Announcement from the CROI conference - 100% Cure! YEAH!

[Eki1]

http://www.aidsmap.com/Sofosbuvirledipasvirribavirin-cures-100-of-genotype-1-hepatitis-C-patients/page/2587294/

[flyinlynn]

Hi dlombardo

Welcome to the forum. This page is not a chat but posting questions that members answer. The best way to get your question noticed is to click the orange link at the top right of the page "Post a Question" so your question wil be noticed by more members.

The drug mentioned is a single pill fixed dose combo of Ledipasvir and Sovaldi. Rumor is that it will hopefully be FDA approved this fall in October and should be available to patients through their doctor by prescription a month or two later here in the U. S.

Are you seeing a hepatologist? What genotype are you genotype 1a, 1b, 2a, 2b etc...? Do you know the current condition of your liver? Do you have cirrhosis? Have you treated before? These are all factors in what treatment will be the best in your case. There are also new treatments that were approved late last year Sovaldi and another Olysio. The treatment with them especially Solvaldi with ribavirin possible with interferon has been very effective for many patients.

Also many here have recently been treated with the off label usage of Sovaldi with Olysio together with no other medicines and have had good results. I am waiting to do my 12 week post treatment test for the virus in September. At week 4 my virus became undetectable and I am hoping it stays that way.

My suggestion would be to see your liver specialist as soon as possible I here the offices are getting very busy with patients lately.

Also to get into a drug trial it helps if you are working with a doctor and clinic who are involved with clinical trials. That is generally how you would get on one at least that has been my experience.

Here is a link to clinical trials . Gov to search for trials near you

https://clinicaltrials.gov

Good luck
Lynn

[dlombardo4]

Can you please tell me how to go about getting this treatment. I have no idea where to start. I would appreciate any advice you can offer.  Thank you in advance.

[dlombardo4]

I am so happy that this is working for you and so many others.  I would like to het the treatment also but don't know how to get started.  Can you please tell me if this is a free scientific study being done and if so how can I become a part of it?  Thank you.

[rivll]

I sent before I finished..

Hopefully 7977/5885 w/ or w/o Riba will be the cure for Geno 1. I feel very optimistic.

[rivll]

I am geno 2 and cirrhotic. When I began the study 7977 still belonged to Pharmasset and even though they knew the odds of riba and 7977 were excellent they did not want to take me on, because of my cirrhosis. It took a lot of work on the part of my Dr. to persuade them, but I got in. There were 2 other cirrhotics in my group but one was geno1 and he relapsed.(He did not have 5885)
I did 24 weeks and felt pretty bad due to the riba but I am SVR.
My Dr. calls 7977/riba a cure for geno 2.
I

[Carlhcv]

Another tx option for us is always a good thing. But for them to announce that they have a 100% cure is false. That's all I'm saying. They had a 96% cure rate in this limited trial. They also had significant side affects in nearly half of the participants. It also sounds like the participants may have been cherry picked. Where is Hector. I'd like to hear his take on this.

[cheflady]

thats just fantastic news !!!

[gsx1250fa]

It appears that all participants that finished the Tx are still UND at 12 weeks post Tx. 1 person quit due to side effects...probably from the ribavirin. Some folks have side effects from the riba... and some don't... like myself. I am on 1200 mg per day. This possibly could be the miracle drug compared to FDA approved regimes currently offered. As a prior null responder to 3 Tx attempts with interferon (and the last including Victrelis)...this is a cakewalk and only 12 weeks. On the 3 prior attempts/failures with interferon...I had anemia, headaches, insomnia, rashes, swollen prostate, rapid weight loss, constant dehydration, horrible mental fog, severe anger issues...and the list goes on. I haven't had any of these side effects and I am in my last week of 12. From what I gather...Gilead is trying to 'fine Tune" their drug combo to an 8 week Tx regime without riba. The aggressive competition of the pharma companys to create a short term all oral Tx with little to no side effects is a huge positive step in the battle against Hep C :) I am thankful for this study as I am already cirrhotic and this is the first time in 3 years (4 attempts) to reach UND. Going into my 4th attempt...I had very little hope. Now there is a glimmer of light at the end of the tunnel.

[gerard11]

I agree with you. Some people in the studys are not as healthy ( besides liver disease) than others. So to see a person drop out doesn't surprise me. I find it interesting that you feel better now. I have asked others if they feel better on tx with Sofosbuivir, and have not heard any one else mention this. Are others in the trail feeling better too? This is a wonderful opportunity,  for anyone afflicted with this horrible disease, to get a chance of getting their life's back!!! Good luck to all participants in these hopefully life saving trials........

[Eki1]

It's been a miracle for me.

I was on triple therapy last year and was basically bed-ridden.  As an otherwise healthy 38 year old vegan, I was devastated to be so helpless.

I failed treatment and was kind of relieved because triple therapy was so difficult to tolerate.  I was a null responder.

I'm on this exact FDA trial of Sofosbuvir/5885/riba for 12 weeks.  I'm six weeks into it, and haven't felt a single side-effect...in fact, I feel better than I did while I was off treatment.  I've been undetectable since week 1.   This combination made me undetectable after six days of being on the drugs.  I've been undetectable ever since.

Treatment is harder on advanced cirrhotics.  I'm willing to bet that the failures were already in the throws of liver disease.

[Carlhcv]

This little part here bothers me:

Two people (8%) experienced serious adverse events and one person (4%) stopped treatment for this reason. The most common side-effects were anaemia (20%), depression (8%) and headache (4%). About 44% experienced grade 3 laboratory abnormalities including anaemia.

If one person, 4% of the total, had to stop due to serious side effects then they did not achieve a 100% cure rate. What else are they not telling us?

Gilead announced that they have the cure. That announcement turned out to be a little premature.

8% of participants had "serious adverse events". Not exactly the miracle cure that we are looking for.

[gsx1250fa]

Thank you. I was a bit "freaked out" when I got the pre Tx biopsy report. I expected to still be at stage 2 or maybe 3. I think the 3 prior attempts had something to do with the advancement...but I am not a doctor.

[rivll]

Wow, it sure did. You got this in this study in the nick of time. Very happy for you.

[gsx1250fa]

My 12 week arm is actually with the riba which I am glad I received. I wish i was on the 24 week since the riba doesn't bother me. Anything that might boost the success rate. I am geno 1a stage 5 cirrhotic (of 6 Ishak scale). before my first Tx 3yrs ago...I was stage 2. 3 yrs and 3 Tx attempts later...My disease advanced fairly rapidly.

[rivll]

Thank you for the post. This is very exciting! The article says they are also trying it w/o Ribavirin.
Either way, to have a cure for null responders is the best news I have heard in weeks!!

[gsx1250fa]

I am currently on this study (ledipasvir gs-5885/sofosbuvir (1 pill combined fixed dose)  with riba) and this is great news for a 3 time null responder like myself (Last Tx failure was trip Tx with victrilis). I have been UND (first time ever) since week 4 with only 1 week to go. I am grateful to say...no side effects this time :)  Hopes and prayers for all of us :)

[48weeks]

This is awesome news, thanks for sharing.