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Avatar universal

3A 24 weeks. Relapse.

3A.  Finished 6 months Sol and Rib 7/15.  Two weeks later my viral load had climbed back to 65 so I'm not 'cured'.  They say there's a 90 to 95 percent success with this but apparently not for me.  I think there's been very little study on this combo so I think their success rate might be a little optimistic. Apparently there's a new combo coming out 2015 w/o the rib. which is a horrible drug, even worse when combined with interferon.  I'm more depressed as a male I lost a ton of hair for nothing.  Now I hope some will grow back but after 6 weeks post treatment  I find I'm still losing it.
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Avatar universal
Thanks Flguy, yes we have seen that happen here before. Good point.

Hope all is well with you.
Helpful - 0
215858 tn?1420171556
I agree with FIGuy.  I read of another case (on another forum) of a man who never went UND while treating but SVRed at 12EOT -- so crazy stuff does happen. Be positive and stick around. V.
Helpful - 0
Avatar universal
Thanks.  Planning to in Oct for my three month.
Helpful - 0
96938 tn?1189799858
Just to make sure, you should get another viral load test in the near future.  We've seen a few times in the past that people have low-level vl shortly after treatment only to have undetected test a month or so later.  You should give it a try.
Helpful - 0
Avatar universal
I totally agree with Hector. Simply put, in trials the patients are handpicked. In the real world they are not and this makes for a poorer response than any of the trials show. The new drugs are still a vast improvement over the old.
Helpful - 0
Avatar universal
Thanks, Hector.  That was great info.  So I guess I was 89 percent.  Still, the odds were in my favor.  I think my big mistake (other than not waiting) was cutting back from 1200 rib after 3 months to 900.  I asked the doc that for the last month if he didn't want me to go back to 1200 but he said stick with 9.  Right then I basically knew I wasn't going to clear.  But I couldn't handle the side effects so it was either 900 or quit.  I never could make it all the way the last two tries so I decided to stick it out.  In hindsight, now that I know the results, I wish I had bailed.
Helpful - 0
6708370 tn?1471490210
So sorry to hear of your relapse. I know how disappointing that can be

For some, waiting for the "perfect" combo is not really an option and the progression to cirrhosis can seem to happen very quickly

Best wishes for your continued health and future SVR!
Helpful - 0
446474 tn?1446347682
I am sorry to hear about your relapse. I am sure it is doubly hard because you had to treat twice as long as most folks in the Sovaldi era.

Unfortunately right now no treatment is 100% so people will relapse and fail treatments. A whole lot less than ever before when with peg-interferon and ribavirin not even half were successfully treating usually for 48 weeks.

In the VALENCE trial treatment naive genotype 3 SVR was 93% (86/92) in non cirrhotics. For treatment experienced SVR was 85% (85/100).

The people in trial have to meet certain requirements to get into the trial whereas in real life people have other factors going on that can effect treatment outcomes. So we always see lower SVR rates than what we see in trials.

The GT3 daclatasvir treatment will be the following...

Genotype 3 with compensated cirrhosis and/or treatment experienced - Daklinza + sofosbuvir + ribavirin - 24 weeks

The SVR rate was 89% for GT3.

12 weeks of treatment - 99% of treatment-naive patients with HCV genotype 1, 100% of patients with genotype 1 who had failed treatment with either telaprevir or boceprevir and 96% of those with genotype 2.

Further out is Gilead's Sovaldi and their pangenotypic GS-5816. So far in phase 2 trails 100 percent of genotype-3 infected patients have achieved SVR4. Pretty impressive if that holds. They are hoping to formulate the combo into a one pill, once daily treatment. Phase 3 studies will be starting soon. STAY TUNED!

Hang in there. Glad you have time to wait for better treatments.
Hector
Helpful - 0
Avatar universal
Thanks for the feedback to all of you.  Again, I wish I had waited before rushing in to treatment.  There was no urgent need to do so only that I thought it was a user friendly cure at last.  When Solvaldi first hit it was all over the news.  Now I hope some intrepid reporter will do a national story on the percentage it didn't help so the public knows it isn't a miracle cure.

I'm really not devastated.  I had a gut feeling all during treatment that it wouldn't work for me for some reason.  Can't tell you why but I just did. So it wasn't a huge shock when I learned that two week EOT my viral load was at 65 when it should have been undetected.

I'm more mad at myself than anything because normally I am a cynic.  Again, the worst is the hair loss which is very depressing and now I've taken to the Ron Howard look of wearing a ball cap, indoors and outdoors.
Helpful - 0
1815939 tn?1377991799
I am very sorry that you relapsed. I know it is devastating. Just try to hang in there as there will be something for you in the future.

I agree with Can-do and you that the hype over Sovaldi was overblown. We are seeing a lot of relapses (at least on this forum). I am wondering how the numbers pan out in the rest of the real world (as opposed to the trials).

Of course, Sovaldi is curing some who previously failed Tx and that is good. I surely hope the new and upcoming combos will have high cure rates (in the real world).  
Helpful - 0
766573 tn?1365166466


So sorry to hear this. We hear constantly what a panacea these new drugs and seldom focus on the % who go uncleared because the % who clear is supposed to be so high.

Double sorry about your hair. I treated with different meds tho Riba was one of them. It is going to take a while for medication-related hair loss to stop plus the time period it takes for hair to grow back after all that. But in most cases it does :)
Hang in there.
Helpful - 0
Avatar universal
I hope it works for everybody but since I started treatment only weeks after it was approved before any user data was out I don't want people to think this is the miracle cure they have all been waiting for.  It's not.  That's why I am now reluctant to buy the hype about the new drugs coming down the pike.  I should have waited before jumping into an empty pool.  I have learned my lesson.
Helpful - 0
Avatar universal
Totally agree.  Just read another post from a 3A.  It should be more like 60 percent.  I think Sovaldi was overhyped to justify a grand a day.
Helpful - 0
Avatar universal
Very sorry to hear this. Just try to keep your head up and get ready to fight another day.

You said..." I think there's been very little study on this combo so I think their success rate might be a little optimistic."

Have to agree with the success rate across all genotypes at least on this site. Way to many relapses with what was touted as a miracle cure drug.
Helpful - 0
Avatar universal
D:  Did you see the reference to the announcement that daclatasvir is approved for treatment by the European Commission.  I have read about studies on this med in New Zealand, where Gt3 is prevelant, and my Dr, last visit, said there are very promising studies on this med in the US.

I am off to read the article now. Rather than me quote the aip address wrong, look for an entry, approx 3 hrs ago headed the Daklinza - that is the daclatisvir - has been approved by European Commission.

Good luck.  P
Helpful - 0
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