Tuberous Sclerosis

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.
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.

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Melanie, are you taking rapamycin pills or using topical cream? If pills, what’s your dose?