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Hepatitis Trials and Research Forum
I wonder if it is possible to consider starting a community for Hepatitis C trial/research discussions. I would think it could operate for a few years at least while the subject is heated up as it is now. With the recent approval of new drugs on the market, more and more people being diagnosed, a multitude of trials to select from for those who opt out of traditional care with its severe side effects, and the need to share information about treatment experiences with drugs approved for investigational use only, etc, etc, it could really fill a gap in helping people access care. It appears that there are a few of us who are interested. I will ask that they express their opinion here.
Yes, I would be in favor of curious lady's excellent suggestion.
Hi everyone -
I will pass this suggestion on, but are these trials only applicable to hep C, or will they apply to other viral heps, too?
Thanks!
Emily
I will pass this suggestion on, but are these trials only applicable to hep C, or will they apply to other viral heps, too?
Thanks!
Emily
Having just finished up in a trial about five weeks ago, I would have really appreciated having a place to go to discuss what I was going through. Now that I am finished, I would be happy to share my experiences with others that are considering or currently in a trial.
It would seem that a forum for hepatitis trials/research is one of those excellent ideas that makes one slap their forehead and say " why didn't I think of this?" It's an obvious need and I would certainly appreciate seeing this as an offering here on MedHelp very soon.
I really like this idea, Curiouslady1, and am glad that you've brought this up.
I really like this idea, Curiouslady1, and am glad that you've brought this up.
Hi, I was very happy to be contacted about a study for treatment naive with protease inhibitors and polymerase inhibitors & SOC. started 1/25/2011 ended July
Because I had very little damage to my liver ( I think I got this 30 yrs ago, but dont know for sure ) and no insurance, and a complicated work situation I decided to wait to treat. I asked our local research facility if I could register and be notified of a study that fit my situation and 2 yrs. later they called me.
The HCV center here started and continues as an HIV treatment and study center, so they were no stranger to treatments.
I lucked out, I entered the study and I got all the drugs. I was und at week one or two and didn't get serious sides until my 12th or 13th week. I signed up for the sub study and I'm glad I did. you really get to know your coordinators and they you.
I have a friend in the same study who didn't get the study drugs but did well enough that they kept her on SOC for 48 weeks. She is laboring through it and counting the days.
I stopped treatment at 24 weeks and am grateful for that I started showing skin problems around that time, herpes around my lip and nose, and a lot of peeling in those areas, as well as some itchy rashes @ my injection sites. These were all manageable, but I'm happy to be without them.
My sides were nausea, low hgb, so I was very weak and tired.
I found everything to be manageable and part of that management was I took time off from work ( got layed off ) for a couple of months right at the end and that helped.
I had a lot of help with the decision to treat because of the information I got from the study center, and as I started treating I learned more and more. The one thing that cinched the deal was that I could quit the study anytime without any trouble. It was nice to know that I could make that decision. Of course once you're into it you want to finish.
I reduced my Riba toward the end around 18 weeks I think and it may have helped a little.
I really liked the monitoring every week, during the treatment and getting to know all the providers.
I like Gilead as a company and they were really thorough.
I received all my labs as they came in and could get copies of them. Gilead makes sure all your questions are answered, they did not provide rescue drugs, but modified the treatment in my case low hgb.
I missed a couple shots due to injection failure, and I missed taking a dose of the PI's , "things "worked out, so far" I'm still hanging in while I get my monthly labs, it will be my 4th month post treatment Nov. 11.
we shall see................. but we all tried our best. that's how I see it.
I hope my story helps,
I of course wish everyone good results,
Mary
Because I had very little damage to my liver ( I think I got this 30 yrs ago, but dont know for sure ) and no insurance, and a complicated work situation I decided to wait to treat. I asked our local research facility if I could register and be notified of a study that fit my situation and 2 yrs. later they called me.
The HCV center here started and continues as an HIV treatment and study center, so they were no stranger to treatments.
I lucked out, I entered the study and I got all the drugs. I was und at week one or two and didn't get serious sides until my 12th or 13th week. I signed up for the sub study and I'm glad I did. you really get to know your coordinators and they you.
I have a friend in the same study who didn't get the study drugs but did well enough that they kept her on SOC for 48 weeks. She is laboring through it and counting the days.
I stopped treatment at 24 weeks and am grateful for that I started showing skin problems around that time, herpes around my lip and nose, and a lot of peeling in those areas, as well as some itchy rashes @ my injection sites. These were all manageable, but I'm happy to be without them.
My sides were nausea, low hgb, so I was very weak and tired.
I found everything to be manageable and part of that management was I took time off from work ( got layed off ) for a couple of months right at the end and that helped.
I had a lot of help with the decision to treat because of the information I got from the study center, and as I started treating I learned more and more. The one thing that cinched the deal was that I could quit the study anytime without any trouble. It was nice to know that I could make that decision. Of course once you're into it you want to finish.
I reduced my Riba toward the end around 18 weeks I think and it may have helped a little.
I really liked the monitoring every week, during the treatment and getting to know all the providers.
I like Gilead as a company and they were really thorough.
I received all my labs as they came in and could get copies of them. Gilead makes sure all your questions are answered, they did not provide rescue drugs, but modified the treatment in my case low hgb.
I missed a couple shots due to injection failure, and I missed taking a dose of the PI's , "things "worked out, so far" I'm still hanging in while I get my monthly labs, it will be my 4th month post treatment Nov. 11.
we shall see................. but we all tried our best. that's how I see it.
I hope my story helps,
I of course wish everyone good results,
Mary
Oh and I wanted to point out to the mods that there are a number of forums where people post once a month or less. I think this forum would be quite active. If things settle down in a few years and the miracle drug is discovered (LOL) you could always disband it.
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