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@sregiani

Hi Lisa,
None of us like taking meds, and yes, there are side effects to everything. I'm 71 and have had ET w/JAK2 less than a year. My heme doc has taken a lot of continuing ed on alternatives - there is not much out there, but new research is coming out every day.

Have you talked to a pharmacist? They are more knowledgeable about drugs than the Dr's are! At least then you'd know more of what to expect. What works for one of us does not work for all.

A lot depends on what stage you are in, what your overall health is like, and if your docs are open to alternative ideas. My primary is a functional medicine doc, and he sent me to the heme doc he works with when my platelets hit 481. So, right off the bat, I think I have more options. I've been as high as 580, but now back in the mid-400's. My regiment includes 81mg baby aspirin daily, monthly high-dose Vit-C IV's (25 grams + nutrition), quarterly IV chelation and a boat-load of supplements. All this is paid out-of-pocket. My blood is now tested every-other month (was monthly) and my heme doc says I will avoid HU as long as I stay below 600. That's the benchmark he has set for me. I walk daily, take a core stability class w/weights and am otherwise quite healthy. I keep all my appts as scheduled and take the supplements as he recommends.

There is no way of knowing the future. I'm not familiar with MPL EXON 10, but JAK2 is also a mutation. It may stay the way it is, or become something more. It's really important that you are comfortable with your heme doc. My heme doc is a member of the MPN network. You can search online - they sent me a lot of good info.

It's vitally important to get your platelet count headed where it needs to be. You can request an appt w/Mayo Clinic. Maybe they can recommend someone familiar with alternative treatments and find if there is something that might work for you.

Best wishes on your journey 🙂
UPDATE: My doc's office just called and changed me from chelation to a different type of IV, all based on my blood work. This is why you really can't be an island and try to solve it on your own. If your heme doc doesn't know enough about alternatives, look for a different heme doc. Maybe you'll have options, maybe not. I'd start w/Mayo Clinic if I were you.

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Replies to "Hi Lisa, None of us like taking meds, and yes, there are side effects to everything...."

Can you tell me what supplements you are taking to lower your platelets? Obviously, what you're doing is working well for you