Hi.
New user here.
Anybody taking it prescribed for Tuberous Sclerosis. I am. I’ve been on it since 2007.
Thanks in Advance,
Melanie Angela Lane
Hi Melanie,
Can I ask whether you are based in the UK? How did you get prescribed this? I am really interested in the cream.
No. I live in Eureka, California. I had a massive kidney tumor that had been unsuccessfully operated on to stop it’s growth at University of California San Francisco hospital. I was under the care of a patient clinic focused on Tuberous Sclerosis affiliated with the Tuberous Sclerosis Alliance. I was approached to take rapamycin off label to treat the symptoms I suffered from. I was provided with the clinical data from trials done at Loma Linda with adults that had similar outlooks. I was surprised but definitely said yes. The doctor told me it was from Easter Island.
lol
That was 16 years ago. I’m sometimes curious about topical. It is available to me. I am 51. I don’t really think about aging so a lot of the anti aging stuff is curious to me. I was a goner, it extended my life. So, there’s that.
1 Like
Melanie, are you taking rapamycin pills or using topical cream? If pills, what’s your dose?