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Avatar universal

treatment quandary...

Hi all,

I'm new to this group and first just wanted to introduce myself. I was diagnosed with 1a in 1996 at age 19; no idea how long I had had it for but was diagnosed after a severe cholestatic response to oral contraceptives. I have been putting off treatment for years waiting for a treatment combo that would have a reasonable response rate as well as because of worries about resistance mutations (I have a degree in molecular biology and sometimes that kind of knowledge is a bad thing :P). This past month I finally made the decision to start telaprevir/ifn/riba combo therapy in the fall, and then as coincidence would have it, received an informed consent packet for the Pharmasset PSI-7977/BMS-790052 study. After doing a fair amount of research on advances in these antivirals, I scheduled an initial screening (July 22nd) to at least get some questions answered and keep my options open.

With all this going on, I decided it was high time I pull my head out of my @ss and join the online HCV community to get a much clearer sense as to the direction of HCV research now, not 3 years ago when I did my last "deep dive". Although it's been easier in a sense to stay clear of all the discussions and pretend like I have all the time in the world to treat this, I know I don't. It's time to get clear of this disease once and for all.

Soooo... I guess my question is: anyone else considering the Pharmasset study? Any discussions already going on here that would be helpful for me to jump in on? I did a search but just found one about resistance mutations (which was incredibly helpful, btw).

Thanks in advance. :D
20 Responses
Avatar universal

Hi there and welcome...The question on when is the best time to treat .is always a personal one  and more specific to your question of  :should I enter a trial or not" has been discussed here many times.

One of our members(specta) posted a thread a number of months ago ..and members listed all the questions they thought would be appropriate when thinking of entering a trial. I have put the link to that thread below...maybe some of those questions will be helpful when considering this trial

I am not sure if anyone here is in the PSI 7977 /BMS 790052..or contemplating it .. if someone is.... hopfully they will chime in.

As you probably already know from your research this  a small trial   that is Interferon free  and some arms without Riba.,

As you have mentioned ...always good to have your "head out of your a$$ " when it comes to HCV  :)  won:t go away on its own.

Again welcome ..and nice to have someone on board with a degree in  "molecular biology"

link to trial questions below..



Avatar universal
Spectda  ..... not specta ...... is the member....but we just call him Dave..

.sorry Dave  :)

1717054 tn?1316716253
First, I want to say welcome to the forum.  I am new as well and I have observed that any question or thoughts you may have, it has been addressed in this forum.   People have been great.
I don't know much about the Pharmasset study but many on this site do. Would you be in a blind study where you are not sure if you are getting the 'best' treatment?  Unfortunately, I don't live in an area where I can participate in any studies. so have never considered them.
What I want to tell you is that your profile and mine are very similar, with the exception of our ages.  I , too, found out in 1996 that I have the virus but I was 39 at the time.  I have put off treatment because I just was not sick, in my  opinion.  My levels have not been elevated much, if so, just crept into the high range. My biopsy in 2006 showed not complete bridging and not cirrhosis, Stated I had mild activity. So, for the most part, I have lived my life since then somewhat in denial, forgetting I have the disease.  However, like you, I know, now that I should do something and that I am probably sicker than I think I am. My VL is now at 7mil,  up 5 mil from 2006. I have been waiting for something better to come along, and that time has come. I would LOVE to wait to see if the Pharmasset trial is successful, but I hear that could be 3-5 years down the road.
I will be starting treatment sometime in the next couple of weeks, with Incivek, along with pegusys and copegus.
Good luck with your quandary.  I totally understand how difficult that is!
Avatar universal
I was/am in the same boat. Except I
am 36 and stage 2, gt 1b. I have opted for the boc/peg/RIBA as I really want this "journey" over with stat, and I don't want to f around. I figure 70% are pretty good chances. and, if it doesn't work, I hope the trials at that point will expand to nonresonders. Not sure if that's the smartest thing, but probably the safest bet....I hope.  
Avatar universal
Thanks for the welcome. :) I did already find the one post suggesting "questions to ask" and I'll be arming myself with those when I head to my screening appointment. I worked for quite a few years in clinical research so I'm pretty comfortable with the process and how to maneuver myself through IRB documentation, and thankfully with my education I've been able to get up to speed pretty quickly on the new developments in treatment. Where I'm hoping to find out more information is on the "anecdotal" side, the kind of things you can't search PubMed for. :)

Thanks for posting the link!
Avatar universal
Regarding the study, I would be getting a combination of PSI-7977 (nucleotide polymerase inhibitor) & BMS-790052 (NS5A inhibitor), with or without ribavirin. No PegINF unless there is no SVR24 at which point rescue therapy is initiated. That's one of the biggest pros of me doing the study -- avoiding injections and the serious side effects associated with the INF. I have a prior history of severe depression and that's been incidentally one of my physician's biggest concerns about me initiating treatment, so that's a definite factor. It's definitely scary going down the experimental path, though. Feeling very torn...

Best of luck to you as you start down the treatment path... *hugs*
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