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Old Sun Nov 5, 2017, 07:17 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Joe,

Be patient with this disease. It will take more time than you think to for your marrow to return to normal.

I was also a fast metabolizer of cyclosporine. Initially, my doctors were ever increasing my dosage to exceedingly toxic doses to hit that elusive target of 200-400 (your 2-4). When I was on my highest dose (12mg/kg/day), my trough barely got over 100. I consulted with a few experts and we brought my dose back down to 6 mg/kg/day and stopped measuring the trough. 12 mg/kg/day was too high for me, and I saw many side effects. This was just my experience though.

The goal of taking cyclosporine every 12 hours is to maintain an even level in your system. However, cyclosporine does not work this way. It will peak 1-2 hours after you take it and then rapidly decline. I occasionally would get my cyclosporine levels tested outside the trough, just to see what was going on. 1-2 hours after taking my dosage, I would be around 1000! So, although by trough time, you may be below 100, earlier you most certainly are not. Unfortunately, there is not a lot of research in to the dosing of cyclosporine and a lot of the current AA guidelines are based on transplant patients. You may want to check your 2 hour reading just for a sanity check, if you still have doubts.

I think the non-modified version of Cyclosporine works better when taken with fats. I can't remember if there is any difference with the newer formula.

Be sure your doctors are aware of your fasting. ATG/Cyclosporine are suppressing the immune system so that the marrow has a chance to rebuild. I don't think you want to do anything now that would strengthen it! Also, it is very important that you are getting the vital nutrients to support the making of blood. For example, my doctor advised me to add clean red meat to my diet.

Hope this helps! I am not a doctor or in the medical field. I am a long-time user of cyclosporine who did a lot of experimentation with my dosages in the early days.
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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
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