ION-1 / ION-2 / ION-3 / LONESTAR / ELECTRON statuses

[still_above_dirt]

Hello all:

I thought that it might be helpful to all of us ION-1 / ION-2 / ION-3 / LONESTAR / ELECTRON folks to post an abbreviated synopsis of their HCV and post-treatment clinical trial statuses when they find out something definitive about their viral load, with as much info as they might be willing to share. This is or the benefit of us ION-"X" people so we can see how we are all doing, as well as for the benefit of others waiting and hoping to see whether sofosbuvir plus ledipasvir with or without ribavirin for 8, 12, or 24 weeks will comprise a viable treatment strategy.

I was going to try to start building a list of what I could harvest from this site, but decided that some people may prefer that I not do that, so, if people want to share their ION1/ION2/ION3 (and even ELECTRON and LONESTAR phase 2 studies) HCV status, they can.

I was thinking that, as much as people may be willing to share, that forum name, gender, genotype, liver Bx status prior to start of treatment, in which trial you participated, treatment regimen, whether treatment-experienced or not, whether PI-experienced or not, and since post-treatment viral load is quasi-blinded, whether you got the 24-wk followup invite or the sux2BU notification, or post-treatment private viral load test outcome, or declared cured or relapsed, would be helpful to share with the Community here and provide useful information to them. My status follows this post.

Thanx, all!

[Quest5245]

ION 3 - 8 weeks - no Riba
F
G 1A
VL 4 mil.
UND 2nd week
BX level 3 staging 3 to 4
Naive
Enz AST29 ALT18
EOT 8/4/13

Post 4 week blood draw due on 9/3
This is a great idea...our own trial data..will post more when infol available

Wishing everyone SVR forever!

[Geshmit]

Maybe useful too if people could post briefly in their summary if they had side effects and which?

[UKgirl55]

It's been so long I can't remember. Think I was ION1
Started back in Oct 2012
FEMALE - now 58
TX naïve
geno 1a
Stage 0 - 0 fibrosis
VL 14 million
ALT+AST always good

Gilead sofosbuvir/5885 - no riba
24 week arm, but only went as far as 14 weeks
UD week 2
SVR 24 - UNDETECTED as of TODAY!!!!!

[Geshmit]

Well done, UKgirl55.
Just got my 12 week treatment blood draw result (NOT EOT 12 week)- still UND, ALT 18. A long wait now for EOT 12 weeks.

UKgirl55 - may I ask why you only did 14 weeks? You don't have to answer, but I was wondering if it was because of side effects as it's interesting to find out how many suffered from them. Or did Gilead decide that?

thanks and all the very best

[grateful_to_be_here]

Observations about side effects
M
1a
24 with Riba
In week 17 of trial

I have no way of quantifying which drug causes sides but:
Runny eyes
Blurred vision
Skin rashes
Heightened herpes out breaks
Insomnia
Irritability
Greatly diminished cardio capacity
Tire easily

Some say its the result of the Riba

Has anyone on a non Riba arm experienced any of these side effects?

I have never heard that question answered

Thanks!

[Geshmit]

Oh yes, I also developed a bad skin rash at week 10 of 12week tx. (w Riba). Gradually faded with use of antihistamine and strong hydrocortisone cream