|
Hi Grifmat,
Don't be afraid of setting up an appointment for a third opinion. You are fairly close to NIH, and they are one of the best for rare conditions like this.
Gengraf is fine. That's the brand that I took. The level of cyclosporine in her system looks like a bell curve that peaks 1-2 hours after taking it. At about 10-12 hours later, it will be at its lowest level, or trough. This trough is a useful measurement to determine if your mom is at toxic levels. Some doctors also use it to determine a target level, but this doesn't work for people who metabolize the drug very quickly.
I would seriously question the dosage that your mom is taking now with the Yale team - don't wait for an appointment. Cyclosporine is a powerful drug that can cause irreversible kidney damage. It seems like her dosage was based on her weight in pounds and not kilograms! (700mg/5=140 lbs)
Be sure to ask the doctors why they don't think it is AA and why they don't think it is ITP nor CLL and why they think it is autoimmune. This information can be very revealing.
Good luck! Your mom is lucky to have you as her advocate!
__________________
55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
|