Sirolimus (Rapamune)

dancermom · #1 06-27-2012, 10:21 PM

Is anyone taking this drug for their AVM? If so, can you share your experience with it?

havefaith · #2 08-20-2012, 03:38 AM

I was just wondering if you ever received a response or if you began using Sirolimus to treat the AVM, and what the outcome was/is. Our Dr. is suggesting that we begin treatment of my daughters extremity AVM with this drug. Any insight would be helpful.
Thank you.

dancermom · #3 08-31-2012, 11:24 AM

Hello, havefaith. I have a couple of articles I can send you about Rapamycin. Also, I know one or two people who are taking it at AVMSurvivors.org If you join AVMSurvivors, I can put you in touch with them.

I highly recommend the site -- there are over 500 members there with Extremity AVMs, and information sharing can be very helpful. It made all the difference in my son's case; he is now AVM free.

Do you mind if I ask which doctor is recommending Rapamycin? I like to keep tabs on which AVM docs are trying different drugs.

dancermom · #4 08-31-2012, 11:25 AM

Sorry, sirolimus and rapamycin are the same drug. I didn't mean to cause any confusion.

ermahampton · #5 12-10-2012, 05:56 AM

I had a liver transplant in March 2007 and was initially placed on Prograf and Cellcept. My HBP meds didn't work as well, so my post-transplant team changed my Prograf to Rapamune 1mg and my HBP stabilized. Other than the drug cost, I am highly satisfied with it. Unually Rapamune is not used in liver transplant patients, but doctors are finding that is work as wel as other immunosuppresants. I am glad I had a choice!

dancermom · #6 02-06-2013, 11:52 AM

There is now a group on Facebook for parents whose kids are taking sirolimus for complex vascular anomalies. If your child is currently taking Sirolimus, or you are considering the drug, you may wish to join it.