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!

[penn1023]

Can you post a link to the specific sides and adverse events?

[Geshmit]

My doc and nurse were also decidedly uncooperative about my post TX issues. My new gastro is convinced they're related and wonders how they can think otherwise.; They've improved but I'm still not right.

When I had sides during tx, they were the same, giving me the impression they believed them to be psychosomatic. However now Gilead has published its topline results from the trial, they specifically mention sides and adverse events...

My 24 EOT test is in 2-3 weeks....fingers xd.

HNY to you too

[nobodyone]

I still have creaky neck and tinnitus from being on the meds for such a long time and my bones sometimes make noises when I get up etc, I think those are sides too.  I think after 24 weeks eot they will be less so I am hoping anyway.  I am betting Matt is okay.   He quit the meds by 14 weeks all of them, he was a smart guy!  We should have but out of fear I did sofi for 23.5 and RBV WAY too long.   Unfortunately we can't change that, just pray we stay cured and the sides go away!

[Willy50]

First off.....congrats!!!  I have seen very few relapse and I think you can take that 12 week to be virtually synonymous with a SVR-24.

I kinda got a similar confirmation, really no confirmation, just the lack of a call back for a back up PCR and the next scheduled 24 week PCR appointment. That's as much as this trial site will give.  I don't mind since I pretty much knew it based upon the 12 weeks w/ riba results and my early response to TX.

I have not been on a friendly basis with my doctor since I have been pushing fairly hard about my remaining AE's; post TX sides. I am afraid that it seems to be the classic response. They seem bugged that I am not just grateful about the SVR (not true, I am), and they just want to move on..... cure some more people, not deal with any post TX issues.......which are problematic, difficult to define, diagnose or treat...... and the results of which take too long to be very attractive to treating physicians.
Haha; I also am no joy to deal with and it is a less happy conversation than the "you're cured" talk.  : )

Generally speaking.....I am fine.... OK..... but I am not as well as those who did shorter treatments or those without ribavirin.  I believe over time I may improve, but the changes since ending TX have been relatively slight.  I remain hopeful that by spring I will have more confidence in the trajectory of my recovery.

(PS>>>>>and no..... the opportunity to talk about Matt never came up)

Happy new year to all......

willy

[nobodyone]

Well I got my confirmation, undetected!  Next is the 24 week test then done!   I was hoping they would be checking me for 3 years.  We shall see.

Happy new year 2014!

[still_above_dirt]

Merry Christmas and Happy New Year to you as well!

Here's one data point for you -- no relapse here -- I'm on the long term registry study GS-US-248-0122 and my baseline at EOT+26 was still undetectable. Will be checked every 6 mos thru summer 2016.

And I'm thinkin' that 2014 will indeed be the year of mass SVR.