Anyone here familar with rapamycin - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,402 members10,612 posts

Anyone here familar with rapamycin

sander profile image
6 Replies

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 !

Written by
sander profile image
sander
To view profiles and participate in discussions please or .
Read more about...
6 Replies
MaryF profile image
MaryFAdministrator

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.

ard.bmj.com/content/early/2... MaryF

sanderotter profile image
sanderotter in reply toMaryF

Thnks Mary

Salty profile image
Salty

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.

sander profile image
sander

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)

Lure2 profile image
Lure2

Good luck!

Best wishes from Kerstin in Stockholm

sander profile image
sander

I am already using this drug for two weeks now.it 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

Not what you're looking for?

You may also like...

New here...anyone from Ontario?

Hi there, I have APS and moved to Ontario (near London) from Alberta 3 years ago. I have yet to...

Anyone with a similar experience?

Hello! I hope you are all doing great! A year ago I had optic neuritis without any previous...
FF96 profile image

Anyone here from Ontario, CANADA?

I'm just looking for anyone that is in my province that also has APS. I am pretty confident in the...
jaymacz28 profile image

Does anyone else suffer with restless legs?

Sometimes mine are so bad it stop me sleeping. My legs feel heavy, hot, twitchy and like they are...

has anyone had a problem with bone fractures?

As I've previously posted, I have APS and Factor V Leiden. I was diagnosed about one and a half...
mozelle profile image

Moderation team

See all
KellyInTexas profile image
KellyInTexasAdministrator
HollyHeski profile image
HollyHeskiAdministrator
lupus-support1 profile image
lupus-support1Administrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.