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Naturopath/Holistic Approach To Treatment?

A myMPNteam Member asked a question 💭
Oklahoma City, OK

I was just curious if anyone has gone a more natural way for treatment and willing to share their story? I was diagnosed with PV in October and am exploring options. My symptoms aren’t really an issue at the moment but my numbers are continuing to rise. Thanks for any stories you may have to share!

November 25, 2023
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A myMPNteam Member

Update in March 2024: I recently switched to a hematologist who is an MPN specialist. He switched me to Anagrelide, which reduces platelets without side effects of the Hydroxyurea I'd been taking since 2022. But reactions to meds differ. I take the doctor-prescribed meds because I don't want to risk a blood clot from too many platelets. Medical team doesn't tend to have info about supplements, but in addition to Turmeric I added B-12, for energy., My doctors approved both, but I read a post here by someone who believes B12 increases platelets. Easy to find conflicting info. Bottom line, I think, is to check with one's doctors for OK of supplements, plus there's medically-reviewed info on this website that can be helpful.

March 3 (edited)
A myMPNteam Member

Hi Serena and Ben. I've got ET due to a CAl-R gene mutation. This was diagnosed in the summer of 2020. I am 71 years old. I've been frustrated about the lack of alternatives to getting my platelets into normal range, other than taking Hydroxyurea (HU). Probably that's something I've had to accept, as I don't want a blood clot that could lead to a stroke or heart attack. I am taking Turmeric, though, as I read somewhere on this site that it may help reduce platelets and my doctors say it is OK.
Unfortunately, starting in January of this year I've had to gradually increase the HU to some days of two pills, as platelets have been growing up. I think that's the normal course of the illness but it's disheartening, plus increasing the med worsened side effects. A diarrhea issue greatly improved when I cut out magnesium, but I still have issues with headaches and not sleeping well. Working on that. Might be related to lowered red blood cells caused by HU, but I've been told not to worry about that as hemoglobin and hematocrit are OK. Am going to get a second opinion soon.
I'm also thinking that dropping a few pounds would be helpful to reduce risk of stroke or heart attack, regardless of platelet level. But that's not easy and it may be that either the ET or the HU is making weight loss more difficult.
With best wishes,
Janice

November 26, 2023 (edited)
A myMPNteam Member

I haven't explored that, would be curious to know though

November 26, 2023

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