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You never have to start cytoreduction for asymptomatic ET unless you believe it is in your best interests to do so. There is a risk stratification system in place for ET. I believe your profile… read more
My Hema said I could do it in their office. I’ve heard it can cause iron deficiency, anemia, loss of nutrients.
But it’s gotta be less toxic than an Rx, right? Seems all options have pros and cons? Some better and worse than others.
Thought this could be a good place to start for if and when I’m told baby aspirin isn’t enough.
New to all this mess and just started baby aspirin Jan. 31 but don’t even want to be on that.
🤷🏻♀️
Forgot to include the 20 year longevity study. The Anagrelide < HU study was separate from the phleb + aspirin < HU < interferon study.
Issues such as chronic migraines, headaches, fatigue, itchy skin, worsened vision, occasional burning feeling in feet, intermittently getting hot, brain fog, body inflammation, etc.
Would peg interferon help these? Jakifi? What others?
Trying to learn 🤷🏻♀️.
Steve, thanks for your input. Always valuable.
He was proactive at least
ran extra blood tests, did a blood test to check blood thickness, a chest CT scan to look for clots, a pelvic ultrasoundand to check spleen if enlarged, and a transvaginal ultrasound bc longer heavier shifting periods last 3-5 years.
Chest CT Scan negative, pelvic ultrasound no clots either. I didn’t think there were but felt better doing it bc I have medical anxiety, and anxiety about Rx, meds, even some holistic herbs, etc.
I think period issue, being 44 and also… read more
I go to MDA and they accept my insurance. I just got on Medicare, but they seem to indicate they will pay. You do need to see MPb specialist. The local oncologist/hematologist doesn’t usually have the… read more
I use Maxalt melts when hit with a Migraine
My MPN specialist recommends no treatment other than a daily low dose aspirin. I am 67 years old without history of thrombosis or other co-morbidities. I was diagnosed in 2022 by routine blood work and BMB and am currently asymptomatic and active. Thank you.
Hi Hannah,
I had a fast look through the studies I saved over the past 4 years, and I found some guidelines for practitioners that I downloaded from somewhere years ago and it is stated there that in… read more
My Dr is starting me on hydroxy regardless I guess because of symptoms, fatigue and headaches. Anyone else in those platelet levels and on hydroxyurea. I'm a little apprehensive about starting it especially seeing that my levels are dropping. Is it too soon?
One more thing, I credit 6 day a week cardio, 20 min on bike and 20 min on treadmill for drops in levels, also lots of water and good nutrition.
Never make changes towards your meds unless advised by your Dr. As these are just not a normal medicine.
It is strange how the article is written. Under treatment for pain of MPN it states for aspirin
"Aspirin is given in small doses to help prevent the formation of blood clots in the body. Blood clots,… read more
I have been treated for 10 years with mixed results but tolerate as best as I can. Time for different meds?
Only you know best
Dear Mark,
It seems like you have familial ET, given that you mentioned your mother was also diagnosed with ET. And you seem to have two somatic mutations
I remembered about this study and maybe it… read more
