Hep C Discussion Forum

wizard · Member

HCV GT3 relapse after treatment

RAGDOLL · Senior Member

I think your doctor is wise. Much better to be able to avoid another round of RIBA. My husband, RC, did 2 rounds and it was very difficult with no success. You should do well on new SOF/VEL which is suppose to be released by end of June. We are waiting for that.... Should be a cake walk after the RIBA ride. Best wishes and stay strong and positive. CC

wizard · Member

My doctor seems to think that Vel (which has been fast tracked by the FDA as a game changing drug) will be approved for use as soon as late June, early July......at least that's what the Gilead rep tells him. He thought the Sof+Daklinza+Riba would be needlessly harsh and may not work, while the early results of Velaptsivir are so promising and likely does not require Riba. Anyway, the current remains of the Riba should be completely cleared by end of June......and by then my knee will be recocered from surgery and I should be in good shape for anothre round against the Dragon!

-- Edited by wizard on Thursday 28th of April 2016 12:26:39 PM

wendyo · Guru

Sounds like your doc has a good plan as do you while you wait. Take care of yourself as your body rids itself of the riba, try to have some fun (well not the colonoscopy!) June will be here soon enough.

Canuck · Guru

Wiz,

I have read, and considered the trial study data, the same as you and your doc are, re: the older study(s) results ... which seems to indicate that adding RBV to SOF/VEL did not show a significant enhancing improvement compared to the SOF/VEL alone. Ask your doc if he knows anything more about the GS-9857 (the NS3/4A) they are adding to the SOF/VEL regime - I have not been able to find out "very" much about this new GS-9857 stuff, other than it has some claims of superior design and effects, and I am on it!

Your doc says SOF/VEL might be available to you (in a little while?), how so??, by trial?, are there no VEL trials you can be recruited into down there???, or, does he figure VEL going to be fast tracked and readily available on the U.S. market that soon?? That's a few times now, I have heard mention that VEL might be available quite "soon" (outside of a trial).

Good you know your F2 fibroscan score now, and that your ALT is nice. Hope the effects of the first treatment is ever dissipating for you now.

I hope you are following tkflex36, webtomass, pablito, and my thread (GT 3, 4, 4, and 3a respectively) - all except tkflex36 had GS-9857 added. Also an older thread billym, GT3, who cleared on 24 weeks SOF/DAC ... something to read, while you are waiting!

Hang in there, sounds like very good idea to tidy up the loose ends in the meantime. smile C.

-- Edited by Canuck on Friday 29th of April 2016 01:22:57 AM

singsong · Veteran Member

Hello, Wizard. Your doctor seems to be on top of this. Wait for the better meds. Your labs would indicate you're in pretty good shape, albeit with HCV.

Tig · Admin

That will be an excellent protocol and if you can get approved and started by summer, you should do very well. There are still trials that are recruiting in some areas if you're interested.

wizard · Member

So, I got back from the doc and his recommendation was that with a Fibroscan of F2 and ALT/AST in the low 20s he'd rather that I wait until the summer and try Gilead's Velpatasvir in conjunction with whatever Gilead recommends. This gives my body time to finish clearing the last round of RIBA in case the recommendation for GT 3 is Vel+Sof+Riba, although he claims that Gilead is indicating that the Riba may not be necessary and would be my preference.

In the meantime I'll get the colonoscopy I have been avoiding and maybe deal with my High Blood pressure.....

Doc says Gilead's Velpatasvirwill be ready for general use at the end of June.

-- Edited by wizard on Tuesday 26th of April 2016 08:25:17 PM

wmlj1960 · Moderator

Wishing you well Wiz. I also relapsed after 24 wks Sov / Riba then went on to achieve SVR 2nd time around. You will too. Let us know how the GI appointment goes. smile

Cinnamon Girl · Guru

wizard wrote:
Today I go back to the GI to find out what he proposes next......I want to slay this dragon!

... and you will do, Wizard, I`m quite sure of that! smile

Best of luck with your appointment today, let us know what your GI says.

wizard · Member

Today I go back to the GI to find out what he proposes next......I want to slay this dragon!

wizard · Member

Thanks for all the kind words, my GI appointment on 4/26 can't come soon enough! I'm hoping one of these combo's works! I was undetect in 30 days on Sof/Riba, so hopefully adding another DAA will knock out whatever it was that hid for five months and came back to haunt me....

Zlikster · Guru

Hey Tig mate :)

all good, keeping quite low n quiet until PCR results (EOT+12w on 15th of June)....so far, so good, baby liver ALT n AST. How are you doing?

Tig · Admin

Hey Zlick,

How's it going buddy? You're going to succeed this time. It's your turn! I agree with you totally on Velpatasvir, good stuff and will really improve treatment success rates in the future. But the protocol you're on is a winner too. This is the best time ever for GT 3's!

Zlikster · Guru

Hi wiz fellow GT3 :)

sorry to hear for your relapse :( but good thing with Sof, you can use it again, just this time include another DAA in it. Sof+Dac-+Riba for 24w will do it i hope or wait for Gilead's Velpatasvir (seems it's bit better than Daclatasvir) and go for Sof+Vel+-Riba. As Cancuk pointed there are still clinical trials with Sof+Vel+GS-9857. Do not despair :) i've just finished Sof+Dac+Riba for 12w if i do relapse, i will be checking next Sof+Vel.

best

Sydhanrahan · Guru

Hi Wizard,

i can only imagine what going through 24 weeks of riba/sof, only to find out it hadn't cleared the virus, must feel like. Especially when it took such a long time to manifest itself.

You had the determination to endure 24 weeks of riba, I am sure you will be able to face the prospect of retreatment soon.

Whatever is recommended, I am hoping for you that this next time will work for you.

Syd

Linuxter · Guru

Hi Wizard,

Welcome and sorry to hear of disappointing past but being where you are, you know that all you need now are one of the newer, more effective DAA's as Trial or otherwise ... Geno 3's a bear ... you've got this though ... you're in great company and everyone here will reach out to help in any way that they can.

Wishing You Well,

Dave

wmlj1960 · Moderator

I too am sorry to hear this. I failed 24wks sov/riba also so I know how you feel. But I didn't give up because I knew how fast much more effective meds are becoming available now days. You'll get hooked up with the winning solution soon, maybe with sovaldi / velpatasvir / no riba. smile Hang in there Wizard.

-- Edited by wmlj1960 on Thursday 14th of April 2016 04:51:41 AM

wizard · Member

Thanks Canuck. I am still reeling from the news and really bummed out after six months of feeling ill from Riba and the attendant emotional roller coaster. I'mn finding it hard to suit up to go through another round.

Canuck · Guru

Hi Wizard,

Sorry to hear of your troubles.

Others, of experience here, have offered good advice, as to what "re-treatment drugs" you and your doc might be considering next.

Mallani and Tig bring to your attention standard/recommended tried and true regimes that "should" be readily available to you.

Cinnamon girl, robertamx, ragdoll (and now, myself as well) mentioned "trial" drug regimes, such as sof/vel (with or without riba) and/or sof/vel/GS-9857 at varying lengths. Aside from the differing sof/vel/GS-9857 combo regimes, there are other new drugs out there too, that might be considered for you as a TE (treatment experienced) GT3, some of those also might be more readily avaliable to you via trials.

Print off, read, and bring with you (to your doc), copies of trials that other GT3's have been successfully partaking of, for an open discussion with him about what drug regimes could be considered for you, and what could possibly be available to you.

Some of these very promising trial drugs are not yet available to people, except, by being able to participate in a trial - so worth exploring ALL possible drug availability, thoroughly, with your doc.

I do not know if any trials are available to you, period, (where you are, if your doc performs trials, or if he could even get you into one), but all options are worth considering, if your doc agreed/thought one drug regime might be better/more effective for you, over another.

The one sof/vel trial that comes to mind, without knowing very much about your particular circumstance, but just based on your parameters of being a TE (treatment experienced) GT3, and possibly a "moderate" F2/3?, would be NCT02639247 (referred to as Polaris 4).

I have no idea whether sof/vel with/without GS-9857 could even be a consideration for you, but it is worth exploring everything! We have 3 GT3 people here who are currently partaking of 3 differing sof/vel trials at the moment, and perhaps another is also about to enter a sof/vel trial here soon (we all have differing parameters, TE, TN, differing F scores for example). So if you and your doc are looking at different drugs, then look carefully at which trial drugs "might" fit your limitations, if there ARE any trial drugs suitable/appropriate for your parameters, and, if such a trial was currently running at the moment, then would it be the most effective drug combo of a correct duration for you.

I just didn't want to see you leave any possible "trial drug option" stone unturned.

Worth ruling velpa in or out for you, on the advice of your doc. As are, other newer drug regimes, not mentioned here yet - Zepatier (grazo/elba) based regimes, and, ABT493/530. These have been "trialed" on GT3s in the recent past as well. I do not have NCT trial numbers for these as I do not know of any "currently" running/intaking.

(Generally), my sof/vel trial is only for TN (treatment naive) cirrhotic GT3's - NCT 02639338 (refered to as Polaris 3).

You've had a big disappointment. No choice now, but to re-group. Do some research, print stuff off, arm yourself with some data (trials and success rates), take it to your doc to rule in or out what your options are, and figure out with your doc, what drugs you both think are best next. I'm sorry the first round did not work.

Canuck.

JimmyK · Guru

wizard wrote:
Thanks for that link. I supose I have to be patient.....I was for years,,,,,,but after six months of treatment I'm kindof ticked off that I bothered and at the same time impatient for what is next. When I got the genotype back was I was scared that it wasn't treatable, and now that has manifested itslf, at least for now....

-- Edited by wizard on Thursday 7th of April 2016 08:49:25 PM

I know all about being disappointed post crippling treatment. On the bright side I figured I deserved it so what the heck. Take another shot at it.

wizard · Member

Thanks for that link. I supose I have to be patient.....I was for years......but after six months of treatment I'm kindof ticked off that I bothered and at the same time impatient for what is next. When I got the genotype back was I was scared that it wasn't treatable, and now that has manifested itslf, at least for now....

-- Edited by wizard on Thursday 7th of April 2016 08:49:25 PM

-- Edited by wizard on Thursday 7th of April 2016 10:01:17 PM

JimmyK · Guru

Also take note roughly one year ago a young woman found herself in almost the exact same situation right down to the VL coming back in at 7M.

Looks like others did Harvoni and RBV after similar relapses.

http://www.medhelp.org/posts/Hepatitis-C/G-3-relapsed-after-24-weeks-of-sovaldi--RBV/show/2456012

Keep shaking the bush bro and personally I do not connect it to cirrhosis but instead to the dreaded Gen 3. Don't sweat it you will get it right next time.

Regards Friend!

JimmyK

JimmyK · Guru

Hiya Wiz.

Have you read up on this thread?

http://hepcfriends.activeboard.com/t55326183/gt3-relapser/

Check the ZMan

wizard · Member

> 24 weeks SOF-RIBA should have done it. It sounds like chirrhosis may be involved,Have you had a fibroscan done? <

I had a FibroSure scan done whch revealed moderate scarring. I am not sure what that means in the real world but it doesn't sound that great. I wish the 24 weeks pf SOF-RIBA had done the trick as by the end the fatigues and joint/muscle pain was really debilitating.

> SOF -Dac- riba X24 would be next. <

I have to see what the GI says, but my dilemna is wondering if this is the path to go or if I wait for stronger direct acting agents or try and enroll in one of the clinical trials. My concern is that the relapse may mean the surviving Dragon RNA is of a more virulent strain meaning the initial treatment was disadvantageous and I don't want to repeat that. But I have to juxtapose that thought with the reality of the fact that I have had this disease for 35 years, and many of those years I lived pretty hard....

I really the support, thoughts and advice from everyone who posts here!

RAGDOLL · Senior Member

Welcome to the forum Wizard, You came to the right place. Sorry about your relapse, but there is stiil hope for you. Look into the Gilead Poiaris trials which looks like they are recruiting in you area. Best of luck and please keep us posted. Friends in the forum have had your experience have lots of good information. Take care. Chris

Cinnamon Girl · Guru

Hi Wizard, welcome! I`m glad you decided to join us!

Very sorry to hear about your relapse, you must be so disappointed. Yes, you were unlucky but you`re certainly not alone in this. The treatment options are getting better all the time and your chances of beating the virus next time are excellent, so you have good reason to be optimistic.

Other people have already mentioned the best options for your next treatment, and you could also consider applying to get into a clinical trail as an alternative route. Gilead has some excellent trials currently recruiting, the Polaris trials, with the drugs that RC (robertsamx) mentioned, Sofosbuvir/Velpatasvir/GS-9857, which are for all genotypes.

Best of luck with your next GI appointment, let us know how it goes! smile

Sydhanrahan · Guru

Welcome Wizard,

you have found the right place. Many of us have walked the same long path as you. I caught Hep C in early 70's and found out in 1994. I told few people, including myself, I think. Just went into denial and thought I would be one of those people for whom the "sleeping sickness" wouldn't wake up.

Anyway it certainly did. Good luck with your treatment. I did sof/dad/riba for 12 weeks and now am doing a further 12 on just sof/ Dac.

I have a friend who did 24 weeks of riba last year. His only symtom was fatigue - so maybe you'll be one of those lucky ones.

In the meantime, there are a lot of people to support you here - many of whom have a fantastic body of knowledge at their disposal.

Syd

robertsamx · Guru

Hi Paul, Welcome from me too! 24 weeks SOF-RIBA should have done it. It sounds like chirrhosis may be involved,Have you had a fibroscan done?

SOF -Dac- riba X24 would be next. however the new drug velpatasvir is coming end of June this summer ,and using SOF as the treatment backbone and adding velpatasvir for 12 weeks I.M.O. Is the one to wait for, and it is W/O RIBA. And the next one coming is a triple--SOF-Vel+9857. That one will knock out most (3)of the big spokes in the virus. You have the virus running and it's a pretty good hider, keep swinging hard! We are all pulling for you!! RC

mallani · Guru

Hi and welcome Wizard.

Sorry to hear about your relapse, but with Geno 3, these things happen.

Do you know your fibrosis status? Biopsy or FibroScan is the best way to find out. This makes a big difference to your chances of success, despite what the Trials say.

I'd be looking for Sovaldi/ Daclatasvir/ Ribavirin for 24 weeks.

Best of luck. Cheers.

wizard · Member

Thanks, Tig!

JimmyK · Guru

Beat me to it. I was just reading Core Concepts. Good information!

Jimmy

Tig · Admin

Hey Paul,

Yeah buddy, Interferon is a mutha. It was effective, but it did some damage too. I wouldn't want to include that and Riba in the same mix again. I've said before that I would do it if that was the only option, but I'm quite happy I don't have to. There are so many new protocols in the pipeline. I'll do some more research and if something jumps out at me, I'll be sure to give you a shout.

Here's some more good stuff on GT 3:

Core Concepts Genotype 3

JimmyK · Guru

Can't say enough about good Insurance. I am very fortunate. Mine just approved re-treatment for me with 24 weeks of Harvoni and have my wife on 12 weeks.

$94,500 for her and

$189,000 for mine is $283,500!

Holy crap it would have been cheaper to just hire a hit man.

The V-Pack thingamabob at 12 weeks was $90k although that was a different Insurance Company last year.

Drug Dealers in suits.

wizard · Member

I'll do it again if that's what it takes! It seems that I have read varying reports regarding the efficay of daclatasvir on retreatment of GT3, but I'm hopeful that it works as it seems way better than Interferon.....I'm also anxious because I curently have good insurance that paid for my last round and I'm sure they will cover the follow up!

JimmyK · Guru

That stuff crippled me but if I had to do it again I would not bat an eye.

Hang in there brother!

Jimmy

wizard · Member

Thank you both for your responses and for welcoming me here, I'm going to check out the info. I have walked around with this thing for 20+ years and told precious few people. I was shocked when the doctor informed me of the relapse results and it's been slowly sinking in. Three months down the line I am just realizing how deeply affected I was by the Ribavirin as it now has largely exited stage left. It's hard to think about taking it again for another six months....

-- Edited by wizard on Wednesday 6th of April 2016 04:46:54 PM

JimmyK · Guru

What Tig said Paul. We want you here as part of the Family. This is not something to do alone and there is no need to. We come from all walks of life. Good guys, Bad guys, Good girls, and the ever favorite bad girls. ( Ok sorry I had to do it but I am a bit off anyway )

Make this a journey you share with us and it is an honor you have you here. Also remember YOU will be able to help others as well so it is a rewarding place to be.

Warm Welcome!

JimmyK

Tig · Admin

Hey Paul,

Welcome to the forum, I'm sorry to hear about the relapse. Fact is GT 3 is a difficult one and has resulted in relapses in others. So no, it's not that you're to blame, you unfortunately got a stubborn strain of the Dragon. I'm including some information, happens to be the same link that Jimmy has provided you, it's a good one. If you need additional information, don't hesitate to ask. Daclatasvir seems to be the go to DAA for inclusion with Sovaldi and Ribavirin. I know what a bear Ribavirin can be, but it is an important addition in some of these protocols, especially in retreatment.

I'm glad you've had the opportunity to look around and invite you to stay active with us. We've got a lot of helpful and knowledgeable folks here. Don't hesitate to ask for assistance. If you would like to fill out your signature line with some data, it helps us when replying. You can see what many of us have added to ours. I'll provide a link to that, as well as some abbreviations often used. Hang in there Paul.... You'll beat this!

Signature/Abbreviations

HCV Retreatment Guidelines

Genotype 3 Sofosbuvir and RBV Treatment-experienced Patients - Recommended
Recommended regimens are listed in groups by level of evidence, then alphabetically.

Daily daclatasvir (60 mg*) plus sofosbuvir (400 mg) with weight-based RBV for 24 weeks is a Recommended regimen for patients with HCV genotype 3 infection, regardless of cirrhosis status,‡ in whom prior treatment with sofosbuvir and RBV has failed, and who are IFN ineligible.
Rating: Class IIa, Level C
Daily sofosbuvir (400 mg) and weight-based RBV plus weekly PEG-IFN for 12 weeks is a Recommended regimen for patients with HCV genotype 3 infection, regardless of cirrhosis status,‡ in whom prior treatment with sofosbuvir and RBV has failed, and who are IFN eligible.
Rating: Class IIa, Level C

JimmyK · Guru

Hi Wiz!

Man I am sorry to hear that. Here is some information to take a look at.

http://www.hcvguidelines.org/full-report/retreatment-persons-whom-prior-therapy-has-failed

You are in my prayers friend!

JimmyK

wizard · Member

Well, the topic says it all. I have been lurking, reading this forum over the last nine months. I am pretty certain I contracted Hep C in the summer of 1982. My doctor noticed high Liver Enzyme readings in the late 80s and I was diagnosed in teh summer of 1995. For years I took Milk Thistle and went about my business. Last summer I finally went to the GI (because I heard of all these new drugs) and found out I have GT3. From July through December I took ribavirin and Sovaldi for 24 weeks. I was undetectable in 30 days, and my ALT and AST were both in the teens. I tested the same way at three month and at EOT. I went last week for the test to see if I had hot SVR12, only to find out my viral load was at an all time high of 7,000,000 and ALT and AST were in the 30s. I go back to the GI in a couple of weeks. He was very disappointed in the failure saying he hasn't seen many relapses like this. AM I just that unlucky?

What's next? Any thoughts and suggestions are deeply appreciated.

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