Starting Sofosbuvir GS 5885

[Renee543]

Hi, I tried Teleprevir last year and failed. The Institute called me last week to see if I wanted to be in this new study for Sofosbuvir GS 5885. I have not been able to get much info on the net except from the Drug Co.
They have one slot open and I need to be there tomorrow for my bloodwork and EKG. Is there anyone on Med Help that is in this trial or anyone with any info that would help me make this decision. I was so dis-hearted when I could not stay in the Teleprevir study. It is Phase 3, either 12 or 24 weeks and either with or w/o Riba.  It starts next week. Thanks for any info. Reen

[nobodyone]

So how long were you on treatment with the RBV and now you are done and waiting for eot results?  Hoping for the best for you and everyone here!  

[sofled]

Hi all,
still UND after w8 results. I'm UND by w4 (or perhaps w3).
Small sides, due to Riba.
No more sleeping problems, no rash, no eyes problems.
Waiting for EOT results....!!

[nobodyone]

I got to decrease my riba to 600 today!!  Yea!!  that should help me and maybe get rid of the noise in my head..although clinic said no body else has had that problem... I, too, don't think the RBV is needed, because so many have cleared the virus w/o it and only doing 12 weeks also...so that does make it hard to keep doing it but i know if i just stop it i couldn't stay on trial and i want to finish it for as long as i can.    We are getting free blood work etc and for years to come so i am so grateful for that.  Gilead was there at clinic monitoring the charts...I am now half way done now...  12 more weeks to go.

Glad everyone is doing well...I think would be okay to stop before 24 weeks..wonder why Gilead has it for so long if it isn't necessary???  Does anyone have a guess there, although i guess you have to have all these arms..still it would be nice to be done!!

[grateful_to_be_here]

thanks Renee! yes yoga helps me a lot - interesting that you felt worse after you got off the meds.

so far nothing about my treatment has been unmanageable - I think in the beginning it was fear of the unknown & you all have filled the vacuum as no one else has a clue about what we dealing with - certainly no one that sees me at the liver center except the led doc & I only see him when the study guidelines call for it. For example yesterday I had to go for another EKG so I asked him why - he told me that in one of the earlier studies with one of the protease inhibitors, presumably a Vertex derivative there were cardiac issues so the FDA mandated EKGs as part of the protocol in all future studies.

I got the impression yesterday though no one really said it like this - RIBA has no real value in the mix here yet if that's how it is trialed everyone may have to get take when 5885 is licensed, just like Interferon in some genotypes.

I am not being critical & most of this is subjective but in the big picture my point is without a forum like this where else could we learn any of this?

I am grateful - thank you to all of you that contribute here - it provides a glimmer of light for many of us in the dark - and just think of the millions of us with HVC that wont get the benefit of any of this for years to come.

[Renee543]

Alll those symptoms will diminish. After stopping meds I felt worse than ever when I stopped but that too will disappear. You will feel better and better and then finally realize you feel "normal" again. I'm glad you are doing yoga. It keeps your spine flexible and the energy flowing through your body. I go at least 4 times a week and it's made a world of difference.

[still_above_dirt]

RE: your July 9 reply to my July 8 question to you

Yeah, that's my understanding: after EOT+12 blood draw, it's either the invitation to schedule EOT+24 blood draw, or you get the dreaded SUX2BU phone call. That's how I interpreted the informed consent document and the local research coordinator agreed with that.

My hepC profile chronicled at http://www.medhelp.org/posts/Hepatitis-C/ION-2-treatment-status/show/1961807#post_9201100

My "outside-the-trial" EOT+6 blood draw results chronicled at http://www.medhelp.org/posts/Hepatitis-C/ION-2-treatment-status/show/1961807#post_9236643

My "trial-sanctioned" EOT+12 is scheduled for July 31st