Cyclosporine side effects

[BobbyJD]

Hi all,

My sister was placed back on Cyclosporine alone in August 2013. So far her counts have been doing well. Platelets over 100, neutrophil over 1 and WBC and RBC are sufficient. She was on CsA for a year in 2010-2011 after a round of ATG, however about 4 weeks ago she started experiencing migraines, nausea and some vomiting. It would come on only once a week (usually every friday) and symptoms would last for 24 hours at most. We are unsure if the nausea/vomiting is from the Migraine or the pills or something else. Migraines do tend to run in the family, I for one get them 2-3 times a month and they usually cause nausea for me, however my sister has never had an issue with them and never had side effects from the cyclo in the past. We spoke with our AA doctor and he wants to stop the cyclosporine cold turkey and see what happens.

Has anyone experienced similar side effects from being on Cyclosporine? Any thoughts from stopping Cyclo without a slow taper?

thanks!

[Hopeful]

I don't think there are risks with stopping cyclosporine cold-turkey for her situation. It is not like prednisone. The levels in her blood will just gradually diminish. People do a slow taper with cyclosporine to mitigate the risks of relapse.

[TonyBegg]

BobbyJD, Karin has just had to stop Cyclosporine after a month due to an eGFR (Glomular Filtration Rate as estimated just using blood tests) of 25 (should be > 90) indicating stage 4 kidney failure (stage 5 needs dialysis). But I just read an abstract that said that the renal toxicity is limited in its scope, and reversible. We see a nephrologist on Tuesday so I need to study this. Her side effects have been tingling and numb lips and tongue, dose-dependant nausea, electrolyte imbalances and scary kidney function blood tests like creatinine and GFR. But they have cut hers from 600 mg/day to 300 mg/day to 200mg/day to nothing in perhaps 8 days (luke warm turkey at least!) because they do not understand the kidney thing and are being safe. I am concerned that the whole hATG + CsA regime will fail if she cannot get back on the Cyclosporine, so any intelligence on managing the kidney problems would be most welcome.

[Hopeful]

600 mg/day is a huge dose! Ideally, she should take no more than 5mg per kg of body weight per day.

[TonyBegg]

Thank you Hopeful. Karin is 43.09kg naked and 48.08kg clothed (we just exchanged texts). Don't know which one they used, but comes to between 12mg and 13mg/kg. Looked up a NY hematologist and he starts (2012) on 10mg/kg along with the horse ATG. We were given Neil Young's original hAtG/CsA clinical trial protocol paper (1995 ? maybe earlier) and if I remember rightly (apart from using hydrocortisone instead of prednisone) that was what was administered. So maybe that WAS excessive. The lowest they had her on was 4mg/kg. Sorry to hear you are still struggling with thrombocytopenia. Perhaps eltrombopag might help once it is approved.

[Hopeful]

Hi Tony,

I am the same weight as your wife and was on the same protocol. I think it was from 1992! I was originally on 575 mg/day, and it wiped me out every time I took it. My local hematologist was concerned with hitting the magical trough numbers, but I metabolized the drug so quickly that even on the higher dosages, I couldn't do it.

Luckily, I consulted with another expert who said to ignore the trough, unless I was concerned with toxicity, and just use 5mg/kg/day.

200-250 mg/day was a much saner dosage for me, and it worked. Karin will likely be able to resume the cyclosporine after her kidneys recover. As a side note, I've read different papers that say taking magnesium with cyclosporine helps the kidneys.

More is not better with cyclosporine. Unfortunately, a lot of doctors still follow that old protocol.