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

[Renee543]

I hope that all of us that went through this journey together are having a Happy New Year. I know I will never forget 2013. The year my life changed for the better. I decided to go for the year follow up because why not? That way I can stay on top of my blood work and if anything else is wrong it would show up. I'm not so much worrying about the 1% chance of return.
The nurse told me it is offered as a way to just have follow up results on people who cleared. She said they especially want to monitor people who had cirrhotic liver. I was a stage 4 fibrosis but that is close enough for me.
Anyway so far, so good. I go next week for my first yearly follow up exam.
Would like to hear from some of the people who cleared about the time I did, I think about you guys often.
Very happy new year to everyone.

[MagTX]

Hi lost, very happy to hear your great news! Also, thank you for coming back to let us know your turn of events and for wanting to help others on the forum, that's so kind. :)
So basically what I'm reading is that you only have the antibodies present and no viral load for HCV, wonderful! You were one of the lucky ones, only about 20% are able to fight off the virus after exposure and never have any problems except that your antibodies will always remain positive.  There is no problem at all with having pos. antibodies, as long as your second test showed no viral load, the PCR by RNA test...  I'm confused as to why you will get retested in one year, there's no need since you already have these results and nothing will change. Did someone in the health care community ask you to repeat this in one year? If so, I would question this advise. Hep C is not like Hep B, and there's nothing inactive about the hep c virus, you either have a viral load or you don't, and your own body fought it off naturally and it can't return unless someone infects with hep c again in the future,it's  gone and dead. You don't have any thing to worry about, and go ahead with testing your family just for a piece of mind knowing they are ok, but hep c is very hard to transmit unlike the hep b virus which is easier to contract. Also, if you and your family have never been exposed to hep b it is wise to get immunized for it. There is no immunization for hep c.
I'm glad we can all make a difference here for you and that you followed through with the advise, it's great to hear your story, and thanks again for posting! Happy New Year!
Mag

[lostdcd]

Hello MagTX,

I hope all is well and I wanted to start by wishing you a Happy New Year.
        First off let me start by apologizing for the delay in my response. The months have been busy and it took awhile for the results to make their way to me. The downside to this was, that my family physician wasn't the one who relayed the information to me, even though the information came in,  Dr.Cold didn't contact me. I,  just today, found out that I was exposed to Hepatitis C (the virus is inactive within me). Which is wonderful news!
The journey was not an easy one, the funny thing about how all this came to be was that the Doctor that tested me initially (let's call him Dr.Awesome) was the one that asked for my results, and not Dr.Cold who is my family Doctor (which was shocking to me, and I felt very offended for his lack of interest in his patient).
With all the good that came to be, I am not one to complain or even let it get to me. I feel very fortunate and to be honest I owe a lot of my strength to you MagTX. You gave me the courage to speak out and ask questions and also the willpower to further see into my case. I will be tested again in one year.
Today was the day I told my family and since I had good news, it was of course well received. I felt that it wasn't good to keep the information away from them, but better to not have them worry until I found the final result myself.
With the scare, my family is in line to get tested as well.
We will see the results.

Thank You,
Lost

P.S
I hope I can do for someone on this blog what you have done for me, this way I will remain as active as I possibly can be on the forum.

[pamigo0856]

just read some info for us incivek experienced 1a "ers" from giliad's  q3  and q&a session........

http://seekingalpha.com/article/1785222-gilead-sciences-ceo-discusses-q3-2013-results-earnings-call-transcript?part=single

http://seekingalpha.com/currents/search?query=ledipasvir&source=email_rt_mc_body&app=n

[gerard11]

Renee going into these trials we had only hope and prayers. Now we have a Hepititas C free body, with a tiny chance that it might come back. I think we are some of the most four ate people who walk the earth!!!! Congrats to you! When Hector and I answerd this thread ( I think we were one and two) if memory serves me, I think we told you to run and get into the trial!!!! Who mould have ever thought ths thread would have continued this long. I have seen nothing but great information, kindness, compassion and a general sense of we will all get through this somehow ith everybody's adding their 2cents!!!!
I can only hope that Hector health improves quickly. He was such a tremendous help to so many including me. As I have said many times I really believed he was instrumental in getting me on the Gilead trial that has basically saved my life!!!! Hector if you read this my and many of us thoughts and prayers are with you.
Rene and all others who have achieved SVR good luck lead healthily and productive life's. Peace to all!
Jerry

[Renee543]

Going to share some of the letter my trial doctor sent to my Gastro with a cy to me. It basically says that the HCV RNA was undetectable from week 6 to the end of treatment. A sustained viral response (SVR) with no HCV RNA detected at 24 weeks after discontinuation of meds. With an SVR there is 1% chance of return of the virus. The fibrotest on 1/4/13 indicated a likelihood of stage 4 fibrosis. My most recent liver biopsy was in 2010 with stage 2 fibrosis. These fibrotic changes may improve now that there is no HCV attacking the liver. Further monitoring of my liver status can be done annually for a couple of years by testing the viral count not the HCV antibody as it will usually remain positive for life. In addition, I should receive hepatocellular carcinoma screening every 6 months with a liver scan and AFP tumor marker blood test. Also, I had the option to enroll in a follow up study that will monitor the live serum tests and HCV RNA for 3 years. (I did enroll).
So, I have a 1% chance of relapsing....hopefully my liver will repair damage done (I am taking a lot of supplements to help it) and just keep an eye on everything yearly...with the tumor marker tests added. Remember the antibody will always be with us.
So this is pretty much the end of the chapter, I wanted to share with all of those coming up behind me, so you can get an idea of what to expect.
Going to make the most of my renewed life...the glass is half full.