why don't we hear from more trial people

[streamline569]

I would like to hear the experience from people without cirrhosis and diffenent degrees of liver damage and how they did in trials with 24 and 48 weeks. We never hear from this group of people. It would be nice to know who reach SVR and who didn't without just reading trial information that is so limited as to the individual personal situation and end result. They are out there, how do you find them?

[blondie717]

oops, My degree of liver damage was stage 0 (meaning no scarring or serousis (spelling) grade 2 (meaning some inflamation) and eighter my ast or alt ( I get them confused) went up around wk 40 and 44. enough for my study cordinator to ask if I were drinking.??? humm....maybe it is the ibuprophen? or the study drug? still it was not even up to 70 which ever one it was be it alt or ast??
     It will be interesting to find out if I get any liver damage from the tx or study drug in the furture. any scaring???  Im just not sure of anything anymore.  They tell ya this and then they tell ya that.  Or  They learn this and then they learn that.

[blondie717]

     Okie Dokie ;-)
     Hello, I just finished a bms791325 w Soc..It is a 2a trial, there are 36 people in it, it is only being done in the USA.  2/3 got study drug in eighter 75mg 2 x's daily or 150mg 2x's daily.  The rest had soc.  I had no side effects, no flu symptoms, no headaches, no nutting. I felt as though I was getting placebo riba, placebo interferion and placebo study drug ( Im blessed, I guess? ;-)!   It is a double blinde trial. I did not get results of viral load untill wk 12 along with my doctor.  It was und @ wk 12 and has been und up to wk 44. I have been done with meds for 3 weeks??? Me tinks???
      I missed my wk 48 blood work due to new job , broken down jalopy and other events like that. But I'll be getting back there real soon.
     I lost 1/5? of my bodyweight durring this trial, but some I wanted to loose and the weather was really hot, and I just got too busy with life this summer to worry or want to eat much this summer.  But round wk 44 or 40 I did notice processed box food like tuna helper tasted like a sick salt. But choclate and brownies and choclate anything is still yummy ;-)...
     I was the first one in my trial to start. they say, they also say they were the first to be accepted and start. I already had fresh biopsy and labs so they were ready for me.
     I tried hard to find someone , anyone who was in the same trial as I. Sometimes I think maybe Im the only on in, because I have never found anyone on any forum.
     Are you in a trial? or thinking of going into one?  I have found many people on this forum and others in trials. some forums have sections just for trials. like hep central forums??
   hugs Ginger

[orphanedhawk]

I think a lot of people just move on with their lives.
Andiamo who did tx 6 times before reaching SVR in trial used to post all the time.

My friend who'll be starting the all oral trial, doesn't go on forums and rarely is online for much of anything.

In my opinion, most people who are here either want help of one kind or another be it support or information or they want to share.

[rockymoe]

i was in the telaprevir trial the first time i was in the Placebo group , but I had the option of doing the rollover. i was UND at 4 weeks but developed the worse rash my clinic saw. it started out looking like bumpy rash and turned into a mottled looking welt. I have scars from it. I broke thru at week 6 but even if I hadn't I would have been pulled for the rash. i spent the next month on a prenisone taper.

[lynda607]

Click on forums at the top and you'll see user groups or on the Health Forums page you'll see groups next to pets. :)   Either access will allow you to start your own group.  Not highly visible but it's there if people want to utilize it.  

It doesn't make sense nor is it fair to only appease the hepc community with a trial forum and not all other communities who are going through life altering situations and may benefit from other participants trial experiences or cutting edge trial info.

[nygirl7]

The trial groups going on are very limited there is much more interest in general hcv treatment not that the tela boce trials are over. During those trials most were blinded and also told not to talk about them in chat rooms or on a forum so they did not because they didn't want to get bounced from their trial.

Autoimmune hepatitis is a different disease than hepC, so the people on that forum aren't intrested in hcv and vice versa really since they dont have the virus at all.