Saturday, June 5, 2010

I was in the right place

The Night Tripper

But as the good Dr John said: It must have been the wrong time

My cyclosporin(Cs) level (the immuno-suppressive drug I restarted with rituximab for my low platelets) was 1011 two hours after my AM dose. Normally we want to see the level between 100-300.

This is a very toxic drug, but the rest of my lab, especially the sensitive renal function tests as Cs is a notorious kidney puncher, were all boringly within nomal limits. My blood pressure was up a bit which is another comment adverse event, but still quite safe.

What should I do? Hold a dose which I did while waiting for an answer, and restart at a much lower level? Dr Sharma was not sure. me either, so we turned to Dr Forman who uses this drug for protecting transplanted marrow.

And why no side effects? Not that I was complaining.

Turns out my peak level is meaningless. The trough levels are the whole story. measured at the end of the last dose, generally in the morning BEFORE the first dose that day. When taken by mouth, it is a twice daily med.

Cs with it's more measured modulation of immunity, is THE drug that opened the door to solid organ transplants. Before it burst on the scene, the only player in that arena was the infamous carpet bomber of the immune system, high dose steroids, and outcomes were not good.

The theory is that in order to prevent the beginning of the rejection of a transplanted organ (heart, kidney) it is critical to not let the Cs level dip below a certain safe threshold that is adequate to turn off the natural immune triggered rejection response.

I would guess the same principle applies to shutting down the immune modulated destruction of my platelets, but I don't know that for sure.

It is an off label, though not uncommon, use of this medication to treat ITP, so I bet pounds to peanuts that the guidelines are based on historical consensus and not on well designed studies.

So the peak levels meant nothing to anyone, and I am back on the same dose, waiting to get a trough level next week.

Lessons relearnt:

Timing is everything.

Details matter.

I miss stuff, so ask for help and keep fact checking.

And finally,

Not every result that looks scary, is scary.

PS Dr. John is performing at the Coachhouse next week. Very tempting.

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Anonymous Anonymous said...

I hope you are not taking this:


June 5, 2010 at 7:50 PM  
Blogger Judy Cleri said...

Dear Dr. K,

You are so right........what seems scary is not always scary. Remember when all my tests kept coming back that I had lung cancer.....the surgeon even said he had no idea why we were wasting time doing a biopsy. Low and cancer........just that old sarcoid. So, please don't go to that scary place. I know your situation is so much different, but it is still a scary place. I'm not sure if your being a doctor is a good thing or not in your situation......too much knowledge is not always a good thing.

Just know that you are loved by many and prayers are always coming your way........


June 7, 2010 at 3:04 PM  

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