Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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Drug studies

TheresaLF
TheresaLF
Help, please! My rheummy has suggested I take part in a drug study and I absolutely cannot decide whether or not to do it. I was diagnosed in March of this year and have had ups and downs with MTX and prednisone. Have any of you done this before? My appt. is tomorrow and I'm still not decided. Thank you so much for your help, advice, etc. I don't often write on the site but I certainly appreciate reading your entries. It has helped me immensely in dealing with this new and strange disease. Theresa
deleted_user
deleted_user
Without knowing any of the details, it's impossible to say what to expect, but in all the cases I've looked into, the study was for a biologic, and you needed to be taking MTX (Arava was OK in one case), so that if you got the placebo in a double blind test, you'd still have some treatment coverage. One of the reasons you always see MTX with all the trial results. Check to see if you can know if you're getting the drug.

Good luck.
deleted_user
deleted_user
Great response..bc2. .....and I'm lovin' your avatar!
TheresaLF
TheresaLF
bc2,
Thanks so much for your quick reply. My Dr. says I will not know if I'll be on the drug or the placebo. Right now the 5 MTX/week and 4 mg. of predisone is not controlling the pain. All I know about the drug is that it is a (Wyath) biologic similar to the others on the market now. Guess I will know more tomorrow and make my decision. Thanks again!
LynnRivers
LynnRivers
I think I would base my decision on how long the trial is. If you got the placebo and your RA flared, you would not be able to take any other meds. How long could you hold out and continue in the study?

If the study is more than three months then I personally wouldn't do it.
deleted_user
deleted_user
I am losing insurance Nov.1st and I seriously considering going that route. On one end I feel really uncomfortable being a "test-subject", on the other end, I think these kind of studies pave the way for ground-breaking treatments.

I think these studies are definitely worth consideration.
deleted_user
deleted_user
I have been in a long term study for 4 years to determine if the drug is effective and whether I am still eligible for provincial health care plan treatment. It is not a scientific study, so I am not in a placebo group. The University Hospital which does this study thought it was unethical for people to be in a placebo group, and have continued deterioration of the joints. Mthx and prednisone is not a good combination, and if you can get the med for free, and do end up in the treatment group, you can expect great results. I take Kineret, and recently changed from mthx to Sulfasalazine, which is better is some respects, and worse in others. But mthx was destroying my liver. If you have any liver issues at all, it might not be a good idea to do the study, because most of the biologics clear through the liver. Kineret clears through the kidneys, which is why I was put on it.

If you don't have the money, this would be a good way to start seeing if you need to upgrade your treatment regime. If you do, then I would say start one of the more traditional drugs,like Remicade or Enbryl.

Good luck! You probably will be thrilled when you get on a biologic that works. Minimal pain and damage!
TheresaLF
TheresaLF
Angela, Thanks for your quick reply to my dilemma of a drug study or not. As it turned out, I couldn't start in the study anyway last week due to high liver function levels so, it seems, that the MTX could be doing nasty things to my liver. My rheummy took me off MTX for two weeks and I'll have more lab tests then. You gave me excellent and thoughtful advice which I will be discussing with my Dr. Thanks again for the info.