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I have ET, Jak2 pos.
Last night I drank some ginger ale to settle my stomach. By bed time I could feel the tingling start to leg cramps due to the carbonation. I wondered if the arnica oil I use on my bad hip could help… read more
i agree , PatriciaB what to think about going to pharmacy to bring a box with used needle ( self injecting interferon )😊
My mpn specialist decided I needed besremi. Today I got the med in the mail. I'm nervous. Can anyone share their experiences and side effects with me? Any advice?
Very similar for me - no side effects at all and after 1 year my RBC are almost normal and I've had no phlebotomy for 6 months.
Hey lovely people, hope you’re all doing great
I want to know when did you start to take drugs to lower platelets counts? How long after diagnosis and at which platelt count? What drug did u take
Also state if you have any condition other than MPN that increase your risk.
I am on anagralide and aspirin as my platelets are over 900 but i want to ask my doctor to stop the anagrelide and only stay on aspirin.
Want to know your experience.
I am 51 wit ET (CALR+) and i also have high cholesterol… read more
I was 52 when I got diagnosed with ET and my platelets were around 600. My hematologist immediately started me on hydroxyurea. I had originally been having terrible headaches before my diagnosis and… read more
But I’m told on here that an MPN Specialist would generally make you get one?
I have residual pain from my bone marrow biopsy. For me, the initial pain was fine, it’s the ongoing that sucks
I was on Jakavi for 6 months and gained 5kg. Now it is difficult to lose it.
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.
I have ET and have been taking Hydroxyurea for 10 years. My platelet count is under control for the most part but recently (past 8 months) my Hemoglobin has been low and I get injections every 2 weeks to help with that but haven't had much success. My Dr. is recommending that I stop the Hydroxyurea and start Anagrelide. Curious about the side effects and tolerance.
Thank you.
Hello again. More details on switching from HU to Anagrelide. Hope something in this long missive will be useful
My transition from HU to Anagrelide began when I switched to hematologist/MPN… read more
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
Many of us myself included have said we noticed changes in our bodies and self and symptoms long before we were actually diagnosed.
This bothers me bc I want and need to know, as do we all.
It’s wrong to go by the date we were diagnosed.
Anyone? Thoughts?🤔
Depending on the type of mutation you have, you can sometimes distinguish between inherited and spontaneous, as well as using VAF % between different testings (it is good to repeat the genetic testing… read more
