Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: abacomike on October 30, 2015, 12:16:08 pm
-
I was diagnosed with Hep C in 1996 - contracted in 1980 after blood transfusion. In 2007, took Ribavirin and interferon injections - failed to reduce viral load sufficiently and intolerable side effects. I have genotype 1a.
On June 15th, 2015, started 12 week regimen of Harvoni with 351,000 viral load. After 4 weeks, zero viral load; 8 weeks - zero viral load; 12 weeks - zero viral load; 16 weeks - viral load hit 151,000.
I was just prescribed Veikira Pak with Ribavirin for a 24 week regimen. Waiting for delivery of drugs today and will start tomorrow.
Has anyone out there had the same experiences with 2 trial failures especially after taking Harvoni and now taking or have taken Veikira Pak with Ribavirin? If so, what was your experience and what should I look out for?
-
Hello abacomike,
To my knowledge there is only one person on the forum retreating with viekira pak after harvoni failure. I believe he was supposed to treat for 12 wks and Doc ended his treatment after 8 wks because his VL dropped to undetected. He is finishing up on a 24 wk V-Pak / Riba regimen. The forum member's name is pappy. Log in, go to members - pappy, profile of pappy, show posts. He should be posting soon on end of treatment results. Best of luck to you on your treatment and welcome to the forum.
Brad
-
Abacomike,
>>On June 15th, 2015, started 12 week regimen of Harvoni with 351,000 viral load. After 4 weeks, zero viral load; 8 weeks - zero viral load; 12 weeks - zero viral load; 16 weeks - viral load hit 151,000.<<
Sorry about your result.. Just want to get an accurate progression... I am assuming that the 4, 8, and 12 wk tests you had were During Treatment where you tested undetected in each case.. Then you list the 16 wk result.. Since you were treated for 12 wks, I am assuming that this 16 wk result was the result of a test taken approximately 4 wks post treatment?
-
That is correct, Paul. I just received the Veikira Pak and the Ribavirin from the specialty drug pharmacy. Will be starting the regimen tomorrow morning. I am quite concerned about the side effects. I took Ribavirin in 2006 with interferon and the side effects were awful.
The Harvoni worked well for the 12 week regimen (0 viral load while taking Harvoni) but 4 weeks a after I stopped, viral load came back.
-
Hi Mike and welcome,
I'm taking the Viekira but I know there have been some that had VLs at the EOT with Harvoni but at 12 week EOT were undetected.I'm not sure how high the VL numbers were but I'm sure someone will post that has had it happen.Did you get a Fibronscan done?
-
Hi Abacomike,
I am on 16 weeks of Viekira,it was 12, now added another month. I had a tx failure in 2011 on similar drugs to Harvoni, an Ns3 and anNS5A and ifn and RIBA.
I am on week 11. I have not had a v/l since 2 weeks when it was in 50s so assume it went UND soon after that. My LFTS have all been good. In Australia they go More onLFTS then do another V/L 12 weeks post EOT.
I have been waiting 12 weeks for my resistance test results, they do them in batches of 50. I don't know when I'll get it. They tell me that resistant mutations go wild after a tear and change anyway. Also that previous tx and resistance are no longer a predictor of SVR. Viekira and ribas are a potent mix and you'll have more sxs than on Harvoni. Also 8 weeks may not. Be long enough to develop resistance anyway. I think you'll do well.
Stat close to the forum and get support. I do, as I am terrified of relapsing after going through it before, so I can only imagine how you feel. I know some who have txed 4 and more times.
You'll do well, they just didn't tx you long enough before. Cal :)
-
Thanks Cal. Good luck to you.
When I got the phone call from my doctor's nurse who handles all his Hep C patients and she told me that the Hep C virus re-emerged after 3 blood tests with 0 viral load, I became quite depressed. But, I obviously will give Vrkira Pak and Ribavirin "a go" as the Brits say. I really don't have a choice at this point. I have had Hep C for 35 years based upon what the doctors said was the cause - 2 units of blood given to me after back surgery in 1980. Diagnosed in 1996 or 1997 after a blood test.
Since my Hep C is especially resistant after 2 regimens, they decided on 24 weeks this time with Veikira Pak + Ribavirin.
If this doesn't work, I was told Merck is coming out with a new Hep C drug in early 2016. I just pray my Hep C virus does not become resistant to all treatments. Luckily, my highest viral loads were 351,000 which is why my liver has not developed cirosis (not sure of spelling). My liver functions are borderline - sometimes better than other times.
Thanks for the well wishes. I'm just a little scared right now that I'll never rid my body of this awful virus.
-
I'm taking the Viekira but I know there have been some that had VLs at the EOT with Harvoni but at 12 week EOT were undetected.I'm not sure how high the VL numbers were but I'm sure someone will post that has had it happen.Did you get a Fibronscan done?
Bill, never heard of a "fibroscan" before. Will as my doctor about that. I just know my VL and Genotype (1a).
-
Your doctor will know Mike.It's basically a ultrasound of the liver and tests the elasticity.From that they can tell how healthy it is.
-
Bill, I have ultrasounds of my liver about once every 18 months. Just shows a fatty liver, no sorosis or lumps or anything else. Thanks for the info.
-
I have a fatty liver also.I had a nurse tell me she did to and she didn't drink or have HCV and it just came from being overweight.It sounds like you're in good shape to beat this so have some faith.Us Viekirians make the best dragon slayers(don't let anyone tell you any differently). :)
-
I agree with Bill Viekarians do it Better! 8) Cal
-
Abacomike,
I understand your fear, I deal with it everyday while am txing. It's awful. You will kill this and yes Merck has that resistance drug coming out so all is not lost. 24 weeks ought to do it though. Have they done a resistance test on you? It won't really help come to think of it. :-\
We can support you through 24 weeks. You'll be ok.
LISTEN TO ME YOU'LL BE OK. Cal :)
-
Cal, thanks for the support. I take my first Veikira and Ribavirin tomorrow morning. I just hope I will be able to drive my car. The Ribavirin side effects, from my memory of taking the drug 10 years ago, were very bad - but I was also injecting Pegasus interferon at the same time. All I can do is go with the flow.
Thanks again Paul, Bill and Cal.
-
Only side affects i experienced (for Ribavirin ) were Dizziness , fatigue , insomnia , and a little nausea . I am still hep c neg but will know for sure in two weeks at end of treatment , then the wait for the three month final test . Good luck ::)
-
Mike,
I was on the Pegintron/Riba myself.Trust me,this is child's play compared to that.You may have some side effects but do what you need to do to beat this.As Cal said you'll be fine.
-
Only side affects i experienced (for Ribavirin ) were Dizziness , fatigue , insomnia , and a little nausea . I am still hep c neg but will know for sure in two weeks at end of treatment , then the wait for the three month final test . Good luck ::)
Pappy,
I only just learnt about you, I am so eager to know how you went retreating. Did you retreat straight away, or have a break? Can't wait to hear your 12 week EOT results! So exciting for you and re treaters like me! I would have been EOT in week and a half but now doing another month. So 16 weeks now.
I have had bad RIBA sxs that have floored me, so anaemic and weak, sweats, palpitations, weakness, nausea, insomnia, anxiety. But it gives up tO a 7% wedge so it's worth it. A couple of us have had a hard time with ribas. Others sail through. I had a bad time on them first tx as well. So Abacomike if you coped last time you should be ok. I had ifn too. Cal :)
-
Pappy, took my Veikira Pak + Ribavirin yesterday and just took my morning doses. The only side effects that were immediately noticeable was fatigue yesterday morning when I tried my morning walk at the local mall. After 1/2 way through, I had to sit for a few minutes and then drove home. Does not seem to have affected my ability to drive as of yet. I slept on and off for 3 hours yesterday afternoon - so tiredness is another side-effect I experienced.
My Primary care physician gave me Temazapan 30 mg capsules to help me sleep at night when I was on Harvoni, and he wants me to continue taking them do I can sleep better at night. I have not experienced any other side effects as yet because I just started taking the medications. If the side effects remain as they are now, I can handle it - however I know the SE's will increase because I've taken Ribavirin before (10 years ago) and it took a couple of weeks before the SE'd became pretty bad.
I'll check in again in a few days to update! Hope you are doing OK - and praying for you that your VL's are 0 for years to come!
-
Firstly mike,
Nice new avatar!
Yeah, now you're in the thick if it, deal with it as and when it comes up. You may sail through. Good to be prepared though. Well support you through whatever happens. Cal :)
-
Cal, I just clicked on "avatar", computer selected pussy cat - I'm no pussy cat but this will do for now.
Finished 2 days of treatment today. Developed diarrhea this morning and just a little fatigued. Otherwise so far so good. I will try walking again tomorrow to see if I have enough strength. I go to an indoor shopping mall to walk in air conditioning. Still very warm down here in southeast Florida.
-
It's a cool avatar!
If diarrhoea continues or gets too bad tell Doc, don't want you losing those valuable meds! 8) cal
-
Hi Mike, I've done the 24 Week Riba Cocktail. I survived and so will you. I blogged my entire treatment. Sorry for those who had to slog through it. I was tired, but that was the ribavirin more than anything. Be kind to yourself, get plenty of exercise, drink plenty of watr, minimise salt and sugar and stay in touch with everyone here. People here will be your lifeline.
-
Thanks, Philadelphia. Had the sweats for about 30 minutes last night - so I just lowered the A/C. Bit of insomnia even with the sleeping pills. Getting up now to take my morning dose with some toast and then will try walking again at the mall before the stores open.
Thanks for your support and the support of other on this forum. I'll keep plugging away.
-
I walk every morning too - the dog and I head down the road and do a big loop that brings us back home. Starts my morning off nicely! Have a great day :)
-
Good morning all,
I got up ready to face the world feeling great.Then you all went and wore me out with all that exercise talk,so after I take my morning dose I'm going back to bed. :)
-
Well, I did not go back to bed like you - drove up to the air-conditioned mall in Boca Raton. Did the full indoor circumference at a fairly good pace. I did have to sit for about 15 minutes before heading back to my car. When I got home, had some lunch and sat in my recliner watching TV. Must have dozed off because 2-1/2 hours disappeared from my day.
Feeling sharp shoulder pain and back pain today - very tired/weak.
Got a call from the pharmacy that delivered my Viekira Pak and Ribavirin- wanted to know how I was doing. Spoke to my doctor's nurse this afternoon and she wants me to have a series of blood tests on November 16th and another series on November 30th and then every 4 weeks after that. Already made the first appointment.
Still plugging away - side effects much worse than Harvoni.
-
Thanks, Philadelphia. Had the sweats for about 30 minutes last night - so I just lowered the A/C. Bit of insomnia even with the sleeping pills. Getting up now to take my morning dose with some toast and then will try walking again at the mall before the stores open.
Thanks for your support and the support of other on this forum. I'll keep plugging away.
Hi Mike,
I get the sweats thing and I'm sure it's related to the ribas, in me anyway. Yes have air con all night, it really. Helps. Cal :-*
-
I get the sweats every so often - probably not frequently since I have completed only 3 days of treatment.
AbbVie has a support program with a nurse assigned to the patient if you sign up for it. The number is listed on the Viekira website. So I called and registered this morning. Got a call back this afternoon from a nurse consultant who spent 30 minutes on the phone with me taking my history and medications I take. She reviewed the side effects - advised me about periodic blood tests (already have an appointment for November 16th), and was very informative. Remember, all these new hep C drugs were approved by the FDA on a "fast-track" method. The drug companies had to comply with the FDA's requirement to offer support services to patients and to collect data and report this acquired data to the FDA.
If you haven't inquired, you might want to consider it. They are prevented from sharing any data or info associated with your name to anyone. Supposedly anonymous - like I am patient 398 who is reporting VL's of "X" after so many weeks of treatment. These drugs are still in trials (long term) and info I provide assists the drug company and FDA in determining adjustments or changes or drug warning updates.
-
Hi Mike,
I'm in Australia but AbbVie does have offices here. I have access to my Gastro 24/7 (I have his mobile) and my GP is amazing so any issues I talk to them. I spent 4 days in hospital in the second week and my Gastro reported the Adverse Event to AbbVie.
Yes they are still collecting data, we are the first so we are guinea pigs for these tx drugs.
It sounds like your Nurse at AbbVie was really helpful. So good to hear that. Cal :)