowray · « **Reply #82 on:** September 25, 2014, 06:08:41 pm »

Hello All,
Here is my 12 week update since I started this sovaldi/ribavirin combo. Got my bloodwork today, All markers in range including hemoglobin and hemocrit.
Viral load still undetected.
I am thrilled to the core, now have to coast home for 12 more weeks. I am tired mostly at the end of the day when I arrive from my job, but I am grateful still able to do my job.
The main side effects otherwise is itching, but no rash, and moody with ability to give a quick and offensive remark if anyone approaches me with any questionable action. It is funny though, at my job I am quiet as a mouse.
I have been on mostly a high grade healthy diet, even cutting back on red meat for now. Been feeling the healing in my liver. Sleep is better especially since I got a bar of Dead Sea Mineral Salt soap, and some great baby lotion at Whole Foods.
Exercise is now the key, I think. I have been lacking the last few weeks so now off to the gym is my goal. Can't get away from the thought the virus may make a comeback after treatment is over, but I think that is a natural process. I had some doubt when I received my latest lab work and for nothing, as it is quoted from my doctor "Stellar".

Mike · « **Reply #83 on:** September 25, 2014, 06:18:50 pm »

Hey, Congrats Ray!

I think you're going to slay this dragon (actually, you probably already have ) and the next 12 weeks will be to kick the living crap out of the corpse!

Best wishes, Mike

unsure · « **Reply #84 on:** September 26, 2014, 09:00:00 am »

So, today is my first day without medication. I'm nervous but I also know I've done everything I can to have a successful treatment. I was treated in 2007 and I'm geno type 1. My nurse practitioner is very hopeful and all literature is hopeful. I had my 12 week labs drawn yesterday. Results are pending. I'm going to put this in the back of my mind until December for my 6 month labs. I wish everyone successful treatment and stay with the plan. I can attest if one day is ruff the next does get better.

lporterrn · « **Reply #85 on:** September 26, 2014, 03:03:08 pm »

Congratulations Unsure - welcome to the next leg of your journey.

Mike · « **Reply #86 on:** September 26, 2014, 03:33:59 pm »

Hi Unsure,

Congrats on getting through the treatment! Give the success rates of Sovaldi, I'm sure you'll reach a SVR12= cured!!!

Best wishes, Mike

Tess1971 · « **Reply #87 on:** September 27, 2014, 11:34:56 am »

YAY for you guys !! Great to hear these treatments are successful. Really makes me feel better and easier to hang in there. I will start week 6 tomorrow.

feralhorse · « **Reply #88 on:** September 28, 2014, 06:45:51 am »

Hi ya'll. I just completed sovaldi ribvarin, 12 weeks, geno 2. I did not really notice any side effect the first 4 weeks. As a matter of fact blood test at week 4 showed viral load below 15. I guess my point here will be caution. My white cells, red cells, plateletts all dropped and I became anemic. Gradually I had an anemic cough. All this was explained away as ribvarin side effects. Now for the meat. I have been done with treat ment 4 weeks. Wbc is still dropping, ast alt are higher than before treatment, hepc viral load is double from before treatment. I have developed skin infection and ulcers in my mouth. Low grade fever, insomnia, muscle spasms, and doctors are not able to explain this. I called a pharmacist where the meds were provided and they too are at a loss. I have an appointment october 8, this being sept. 28. I my doctor did order another round of blood tests which included a pathology report. The facility I go to posts results on a website which I just got this morning. Pancytopenia, which means all three counts described in blood count were decreased. Ok. I get that, but after a month? Doc said alcohol use, but that is not true. I do not drink. A new word was in report: neutropenia. I looked this one up and it is scary. Along with pathologist recomendation for bone marrow testing. Other words were normochromatic anemia, pancytopenia, thrombocytopenia. As best I can understand these, except neutropenia are more or less explained by ribvarin. But after a month today I feel more ill everyday. I am 54 and otherwise in very good shape. I work on a horse ranch much the same as I did 30 years ago. Now I feel like hammered crap. I am positive this has to do with the treatment. My hep c was aquired in the mid 70's from blood transfusion. My viral load was only 89,000 give or take when I began treatment, was only 69,000 when diagnosed in 1999. After 12 weeks of treatment it is 162,000.
Any ideas?
Good luck to everyone, just thought maybe this is something to be aware of and maybe someone else has not responded well to treatment?

rainbowray · « **Reply #89 on:** September 28, 2014, 11:05:32 am »

Hi feralhorse,
Sorry you are going thru this. I have seen another on this forum not get good result on sovaldi/ribavirin and he was Gen 3. A few on sovaldi/olyisio have had a rough go also.
Can I ask a few questions? Seems the anemia started earlier in your treatment, was any action done such as reducing the ribavirin dose, or getting hemocrit shots? N-plate for platlets? When you say your viral load went to <15 was it undetected or detected still. I read that after treatment with ribavirin, the ast and alt can rise, and then settle back. This is not a picnic treatment by any means, I am watching my blood work and even ordering my own from a private lab and paying, in between the doctors orders. Seems it is too far apart so I am more diligent. I don't know enough about your situatoin, but getting answers from the professionals saying they cannot explain, is unacceptable in my opinion. Please keep us updated.

Tess1971 · « **Reply #90 on:** September 28, 2014, 12:30:32 pm »

In all my research I have come across that there is always a small percentage of people who have negative results with treatments. Also, my worry had always been that I had a health issue that I was not aware of or my body was able to keep at bay and the treatment would cause it to come out. Ribavirin does note that is will exacerbate many health issue that are present. This is why I have been so strict with what I eat or take during treatment. Fortunately I gave up eating red meat and pork years ago and eat mostly organic, beans, fish, tofu, very little chicken or turkey and only if humanely raised and organically fed free range. All vices out the window, not even the slightest cheat during treatment.

feralhorse · « **Reply #91 on:** September 28, 2014, 02:57:28 pm »

Thanks for reply and info on ast alt. No dosage change. No shots. It was recommended I eat red meat to offset low counts. I did so along with a gr ea at deal of spinach. My treatment was done by a nurse practictioner. Get this, after treatment she inzisted I had missed doses, the only possible reason, essentially calling me a liar. I not only did not miss a dose for the duration I took meds almost precisely 12 hours apart. Within half hour anyway. Further when I insisted she sent me an email. Quote" There is nothing else we can do for you at this time. Wash your hands often and stay away from sick people". Unfrigginbelievable. That prompted me to insist on appointment with liver dr, some kind of ologist or another..which I see on the 8th of october. Re viral load I was told <15 was as low as lab could check. That did not make sense to me but at week 4 viral load had dropped that far and I wasnt having other issues so was not alarmed. The cough/anemia had.not begun yet. Since I posted this morning I have developed an ulcer in my throat now it feels like. I have one on my lips in the corner of my mouth, othe inside of my cheek, and every morning when I wake have small dime size spots of blood and salivs on my pillow. I often taste blood. I almost went to urgent care this morning. .I am weak. I apologize for whining, im at a loss. I dont scare easy, im a southern horseman after all. But this has me concerned.I dont know wher to go for help now. They are dismissing me as a liar and alcoholic, which I am neither. Further, more personal, I am in west michigan for some fool reason..in the south thete is still racial.bias. here everyone seems to think southerners are idiots. One doctor said"we like you here. You are not like some tothless guy from Alabama". They do not realize I work with horses because they are my passion. I was smart enough when I was 15 to grasp that a man that makes a living with his psssion will never work a day in his life
My iq is 154, a mite above idiot. At any rate I am still feeling poorly, have just awakened from a nap, and have work to do tomorrow. I dont see how, but my goal is to do exactly that. Yesterday I was so shaky and felt so odd I had my boss drive me home. I left work early. Not something I do. Work is my solace. Im going to ask about a couple of numbers now. My treatment ended august 23. On 9/9 my pateletts were 61, with the low end of normal range being 140. On 9/22 plateletts were 55. Wbc was 1.69 and 2.44, respectively. Normal low value is 4.0. Rbc was 3.44 and 3.53 respectively (to dates mentioned re labs) low normal 4.6. Ok, both rose slightly so of no great concern. Hematocrit fell 35.5 to 35 respectively. Mpv was 11.6 and 12.1 with high normal of 11. Bear in mind these are all after treatment. Hemoglobin 11.9 and 12. Low normal 14.
I realize this is not a forum of medical professionals however everyone here is a human suffering the same disease. I am at a loss, and hoped our humanness, if that is a word, would inspire ideas from this forum.
I do want to add that I did split a bix of wine over a weekend with a woman I met adter trea6. I had about 2.5 litres of red wine over 72 hour period. I cannot imagine that affecting things so drastically but when I told drs. that they latched on like a pitbull. .I am a stranger here, widowed, and this woman came and went from my life in a single weekend. I only mention it here in case there might be a true connection. My research has shown that alcohol abuse does cause problems but seriously, is that amount of wine abuse? Felt more like a warm buzz with a warm woman. Something I have not been accustomed to for almost 3 years, since my wife passed. I realize I am getting personal now but dang. Im alone except for work, and guess im tired. I've been wandering since she passed. The last thing she really said to me was make me promise I would go thru with treatment. So it kind of relates. I ended up in michigan and winters coming. I long for a southern breeze.
Thanks again and any advice is appreciated and will be considered. Please forgive typos. I am using my phone which has a very small keypad.

rainbowray · « **Reply #92 on:** September 28, 2014, 05:14:09 pm »

Hi again feralhorse,
I feel for you, because this ribavirin makes you feel alone in the first place. I definely would be concerned, your platletes are getting low. Below 50 is not cool, and if you start bruising easy go somewhere to check things out . (er or whatever). Get your questions with your appointment together. I am no Dr. but you need to keep close watch of yourself.
I have read that it takes months for the ribavirin to actually leave the system. It has a 12 day half life, so what you took 12 days ago is half in your system. You been taking it for 12 weeks so imaging the build up. May just take some time to feel better, and also look into the new treatments getting approved soon. Don't give up.
some on this forum have done treatment 3 times before succeeding. Don't do ribavirin anymore.

Mike · « **Reply #93 on:** September 28, 2014, 06:14:18 pm »

Hi feralhorse,

Sorry to hear about your experience.

Rainbowray gave some good advice, and make sure you have all questions answered when you meet with the specialist.

Make a written list of your questions and bring it to the appointment.

Lastly, there are some great treatments coming out shortly that don't include RIBV, and the success rates are great.

I'm sure you'll beat this thing in the near future.

Stay positive and keep your chin.

Best wishes, Mike

Tess1971 · « **Reply #94 on:** September 28, 2014, 08:08:21 pm »

The Specialty Pharm that dispenses the sovaldi and ribavirin to me gave me a copy of detailed pharm info on these meds. Seems they will not all be cleared from system for 120 days after treatment ends. Yowsers was my reaction. Also, using alcohol during treatment can hinder it as it inflames a liver that is already being overwhelmed with chemicals and a virus. Seems the labs my gsstro uses had different numbers as to what is normal range also. I started to get very tired after couple of weeks and then made sure of taking a good multivitamin and then adding protein shakes every other day as they also have iron as well as other ingredients that feed the blood. I use atkins since they only have one gram sugar and no vitamin A (which too much of is toxic to liver and it is in multivitamin) Your seeing a gastro/hepatologist is a good idea.

feralhorse · « **Reply #95 on:** September 28, 2014, 08:28:49 pm »

Wow. Im getting some good feedback. Thank ya'll. General concensus seems ribvarin is culprit. My alcohol intake was after treatment and was 2.5 litres of red wine over 72 hours. Im not feeling much better this evening and will be calling my doctor in the morning. I appreciate the input. I feel much worse now, actually 5 weeks after treatment than at anytime before, or during treatment. I wonder why viral load lowered to less than 15 then doubled original numbers by treatment end? Ifk even if the numbers I show are bad or not. Before treatment I was 89,000. Now im 169,000.

Tess1971 · « **Reply #96 on:** September 28, 2014, 08:33:52 pm »

I started treatment with 32 million for a viral load and am only just starting week 6 now. I will have more blood work done after this week which is half way mark, Dr did full blood workup prior to treatment, then just checked hemoglobin and platelets after week 2.

feralhorse · « **Reply #97 on:** September 28, 2014, 08:45:25 pm »

32 million? Did you feel ill? That really concerns me because I never felt ill until after treatment. 32,000,000? Mine is now only 169,000. I feel like a crybaby now compared to that.

Tess1971 · « **Reply #98 on:** September 28, 2014, 09:21:53 pm »

My Liver function panels were always in normal range. I found after so many decades that I was fatiguing easier and many subtle differences were surfacing like concentration harder etc… I did do herbal protocols over the years, but, has ceased everything prior to treatment. I do eat extremely healthy and get physical exercise and rest regularly to maintain. My viral load over the years has always been in the millions, got that way after first 20 yrs,prior to that it was in the thousands, but, I did indulge in alcohol and a stressful life which I am sure is what attributed to the higher numbers. I felt now was the time to do this treatment and see if I can get rid of virus before either I or my liver gets too unhealthy to handle it.

feralhorse · « **Reply #99 on:** September 28, 2014, 09:24:41 pm »

Well good luck. I seem to be of the 2 per cent that does not do well. Odds are you will reach your goal...

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