MPN Voice | HealthUnlocked

Hi, all. I've been on Besremi for two years now and wanted to share an update and my experience. It's been a very good experience, so far; and I'm optimistic...

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...

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...

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...

I am 48 years old and was diagnosed with ET a year ago cal r mutation I'm doing ok good and bad days I'm on aisprin and interferon 90 mg every second week...

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...

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...

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...

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...

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...

I’d be grateful for any advice or guidance on starting Interferon for ET CalR mutation. I was diagnosed with ET approximately 12 years ago when I was 57. I...

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...

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...

I just had my routine 4 month bloodwork and my platelets are normal at 399. They were also normal in March at 396. I haven’t had normal platelets in about 10...

My now long suffering wife, had another blood test this morning, and told to go home afterwards and await the results. The results were Hgb 79 platelets 4 yes...

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 am nearly 79 and have been dx with ET since 2021 and on hydroxycarbamide and low dose aspirin. I got shingles in June 2022 and it was pretty awful for about...

Hi all, just to give you an update on my journey towards my *Allogenic Stem cell transplant, my transplant team @ Addenbrookes Hospital are working towards me...

Good morning everyone! My name is Melis. I'm a 38-year-old female who found out I'm Jak 2 positive. I have an appointment with the hematologist on 06/11. Does...

Hi has anyone on here who suffers from hypothyroidism and takes thyroxine found that after an increase in Hydroxycarbomide they have needed an adjustment to...

I’m 72 years old hispanic female & was diagnosed with Chronic Myeloproliferative Disorder - Primary Myelofibrosis on January 2024. I started with Jakafi 10 mg...

Hello. Those of you who have lived with PV, particularly with raised thrombotic risk, for several years please may I ask whether your MPN specialists adjust...

Thank you for the previous tips. I tried them but still had an angry (larger!) reaction this week, but it went down much rapidly and hasn’t itched or bruised...

I started Besremi two weeks ago. My first dose was 100 mcg. I am supposed to take my second dose today, and increase it to 150mcg. The thing is, I had a BMB...

Months after applying I finally received a scanwatch. A previous email had said someone would call to assist with set up. So far I have not received any call...

Despite a healthy life style (healthy diet , regular exercise and 8-9 hours sleep) fatigue comes on fast and strong most afternoons. Eyes become heavy and...

Greetings, all. Can anyone please recommend an MPN specialist in Chicago? I’d appreciate any recommendations of a capable specialist in the city. Thanks so...

Good news on the labs today. Since the phlebotomy on March 26 my HCT is staying below target. It actually dropped some more this time to 41.4%. LYMPH and...

Any top tips for managing localised reaction at interferon injection sites please? (raised red circles, about 4cm wide and itchy). Will dig out baggier...

Hi everyone im on 90mg interferon every second week since Feb this year platelets were 1110 came dwn to 916 quick enough but haven't really moved dwn much...