Reducing platelets with Rapamycin?

Posted by cshew @cshew, Oct 2 2:02pm

I have been reading about Rapamycin and am curious if anyone has any experience with its ability to reduce platelet count and/or stroke risk in people with ET when taken in low doses. Thank you

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Lori, Volunteer Mentor | @loribmt | Oct 6 2:38pm

Hi @cshew, Rapamycin (Sirolimus) is a medication primarily used as an anti-rejection meditation for patients having received organ or stem cell transplants. If you’re considering using this to lower your platelet level caused by essential thrombocythemia that is definitely a question for your hematologist.
When you were diagnosed with ET did you have a genetic test run to help determine the cause? Has your hematologist discussed possible treatments?

cshew | @cshew | Oct 7 10:19am

Hello Lori, Thank you for replying. I am a 60 year old otherwise healthy female and have the MPL Exon 10 mutation. I am on baby aspirin at the moment. Below are my detailed platelet numbers. When my platelet numbers hit 892 at my 5/1/2024 appointment, the doctor said that I should prepare myself to go on hydroxyurea. I asked if I could try to bring it down naturally and he agreed. I started a primarily colorful, plant based diet, acupuncture and resveratrol. My number went down at my next appointment 5/29/2024 to 698. In June, I had a lot of visitors and was inconsistent with the acupuncture/diet and my number went up on 7/10/2024 to 789. I went back to being diligent and my numbers went down again on 9/27/2024 696. I realize that this could just be coincidence, but my numbers were steadily rising before I started taking action. I was researching other things that would bring my platelets down and/or prevent a stroke without side effects. I came across Rapamycin (Sirolimus) and my understanding is that it has no side effects when taken in LOW DOSES and that it inhibits platelet activation/anti-thrombotic by inhibiting the mTOR pathway and inhibits platelet production by supressing the mTOR signaling in megakaryocytes. My next doctor appointment is not until January of 2025 but I will do as you suggest and ask him about rapamycin at that visit. I was just checking in with this forum to see if others have had any experience with it so I could share this with my hematologist. Thank you again for replying.
My numbers which led to my diagnosis/treatment and shows my pattern as I age.
2/20/2018 404
7/19/2018 410
1/24/2020 453
3/23/2020 435
5/22/202 413
9/18/2020 424
1/15/2021 458
2/12/2021 479
8/6/2021 433
9/19/2021 456
2/12/2021 479
6/11/2021 407
9/17/2021 434
12/16/2021 488
3/16/2022 488
10/28/2022 505
1/3/2023 528
5/12/2023 525
10/16/2023 610
2/1/2024 643
3/6/2024 688
5/1/2024 892
5/29/2024 698
7/10/2024 789
9/27/2024 696

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