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...

Dear fellow MPNers . Happy New Year. I also fell foul of differing local criteria for transfusions: in Edinburgh, where I’d moved to partly for the good...

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

I have suffered from mild anaemia in the past and took iron tablets for it. Now despite taking iron tablets I am still anaemia. My haematologist has told me...

My Hgb was down to 57 ( yes fifty seven), I was sent to Edinburgh as an emergency and I had a unit of packed red blood cells which brought it up to eighty...

I have ET (+ bone marrow fibrosis). I changed from Anagrelide then back to Hydroxycarbomide (which I don't get on with at all so they just tried it again) to...

Hi All.I will be starting Hydroxycarbamide on 31st Dec taking 500mg everyday. I only have one concern. When I was taking interferon to control my blood levels...

Hi all, good morning and wish you all a wonderful holiday. I had a conversation with a friend about the difference in efficacy between old and new...

A belated happy New Year & hope everyone had a lovely Christmas. I was wondering if anyone could recommend travel insurance companies, as travelling to the...

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...

There are trials of this sort going on, some members are in one. Not sure if this one has been posted. It's from China n = 44 for the full period of 2...

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...

Hi everyone, Wishing you all a happy New Year! I was advised by a senior member of the Consultant Team approx. 12 months ago that I should absolutely not...

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 -...

My 76 yr.old husband has been diagnosed with this and soon will have to start treatment with Hydroxyurea. He had no symptoms and the diagnosis was found after...

high MCV levels, polycythemia Vera, and vertigo. On aspirin and HU. Please tell me your experiences with these symptoms and how you treated them. Thank...

I have ET with JAK2 mutation. With the shortage of Pegylated Interferon my Haematologist stopped giving me any medication except for Clopidogrel. My last...

Happy New Year to one and all! Quick question. I' ve had PV for 16 years and have now been taking ruxolitinib for 5 months, which I know lowers immunity. I...

Hi all hope you had a nice Christmas and wishing you all a happy new year. I’m hoping for some advice and tips regarding indigestion. I started on aspirin in...

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

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...

Has anyone experienced disproportionate weight gain after taking hydroxyurea for essential thrombocythemia?

Hi does ruxolitinib cause low pulse rate ??

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...

Hello everyone, does anyone made a claim with Zurich under critical illness for et jak2? I'm waiting and feel anxious about this, anyone been declined? I'm...

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...

No bone marrow biopsy, started on HU immediately. Would I be considered too old to start an interferon drug?

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...

Just wondering, if anyone has had the dreadful stomach bug over Christmas? This is the 1st time, I have had a bug after starting hydrea and I feel it is taking...