Sticky Blood-Hughes Syndrome Support
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Anyone here familar with rapamycin

My doctors are planning to subscribe rapamycin also known as Sirolimus. Mainly because it seems to give good results with aPL antibodies.

Is the use of this medication familar to anyone? It is sometimes used, or more often? And are there any knownresults?

At this time I have considerable inflammation in the blood vessels in my lungs.

A big hug to all of you from Holland !

6 Replies

Hello, I have found a paper for you, hope this is of use, you may be able to translate, all the best from the UK. MaryF

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Thnks Mary


The lead article in the NEJM a few weeks ago was on the use of sirolimus in APS patients undergoing renal transplantation. It markedly increased graft survival in these patients and they showed some basic science studies demonstrating the mechanism. I do not believe there is any data using this drug for other manifestations of APS, but surely there will be many studies forthcoming and a trial of sirolimus in your case definitely seems reasonable.


Thanks for your information .Among with more stydyresults and this article my professor thought it woold be worth to apply it. I will keep you informed about the results .Will start next monday (sept 1)


Good luck!

Best wishes from Kerstin in Stockholm


I am already using this drug for two weeks is making me a little high, just as if I am overdosed with prednisone. Because the level of medicine was too high in my blood they decide to prescribe lower dose. It is too soon to tell if this medicine works good on my inflamed blood vessels but at least I'm not feeling worse


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