Have pTen mutation (Cowdens syndrome). Time to get back on sirolimus

#1

Hello! Long time lurker - first time posting. Brief background:

  • family history of dominant PTen gene mutation
  • about 15 years ago was in a study at NIH for people with the mutation, taking Sirolimus
  • I reacted really well on the meds in the study, and it even shrunk a fatty mass down to where it couldn’t be scanned
  • was on sirolimus a couple of years after the study as I was fortunate enough to find a doctor who read the study and was quite open to prescribing it for me. No issues, except unfortunately he left practicing medicine so I stopped taking it :frowning:

Fast forward to now. I think my mutation is catching up to me and time to go back on sirolimus/ rappamune. Im 53, have stable thyroid nodules, but just got back an abnormal breast MRI.

Wondering thoughts and opinions on how easy is it to buy from overseas? I’m tired of having to try and explain what I have to doctors, how the medication helped, and them being too scared to prescribe.

I live in DFW area and I’ve seen at least 1 doc on lists that will prescribe? Anyone in DFW that can recommend a doc?

Anyone the thoughts on everolinus vs. Sirolimus? I’ve read good things, but never taken it, and I know I’m fine with Sirolimus.

Would love thoughts and input! Thanks!

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#2

Did you check the Buy Rapamycin tab at the top of the page. It is a good place to start to find a doctor, or just order from India.

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#3

If there are studies that show Rapamycin works in Cowden syndrome, can’t you see a specialist and get a prescription?

#4

I will check it. Thank you. I looked for something like that but I must have just missed it. I will look a little more carefully.

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#5

Hmm I thought I responded. But I don’t see it here. Basically their reason is that it’s not FDA approved for what I have. Even though the study showed it was effective, it was a small study. And I don’t think it has gone much of anywhere past that. I’ve seen a few follow-up type studies, but nothing major. I did find one doctor to prescribe it for me once, but most are too nervous to do so because it is not FDA approved for my condition. But I could try again; maybe things have changed in the last 10 plus years

#6

The best thing would probably be to talk with some of the doctors we have in our list here that are licensed in your state: How to Get Rapamycin, Where to get a Prescription

Failing that, you could do like many people do here and just buy from one of the other online sources directly and try it.

#7

Since you’re not taking it for longevity, are you taking a different dose schedule - daily?

#8

Good question. Not 100% sure yet. When I was on it before it was 2 mg daily. I’ll probably start back with that at first

#9

If you’re taking it daily, which implies using it as an immunosuppressant, I would recommend working with a physician.

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