Any advice as to what to take with me for the first TX? I have about 14 hours to go. The nurse suggested tyenol
I'll try to keep my journal updated as much as possible and I am making it public. I've been reading Epi's to see how she did it. Thanks and I'm sure you all will be seeing a lot from me in the future.
Epiphiny you MADE it that is AWESOME!!!
Mine was double blind also however I could definately tell there was 'another' drug in the mix and there were a few specific responses that I feel confident in attributing to the study drug. Of course, I don't know for sure whether these were due to the fillers or other compounds used in the tablets.
I understand your apprehension, it's a big deal starting tx and an even bigger deal when you are not sure if you are going to get the study drug but I think it will become apparent very early on. Enrolling on the study was the best thing I have done in my life, after marryingin my husband that is!
The best thing you can do is to make friends with the study team, do everything they tell you, take the meds bang on time twice a day and ask for a hard copy of all your blood results. They probably won't give you the VL results until after the study drug period is over but all your other results can be clues.
I managed to stay working through the whole thing, I had to have a few days off over the 48 week period and had to take lighter duties but I made it through.
Again, any questions you have please let me know. I really want to use my experience to help others so you can count me on your support team!
Talk soon!
Epi :)
I’m not familiar with the trial drug, but wanted to wish you luck Let us know how things go for you, Tommy--
Bill
Thanks Writeitdown... Epiphiny responded to this post.
Thanks Epiphiny. I'm doing a double blind study so I wont know if I am even getting the actual PI or not. I was hoping to share some of my symtoms so that someone tell me whether it sounded like I was getting the good stuff. Tomorrow is the first day and I am not looking forward to it. I am going to try and work through the whole ordeal if it is not too bad. I really appreciate your response and I will be contacting you more with what to do to try and make things as peaceful as possible.
Thanks
Teetom
Hi! Yes, this is the trial I was on. And yes, I made it to SVR October last year. I was a previous non-responder to SOC so as far as I'm concerned this is a bit of a miracle drug. As I was tx experienced I was able to tell the difference between SOC sides and R7128 sides (of which there were hardly any and definately not debilitating!).
Please get in touch with me if you have any questions or need some support along the way. I know it's not the same as someone who is on the trial at the same time but I reckon I will be able to help you with a few things.
I really do think you have a great chance to slay the dragon with R7128 in your arsenal!
I'd be very interested to hear your progress, and what dosing regimes you are on etc.
Keep in touch, all the best!
Epi :)
Hi Teetom,
Two members on here that I know of attained SVR in trials of this drug, RO5024048 (aka R7128): Epiphiny and Dragonslayer45. I'm sure a search on here will bring up their posts.
It looks like great stuff. I think you made a good decision getting in on this trial, and I wish you great luck, light sides, and SVR!