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amberb Fri Dec 21, 2012 03:10 PM

When to taper Cyclosporine?
This is just a general question about when to start tapering Cyclo. Does anyone know the method or reasoning behind when the tapering starts? Is it based on how good the blood counts are or how consistent they are? Does it have anything to do with how long you've been on it?
I've been on Cyclosporine for 1 1/2 years with the dose usually around 150mg twice daily. My blood counts have been pretty consistent in recent months, not perfect levels, but maintaining. I'm wondering if there's a point in time in which the Dr will say, ok, this is as good as you are going to get, let's taper. Or if they are going to keep at it to get to perfection. My Dr has told me he will never fully take me off of Cyclo, but tapering down is the accepted standard of treatment.
Any input from articles or personal experiences would be great!

Hopeful Fri Dec 21, 2012 04:26 PM

Hi Amber!

As you know, different doctors have different opinions. My AA/MDS expert recommended tapering after my counts had plateaued for 3 solid months. My local doctor wanted me to taper sooner because he has seen the harmful effects of cyclosporine on kidneys.

So, I ended up starting my taper when my platelets were over 100k for 3 solid months, even though they were still slowly trending up. I've been tapering for years now (literally) and am now down to 25 mg/day! Looking back at my platelet charting... about a month after dropping below the therapeutic dosage of cyclosporine (3 mg/kg/day), my platelets stopped their upward trend and have stagnated ever since. However, I am glad that I did the taper, even if my counts aren't perfect. Over time, despite tapering, the cyclosporine has caused me some mineral deficiencies and reduced kidney functionality.

marmab Sun Dec 23, 2012 04:20 PM

Hi Amber,

This topic interests me, too, because my counts only began to improve when my cyclosporine dosage was reduced. In October my MD and NP took another look at a blood smear, and determined (somehow) that the CSA was a problem. I think that getting off prednisone also helped my counts recover. My MDS journey since April is a more lengthy and complicated story, and I have posted a longer version with more details in a different thread (TASHMAC's hemolysis) today.

Be well!


Lori Patrick Mon Dec 24, 2012 12:13 AM

Amberb- I am on the same dose you are taking. I will be 2 years post transplant in 3 weeks. My blood has been at the normal level for about 1-1/2 year now. I have not asked about weaning off of anything yet. I have gvh of the skin and eyes so I suppose they will want that to burn out first. Peaceful thoughts are sent to you.

Lisa V Tue Dec 25, 2012 03:25 PM

Amber, you might want to ask your doctor what is the reasoning behind his/her treatment decision. This is an area that seems to be in a state of flux right now. A few years ago it was standard protocol to start the taper at 6 months post ATG, and to do the full taper over the course of just a few months. I can recall a clinical trial where they even tried a "cold turkey" approach with some of the participants. I'm guessing there must have been too many relapses with a quick taper, so nowadays doctors seem to be favoring a longer, slower approach. There also seems to be growing evidence that a sizable percentage of patients (maybe 30%?) will remain dependant on cyclo indefinitely.

Of course this can cause other problems, particularly with kidney function and blood pressure, not to mention increased vulnerability to a variety of adventitious illnesses, including cancers. The trick is to juggle all these factors and tinker with the dosage as needed, hopefully getting down to a level that can still suppress the auto-immune attack and allow your counts to recover, without sending your blood pressure through the roof or your kidneys into failure. If you haven't been having any side effects so far, that may be why your doctor hasn't started a taper, but if it were me, I'd have that conversation.

It's hard to know what will work best for each person, but we've learned by trial and error what doesn't work for my husband. His counts weren't anywhere near full recovery when they started the taper, but he had been transfusion-independant for several months and seemed to be at a plateau. He'd had to drastically lower his dosage early on in the game (from 900mg to 500 to 200) because of toxic blood CSA and creatinine levels, but when they did the "real" taper, the doctor cut him from 200mg to 100, then a month later, to nothing. A couple of weeks after that his counts started to nosedive. A second ATG followed, and now we're playing it cautious. He's had to make small adjustments from time to time and add a blood pressure medication, but 7 years after ATG #2 he's still on 150mg/day. His RBCs and Plts are normal now, and we want to keep it that way!

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