Hep C Discussion Forum

They just released another one for GT 3 .  Maybe we will get lucky and here something today.

Great job Sofi.

Hello all,

I recently posted that the nurse would email me if I was invited back for January which would mean I'm SVR 12. Just got the email, I am SVR 12!!!! Oh happy day! Good luck to everyone still waiting!!!!

For the one who asked:

8 weeks sofosbuvir/ledipasvir in one pill plus ribavirin

initial viral load 9 million  and now SVR 12!

Hi Matt, some of us were on a 8 week study with/without Ribivarin and the others were on a 12 week without the Ribavarin in the phase lll study.

Congrats Socal & Sofi and the rest of you Gilead Ion-3 trials members

You guys rock, to have great results in such a short periods is a real change in the world of HCV future treatment options.

I was looking back at your Ion-3 members group and can remember who took what combinations and for how long?

Can anyone of you breakout the group Ion3 trial members by combos and weeks.

Matt

Living proof that 8 weeks will work on some people!! :)

Excellent SVR12 result, Socal, congrats to you!  Great news, looks good to me! 

Sofi my nurse gave me an appt for min Jan as I said at time of my draw, she did say something about they would than ask me to participate in another study perhaps and that it would be at another location. She wasnt real clear about that she more just mentioned it. She also said that they havent had anyone relapse yet as well. I have heard 12 weeks considered cured and others have said 6 months. It will be my last visit in Jan there I think she told me as well.

Socal! That is amazing! SVR12 is considered cured! I had my 12 week post EOT blood draw this past Thursday. My nurse said if still UND, the lab would send her a letter telling her to invite me back for a 24 week draw. She said she would only call if they wanted me back in immediately which would be bad news. I sent her an email today asking if she would email me if I am invited back for 24 weeks since a phone call would make me panic. Best of luck to the rest of us. I will post when I know.

Sofi

Hey All. So last week I went to both the trial study doctor and also my own private doctor for I guess it is a 12 week blood draw now at this point. Trial study drew blood and gave me an appt of mid Jan.

As far as my own doctor I did get a call yesterday from him and he told me that the blood results came back and I tested negative for HepC virus. So pretty excited with the good news and thought I would pass it along. 12 week eot and looks like I have reached svr12.

Wish you all the best as well things are looking very good for us with this medication.

That's going to be a great holiday gift for all of you! I'm keeping my fingers crossed for everyone!! Good luck everybody! 

Hi Everyone,

I want to wish all of you good luck on your 12 week EOT which is probably coming up for a few of us like Sofie, Socal, and Rose. My 12 week EOT is late next week and I am feeling nervous about it too. I was told by my doctor that if I am still UND at 12 weeks then they consider that a cure.

I had my own VL test done at 4 and 9 weeks after EOT and both were UND.

Has anyone else had their own VL test done? 

Sofie, I am so glad to hear you are feeling much better. 

Socal, I hope you are improving too.

Rose, best of luck on your 12 week test.

RH, Misfis, Lil eddie, Karen and all the rest, I hope you all have UND results on your upcoming 12 week test.

Hi all,

I go back on the 24th for my 12 week post-EOT blood draw.  My legs still have tenderness, especially around the joints, but it is not at all like it was. I moved last week. I spent days packing and lifting heavy things. This past Monday, I walked all over campus putting up fliers for an event then had two three hour classes back to back then came home and unpacked around six boxes of books and filled up my bookshelves.  I say all this because I couldn't have done that two weeks ago and definitely not two months ago. I started graduate school at the end of August and was like a zombie.  I thought I was going to have to drop out because of my health but I somehow pushed through. Back then, I couldn't even go out at night because I had zero energy and was afraid to drive-- this was post EOT.  But finally, I am better. Much better.

I am still hyper aware of how I feel, especially on long days but I tell myself that I didn't fall down and pass out while on the meds so I definitely won't now that I am off. Or if my left shoulder aches (probably from moving) I have to tell myself that liver pain is in the right shoulder and to stop worrying. But those days are less and less now.  Oh, so yeah my legs may have tenderness at times but all the growths and bumps and bruises are gone. The inactivity due to fatigue and pain made me gain weight but I have been walking and I am going to start trying to run again soon.

I am mentally better now, too. The meds kicked my butt and seemed to really kick mine harder than most and I was really worried that I would never be ok again. But now, I have hope and most days I feel like me again.

I still have resentments around the drugs and how hard they took me down. My best friend said that I wasn't me all those weeks and asked me how I was coping now. I don't know. I feel like I suffered more than was due and I am not sure how let go of that. I'm a writer so I am trying to use that to heal emotionally. Maybe an SVR 24 will help.

Good luck all.

Hi all,  good to hear the good news from everyone so far.  I had my four week eot blood draw on Sept 18th.  Haven't heard anything from anyone yet.  My 12 week will be on November 13th.   If I remember correctly, I'm then supposed to come down the following week for results, but my memory maybe a little off on that one.  Wish us all good luck!

That is great news. They scheduled my 12 week appointment at my 4 week blood draw though. I guess it depends on your study place. At any rate we have two more hurdles to jump.

I have been feeling a little drained in the afternoons and am starting to get super sensitive to any funny feelings. This part is worse than the actual treatment for me. I hope it's all mental but this started right after my 4 week blood draw.

I have an appointment coming up with my private Dr. in a few weeks. It will be SVR 10 or you know what.

Take Care  

Clinic called to schedule week 12 EOT. I guess that means my week 4 EOT results were UD. Praying and waiting!

Good luck to all!!

Great to hear this, Ckncali, congratulations to you!  So good to hear how well you`re doing now, what a difference a few weeks make!  

Wishing you all the best of luck with your 12 week vl test at the end of the month...although it sounds very much like you`ve got this done and dusted! 

Hoping for successful outcomes for you all, it`s great to see such a lovely supportive group!

Thank you Matt, Tig and Rose for the good wishes. 

Good luck to you Rose on your 12 week draw in November and congrats on the good news on your week 4. 

Socal and Sofi, That  RIBA can keep working on you for a while. My doc told me to give it six months to a year to get over the meds. I think all the hiking I did really helped me to get it out of my system and start feeling good. I hope both of you are feeling really good soon.

RH, Reg and lil Eddie, best of luck to all you guys on your upcoming milestones.

Ckncali

Great news about your test and all the health issues resolving so quickly

Matt

Hi Everyone,

I wanted to check in and report how I am doing. At almost 4 weeks after EOT I had a VL test done from my hep dr and was still UND. I also had my 4 week after EOT done and will have my 12 week after EOT done late October with the trial folks.

I took a three week RV trip with my husband to the Sierras and was able to bike ride and hike. I was breathing pretty hard at the high altitude but so was my husband and we were up as high as 10,000 feet and we live at sea level. I am now able to wear my contacts again so my eyes are getting better.  I was unable to wear my contacts during the entire 8 week trial and also for about six weeks after the trial. 

I now feel much better than before starting the trial and am noticing that past health issues like insomnia, night sweats, headaches, fatigue, lethargy, coldness, heart palpitations, and more are no longer happening to me. These are all health issues I had prior to doing the trial and I am now no longer experiencing them. 

I feel very confident that the virus is gone.

I wish you all the best.

Hey Sofi... I was reading your post didnt see what i should be looking for if anything that pertained to us on our study. What did you see in that?

So a little update on myself. I am still having this itchy scalp thing going on and am still getting these scabby type thing on scalp with alot of hair loss as well. So i started looking up some info on the Riba and found that it can take up to 6 months to clear from your body and that you can still have adverse effects from it for some time, maybe I will still have some hair left come six months.

Have next appt in about 2 weeks i think as well as another blood draw from my private doctor around the same time which i will get results from within a week from the draw. Will be keeping fingers crossed and a prayer or two as well.

Hope you all are doing better

It's been three weeks since my one month post treatment blood draw. No phone call so that is good. I am better and so are my legs but still not back to normal. I tire easily and still get aches.  But hopefully, eventually, I will be back to normal. It's like the medicine aged me.

Sofi

PS the fact that Gilead is recruiting people with advance liver disease and post transplant for these same drugs leads me to believe that the trials are going well.

http://clinicaltrials.gov/ct2/show/NCT01938430

Hi Do

 They are on Gileads website if you want to listen to them. The only thing that was said pertaining to what I was listening for is that the treatment will be for 8 weeks for certain patients. I was hoping for a little more info than that but this was an investor conference, not a liver conference. They are having the AASLD(liver conference ) the first week of November and that should have all the info we are looking for.

Take  care

I just had my four week post treatment blood draw today - hoping for the best but curious to know where you read about the SVR12 relapse rates.