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laureenh41
01-31-2006, 11:54 AM
I was diagnosed with Hep C about 6 weeks ago. I am type 1 with a relatively low viral load (approx 800,000) My liver biopsy puts me in between stage 1 & 2 with plenty of inflammation! My doctor wants me to participate in a study group for Viramidine. Does anyone here know anything about Viramidine or has anyone here used it? The only difference I can see between the Viramidine and Ribo is the anemia. Other then that the side effects seem to be the same and the long term effects of the Viramidine are as yet unknown! I’m very confused and I only have until Thursday to decide so, any advice would be greatly appreciated!!!!

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thanbey
01-31-2006, 12:33 PM
I was diagnosed with Hep C about 6 weeks ago. I am type 1 with a relatively low viral load (approx 800,000) My liver biopsy puts me in between stage 1 & 2 with plenty of inflammation! My doctor wants me to participate in a study group for Viramidine. Does anyone here know anything about Viramidine or has anyone here used it? The only difference I can see between the Viramidine and Ribo is the anemia. Other then that the side effects seem to be the same and the long term effects of the Viramidine are as yet unknown! I’m very confused and I only have until Thursday to decide so, any advice would be greatly appreciated!!!!


Do not be pressured into participating in a clinical trial. I am unaware of deadlines for participation so my advice is to pass on this UNLESS you have read through all the documents and gotten a second opinion from a provider who is not financially associated with the trial as this provider may be (check this out thoroughly) If your provider is an investigator (or being paid for referrals to the study) there may be a conflict oof interest here. (Ask whether his name is on the study) You will be asked to sign consent forms making this clear to you. READ THEM carefully and ask questions from someone not associated with the trial.

I have no opinion on virimidine or whether you should treat at all or not, so do not read that into this advice. I do have concerns when a provider pressures a patient into making a quick decision so soon after diagnosis. There is no reason for that (medically speaking) so take your time, do your homework and make the decision that is right for YOU. In a study, there is a protocol that every patients must follow. You will not have benefit of individual tailoring to your personal needs. You may not get medications for side effects or lowered dosing if necessary. And, you might be eliminated from the study if you do not meet the response markers so that your stats don't mess with the study results (especially if this is a study being paid for by a pharma) Have a fallback plan in place with your provider should this occur.

There are numerous threads here on whether or not to treat if this is a question you are grappling with.

I hope this helps,

thanbey

laureenh41
01-31-2006, 01:00 PM
Thanks Thanbey, This is not about money or insurance. I have many other illnessess and my doctor thinks the Viramidine might be better for my personal needs. But as you said "In a study, there is a protocol that every patients must follow. You will not have benefit of individual tailoring to your personal needs." I never thought of this!!! So, again thank you very much.

thanbey
01-31-2006, 01:20 PM
Thanks Thanbey, This is not about money or insurance. I have many other illnessess and my doctor thinks the Viramidine might be better for my personal needs. But as you said "In a study, there is a protocol that every patients must follow. You will not have benefit of individual tailoring to your personal needs." I never thought of this!!! So, again thank you very much.


If viridimine proves to be what is hoped, there is plenty of time for you to have the benefit of it. If you have other conditions, I would be concerned about how interferon would affect them as well.

best wishes,

thanbey





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