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Old Wed Dec 8, 2021, 10:55 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Matthew42 and mola-tecta,

I'm going to share my personal experience and experiments with cyclosporine in case it is helpful. I am not a medical professional. So this is all anecdotal. I did a lot of research early on because I was having ill effects from my initial high cyclosporine dosage.

Cyclosporine dosing will vary based on the brand (Gengraf, Neoral, SandImmune, etc) and on the weight of the person. The metabolism of cyclosporine will also vary based on the person. I metabolize cyclosporine extremely quickly. So, in the early days, my local doctor was constantly trying to raise my dosage to get my trough rating "in range" (200+). It never happened despite being on an incredibly high dosage and feeling like I was poisoning myself.

Luckily, I consulted with an AA expert who said to forget the trough and dosed me based on my body weight. Papers that I read at the time supported this approach.

I read a paper that showed that cyclosporine levels in the system follow somewhat of a bell curve with the peak 1-2 hours after taking the drug. So, I tried an experiment and got my trough reading 2 hours after taking the drug. My level was over 1500, which freaked out my local doctor. Needless to say, I had a strong case for lowering the dosage to the recommended level for someone of my weight.

So, I would recommend reading the pamphlet for the cyclosporine brand that you are using to learn the recommended dosage, just for a gut check that you are in range. You don't want to be too low, and you don't want to be too high. Of course, always discuss any concerns with your mothers' doctor!

One other thing that I do is take a magnesium supplement with my evening dose. This was a recommendation from the late, great Hawaii Bill. Cyclosporine will deplete your magnesium, which can cause all kinds of issues, including heart arrhythmia. Taking a supplement will help keep your magnesium level in range. It also aids with sleep when taken at night. Have your mothers' magnesium and potassium levels checked every now and then just to make sure that this is not an issue for them.

With regards to bone marrow cellularity, I was told that the marrow is patchy, meaning that it could be 40% in one location and 50% in another on the same day. It takes a long time for the marrow to come back, especially as you age.

With regards to platelets, you should get your mothers' clotting factor checked to make sure that she is not susceptible to a spontaneous brain bleed. Internal bleeds are the biggest risk of allowing platelets to drop below 10-15k.

I hope this was helpful. Again, it is just my own opinion/experience.

Wishing everyone the best!
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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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