MPN Voice | HealthUnlocked

Thanks to everyone who responded to my previous post on Progression. Since then I have had my BMB and the worst has been confirmed. Not only have I progressed...

Wishing everyone a Peaceful and Joyful Holiday Season and Best Wishes for the New Year.

I’ve had a “spot/growth” on my arm for a few weeks, it seemed to come up very quickly but didn’t go away. I called the GP and was directed to the nurse...

I was diagnosed with polycythemia vera in 2020. So far treating with phlebotomies (not medication). This year have developed aquagenic pruritis. Severe,...

From about last week, I've been affected by dizzy spells. Very un- nerving. Never experienced this previously even after a "hard day's night." I'm ET...

The results are in from my labs on 12-02-2024. Overall, it is good news. JAK2 VAF is stable at 10%. This is the same as last year. History JAK2 VAF -...

Hi, I did my first dose of besremi tonight ( changed from peg due to shortage) was nervous with the change of how to use new pen type and forgot to check if...

I got a Jak2 VAF update Dec 3. It was 3%, down from 5% a year ago and 14% at start. The latest reading of 3% is a 79% reduction from baseline. See following...

Hello everyone Is that time of year again, Christmas. Used to love it and now I dread it. We have a large family and of course we want to see them. We keep...

I was diagnosed almost 2 years ago with ET with Jak2 Mutation. I am still on 500 mg Hydroxyurea, the minimal dose once a day! I saw an ENT yesterday. The...

Given the global shortage of Pegylated Interferon till July 2025, I, like others, have been asked to increase my dosage but decrease the frequency of my...

I had a blood test this morning, just a 6 monthly check and within an hour for I received an email from nhs patient knows best with my results. Also with...

just had my blood test come back as jak 2 positive which i paid for private as my hb was 19.8 on latest ahn i think hct 0.58 but my gp wouildnt order the test...

I've posted before on my improved sight since being on IFN. This is the eye chart test (near 20/20) and real life seeing road signs etc. This improvement...

Hi all the amazing people on this forum :) I am 41, have ET that has progressed to PV as well now. I was on aspirin alone for about 12 years, then when my...

Hi, next update to share where I’m at. It’s now +98 days post transplant and bloods are going a little south and have picked up a virus (adenovirus) which my...

I think a while ago on here someone mentioned an app whereby you could find your hospital results. I can’t remember what it is. It’s not the normal NHS app as...

Here I am @ +120 days post SCT. Have just finished the intravenous treatment for the adenovirus chest infection as had two consecutive clear results! 🥳🥳🥳...

HAPPY FESTIVE SEASON ALL MY MPN BROTHERS & SISTERS... WHEREVER YOU ARE... May it be the best New Year ever! 8-) Steve(Sydney)

it's been a while since ive been on ! This is due to me being not so good but i just wanted to say to all the mpn patients. I WISH YOU ALL A VERY MERRY AND...

Hi, I'm Jak2+ with P-Vera and 10+ yrs on Jakafi - basically since it was first approved for PV. My recent labs and BMB results no longer fit neatly with PV...

I will riseAfter every fall. I will rise And stand tall. I will rise Over the wall. I will rise Above them all. Like the sun, Which never dies. Though sets...

Is anyone getting the RSV vaccine.

Been back to my local hospital today. Latest blood results - Platelets 341 Haemoglobin 101 White cell count 5.5 RBC 3.49 Haematocrit 0.31 RDW 22.7...

I read that you can get pml taking jakafi.....is this rare or common?

Wishing everyone involved with the forum a Merry Christmas and a Happy and Healthy New Year! (Thought the picture might make some of you smile, the hat didn’t...

Greetings, MPN family. I switched from HU to IFN-α this past July. I did so in hopes of benefiting from the disease modifying properties of IFN-α. At...

Consistently increasing platelets (over 750) but on my hospital visit this week they have dramatically reduced to 52. My hydrea prescription has been...

I am taking hydroxyurea for my pv. From what I have read since I joined the group, there doesn't seem to be a way of confirming early the onset of...

hi, hubby has had PV for 10 years, been on hydroxy but still had venesections every 5/6 weeks. In feb his counts went down, then again in May… knew something...