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Avatar universal

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.  
34 Responses
Avatar universal
I for one would be really happy to find something like this! It would be a huge support, in helping me decide what treatment to go on! I hope to get in a clinical (all oral) trial and learning about what's working and what's not would give me a whole lot more confidence in my decision making. I would ask that anyone that posts on a site like this would stick to the facts (no personal stuff) because that's where the post gets sidetracked. It would be strictly for an exchange of information pertaining to the trials and research.
Avatar universal
I support this idea for a Hepatitis C/trial research discussions in a group/forum format.  There are many of us on the Hepatitis C message boards who are going through clinical trials, or who have been through them in the past and I think that kind of a group would be helpful.  It may also free up the regular Hepatitis C message board for the other people who are on FDA approved Hepatitis C medications.
Avatar universal
Yes.  The "approved for investigational use only" is a whole different minefield.  I would really like to hear also from people who have gone through it before.  Everybody goes ape about UND with these trials and then later find out that things are not as wonderful as they thought.  I for one thought I would have no side effects at all because I didnt have any the first month but geez I am getting tired.  I also like to hear about what "my" drugs (they're only mine as long as they continue to work for me) are doing in other trials and what is the company doing etc.  I guess I also see it as support through information dissemination and sometimes the truth will be hard.  
1652596 tn?1342015226
i definitely support the idea for hepc clinical trial research discussions.  i would like to hear from others involved with studies such as i'm in.  thanks for asking.  i like the idea alot.  best wishes...belle
1652596 tn?1342015226
oh btw, how are you doing these days?  i hope you're doing better.  belle
Avatar universal
I'm good.  But I am tired.  I have an idea that there can be no misses with my drugs so I have this ritual when I get up.  I sit at the computer and check the forum and then watch the time change so I take my breakfast and my drugs right on the dot.  I am in good shape.  But I had to give up my meds for reflux to be in the study and I get heartburn a lot.  Otherwise pretty fine.  How about you?  You are SVR right?  What was your drug of choice Belle LOL?
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