Thanks, Anne. I don't weigh anywhere near 200 pounds and I'm on 250 mg. Time to ask more re: dosing. Even if I'm coming off this drug soon, I would like to be on the minimal amount necessary to stay well.
Thanks, Anne. I don't weigh anywhere near 200 pounds and I'm on 250 mg. Time to ask more re: dosing. Even if I'm coming off this drug soon, I would like to be on the minimal amount necessary to stay well.
Well, I hope my info is correct, but I think it is. Too bad we have to struggle with docs on these things, and check up on them all the time... I agree that if you are considerably less than 200lbs, 250mg. of CTX is too much, not only because of the inherent long term risks, but because of the side effects. Good luck convincing your doc, and with your continued recovery.
Anne, dx'ed April 2011
Here is a link to a nephrology page which confirms the CTX dosage by weight that I gave. You have to scroll down to Induction Therapy, and it is in the first paragraph there. http://jasn.asnjournals.org/content/13/7/1953.full You might want to find other resources to back you up. Or your doc might want to confer with one of the experts listed here: VF Medical Consultants . Good luck!
Last edited by annekat; 07-31-2015 at 06:33 AM. Reason: forgot to include link!
Anne, dx'ed April 2011
Ok, I made a mistake. I double checked my prescription--I'm only on 100mg a day. Phew!!! I have no idea where I got 250 from. I'll blame the prednisone and its effects on my brain. Still, time to get off this drug.
Forgot to include a link above. It's there now. I do that all the time!
Anne, dx'ed April 2011
Oh, well that's a lot better! You might make sure it's even enough, though as I said, I did well on a bit less than the formula called for. Don't worry too much if you've only been on it four months. Just try not to go longer than 6. Different literature says different things. But true, the lower the effective dose and the less time, the better. Yes, the pred, the disease itself, and the CTX all mess with our brains.
Anne, dx'ed April 2011
At 175lbs I did 150mg of cytoxin for a year and a half. At the time I had so many issues there was no way of knowing what issue came from where. My rheumatologist started off claiming the cytoxin would be short lived, maybe a couple months. I didn't respond well and stayed on it for so long out of fear of nothing else working at all. I switched to 150mg azathioprine in desperation due to cytoxin side effects. It was like suddenly coming out of a very long tunnel into the light of day. I don't know what is best for you, but holy cow... for me the change was a major event with no unfortunate result.
Also, you can safetly blame prednisone for anything, even earthquakes. I did 80mg for nearly a year. Every time the dose was reduced I was in the hospital ER within days. Keep your head clear, be involved, take care.
Good luck,
Gary
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