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Is 60 the magic age to start meds for PV?
I don't think immunosuppressed folks with transplants (like me) can take interferon meds, at least, not besremi.
We all need fun in our lives. =)
I have PV, having fortnightly phlebotomy's and are taking 1000mg hydroxyurea daily. I have been taking HU for 3 weeks now, but my hematocrit levels are still at 61%. How long would you expect it to take to start decreasing your levels? I guess it is a bit of an open ended question, but what have others experienced out there, to give me an idea. Much appreciated.
Thanks for sharing your experience Janice! I learned a lot and agree with you
Ruth
Today I had the lowest platelet count I have had in the 1.5 years of blood tests since this diagnosis (634k today, and have been up to 923k), but was convinced b/c of the head tightness etc it would be worse. Nothing different at all in terms of diet, workload, etc. Maybe I am transitioning…confusing! I guess naturally we have a range of fluctuating up and down constantly, but this range seems large. As background, I am on daily aspirin but no other meds at the moment.
As it turns out, the platelet count on my last test was 821K from the lab, so you can’t really trust the on-site machines/spinners that spit out the results right away! Now I am re-thinking my… 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
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
My potassium is high but from things I have read, this can be directly related to this condition. Does anyone else have this side effect or know about this being a result of ET?
Since I originally posted this question I have learned a high platelet count can coincide with high potassium
Hello everyone!
Hope you are all doing great and feeling so well.
I am 51 and i have been diagnosed with ET last month. I also had my spleen checked with ultrasound imaging. I want to know if it will be regularly checked, i mean how often: quarterly, semiannually or annually?
Also after my medication dose is fixed (i am on Anagrelide), how often shall i do the blood picture? Last question: what are the tests other than the blood picture that are done in regular follow ups?
TIA
Janet dear you have been through a lot. Hope the new medicine works great for you. Wish you all the best. Lots of hugs and kisses from me
I'm new to the group and appreciate the welcome comments I've received. I was diagnosed with PMF two years ago at age 66 after a routine CBC indicated I was anemic. I was referred to a hematologist, had more bloodwork done and then a bone marrow biopsy, which confirmed the diagnosis. I have JAK2 and DNMT3A mutations, get Aranesp injections every 3 weeks that keep my Hgb in mid-9 range, am considered Intermediate Risk 1 and am "watchful waiting." I've done my best to remain active despite… read more
Hi Virginia, which MPN did your mom have - ET? Is there any insight that you may have as to why her MPN went away?
