MPN Voice | HealthUnlocked

Hi there can anyone advise me please. I have ET with MPL and someone I know is trying to convince me to go on the keto diet ( high fat, low carb) because of...

Well, on Thursday I had a Tilt Table test and it was positive. My blood pressure rose to 185/110 before taking a nosedive to 80/54 with me on the verge of...

I’ve been on Pegasys for 16 months. When I started, my JAK-2 Allele burden was 29%. Today it is 14%! I was one of the folks who needed a higher dose of Peg...

I will preface this by saying that I am truly grateful that I am feeling better on Jakafi. It has only been two months, but my numbers are better and most...

Hi, hope you are all keeping well. I am Jak 2 on Hydroxycarbamide for the past 10months. My platelets were down to 475 but my last blood test showed they were...

hi after reading various posts it is recommended that you see a MPN specialist I am in Essex Chelmsford/Romford area but can’t find local specialist

Having seen my haem on Thurs and explaing some of the symptoms/side effects I have recently been experiencing (long bone pain, ‘fizzy’ hot feet, mouth ulcers,...

I have been on Besremi since May 2023, now consistently at 500 mcg. So far it has brought my platelets under control where they have remained 200-300...

Can someone please explain what is the Allele Burden ? Should I be having a regular measurement, by means of a blood test ,to monitor the progress of the...

I don't understand why I keep falling asleep after breakfast. It has begun recently after about 4 pm but now, while I'm waking up at the sort of time everyone...

Hi all, Hope everybody is keeping as well as possible and you can enjoy the summer days, even with the strange weather this year :) Personally, I have been...

Yesterday, my MPN specialist recommended that it's time to do a transplant. Even though I'm only intermediate-1 post-ET MF (CALR, ASXL1) and generally...

Hi Everyone, I’ve been documenting my story on here both for advice for myself and also for others to follow should they be in a similar situation…. Quick...

I just need some good vibes. Feel like my last hurdle before I can breathe is tomorrow. I go back to MD Anderson. I am hoping for good labs and another see...

Hi Ive just joined, I have quite bad asthma and was reffered to a clinc without did various blood tests and found raised hb and heaomocrit levels and i then...

I've recently started Besremi for treatment for PV. I will be transitioning from hydroxyurea, and wonder if others have experience with this. How long did it...

Hi all, just to give you an update on my journey towards my *Allogenic Stem cell Transplant. Last tests @ Addenbrookes yesterday, was a very early start as...

This is just a bit of a bright note. I just finished a bit of a holiday prior to a 5-day conference in Brussels, Belgium. I had to fly with the Besremi then...

I’ve just been comparing some blood test results, first two from haematology, third from GP 29th May 2024 RBC 2.68 10*12/L WBC 5.5 Haemoglobin 78 g/L...

Edit…. I spoke with my MPN Team on Monday and took their advice. I’m feeling much better now and thanks for your messages etc. Hello, I’m having a...

Hello My husband had his 6 month check and platelets were 946. They seem to be going up since he has been diagnosed in 2022. Is this the trend do they tend to...

I see so many posts where people discuss reduction in JAK2 allele burden. In particular how certain medications are responsible for that reduction. I know...

Hi.I have been on Hydroxy for almost 9 yrs 1500 daily 1000 sat 500 sun. No side effects Controlling platelets 500 -700 Also on 75mg asprin I queried long...

Saw the senior Haematologist in Bristol on Friday due to the junior doctors strike. She told me Prof Harrison had done a presentation that week in which she'd...

About two weeks ago I put a post on here about my anxiety around changing my treatment plan from Hydroxy to Peg Interferon. I had been sent the vaccine but...

Hello all I feel at my best when my haematocrit is between 38/39 and 42. I have a bit of difficulty getting my haematologist to understand this - he says as...

Hello friends, I posted some months ago about needing hip replacement for arthritis, and I appreciate the many replies I received. I am 5 weeks out from my...

Hi I have PV been taking hydroxy for 5 years. I have terrible joint pain ,muscle pain and severe fatigue that comes and goes. My last bout lasted 6 weeks of...

Hi diagnosed with pv 2014 been on hu since with phlebotomy when needed been more or less fine with hu up and down doses then for about a year or more...

Well I've made it to the first mile post, I can't believe it's 100 days since my SCT, I cannot thank my brother too much for being my donor. I still have low...