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Old Sun May 27, 2012, 05:50 AM
glitterandlace glitterandlace is offline
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Join Date: Oct 2011
Location: central, CA
Posts: 49
Hi Thank you so much for answering. I was originally diagnosed in 2007. I was on 600 mg a day for like 3 months before they lowered it. I wish I would have known then, what I know now. Like when they said not to eat raw fruits and Veggies. That was the time in my life where I should have been eating the most raw fruits and Veggies. I wish I would have researched the doses and educated myself a bit better. I strongly advise patients of AA to get 2nd and 3rd opinions and to education themselves on those dosages and side effects of all the possible medications they can choose from. I am glad I wasn't the only one who was MEGA dosed. It brings some comfort but still doesn't take away the fact that it was done me. It traumatized me so much, that I am refusing the treatment this time around when I relapsed. =-( Thank you for sharing your information with me.

Quote:
Originally Posted by Hopeful View Post
Hi glitterandlace,

How long were you taking 600 mg/day?

The old standard protocol from NIH in the 1990's recommended 12mg/kg/day of cyclosporine for 6 months. For someone your weight, that would work out to 600 mg/day. The thinking back then was that more-is-better.

Some of the newer protocols recommend a maximum of 5 mg/kg/day, which is about 250 mg/day for you. The thinking now is that a lower dosage provides similar benefits with less toxicity. The newer protocols also don't set an arbitrary time for stopping the drug.

When I received ATG, my doctor was following the old protocol. I was 105 lbs and was taking 575 mg/day. I did this for a month.

I consulted with an AA expert, and he told me about the newer studies and said to lower my dosage to 5 mg/kg/day. He said to not even bother looking at my trough at this lower dosage. I metabolize cyclosporine quickly, so trough measurements aren't beneficial. My tolerance of the drug greatly improved at this lower dosage.

I really think you need to be your own health advocate with these diseases. Pay attention to how you feel, research side effects that you may be experiencing, and communicate your concerns strongly to an expert.
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