MPN Voice | HealthUnlocked

Hello everyone, it's been a while since I last posted, today I received the saddest news ever, my hematologist told me probably progression to myelofibrosis,...

hello, I’m a 50 year old female with ET diagnosed in 2021. Platelets were high at 1500 so was prescribed interferon 135mg. I could only tolerate 9 months after...

Hi Have been on Hydroxy for 5 years 500mg daily and all of my toe nails are now yellow. It’s not fungal nail , is this usual? Am only too pleased that it’s...

Went to see my wonderful local hematologist on Feb 05. What a great doc!. He listens and explains things in the way the patient prefers. He never dumbs...

HiSome good news to share when I was diagnosed with PV in May 22 my jak2 result was 44.65 I was just having venesections and had 16 from diagnosis till Aug......

Hey guys... :-) Thought some of you might find the following copy of a POST I've just placed on MATES in Oz an interesting read... Best wishes Steve...

Yesterday, I received my transplant date—27 February. It feels quite surreal, but I’m choosing to stay focused on the ultimate goal: being cured. At just 44, I...

If platelets go up over a certain limit, is it advisable to stop taking aspirin? If so, what is that limit? Mine have gone up to 1200 and I’ve been told to...

I just received back my allele burden and it has finally fallen from 14.5 in April 2024 to 8.45. It will be interesting to see what happens now since I've only...

Has anybody heard comments on the impact of elevation with those with a PV? For example, is it safe to live at altitude (7,000 feet) or does that increase risk...

I've just reached the 2nd anniversary of my sct. All is going well with no gvhd currently. My platelets are still a bit below the normal range (146) but this...

My husband has been taking hydroxyurea for ET for 2 weeks now with no ill effects. His recent blood test showed that his platelets were slightly lowered but...

My husband took this picture from our backyard when it got close as I rushed home. There was quiet panic on our street at that time. One benefit I had was...

Hello, My Dr.'s office told me they are switching me to Jakofi because Besremi was making my liver enzymes too high and not controling my red blood cell...

Hi Friends I have been on Hydroxycarbamide for over 3 year's my balance is so bad Haemotoligy Consultant says go back to GP who I told before. anyone have or...

I had a follow-up MRI and met with my Neurologist/NF Specialist yesterday. There is no sign of recurrence of the brain tumor. In fact, it seems I have a...

Hi I have recently discovered that i have 2 quite large bakers cysts behind my knee. I have ever since my journey with E.T had really bad bone pain. I am...

Hello all, New on Besremi, no other meds prior, just infrequent phlebotomies. Doses were 100-50-50... not really high. After first dose high blood pressure...

It appears that I’ve developed autoimmune issues whilst on Pegasys/Besremi (bad mouth ulcers and possibly Crohn’s in the lower oesophagus) so now have to...

I’m a 71-yr old female whose platelets have been elevated for 7+ years. They bounced around 400-450 for years, then went up to 450-500 in 2022-2023. A biopsy...

I was diagnosed with essential thrombocythemia in 2020. Although my platelets have been elevated since I can remember, and my father passed away due to what...

I know many readers with PV will wonder if they should not try some activities because of the fear that they will not be able to cope. I just wanted to write a...

HI all- I’ve been asked by my haematologist to switch from hydroxycarbamide to interfernon. I’m quite anxious due to the side effects as have tolerated hydroxy...

I have been on Besremi for 2 years now. May will be 2 years from my last phlebotomy. Labs this week were solid and stable. WBCs 2.5, hct 41, PLT 122,...

Hi, I have hade PCV for 40 years. I have only treated it with phlebotomies and alternative diet and practices. Due to declining hgb and very part spleen, I...

I have been on Hydroxycarbamide for so long that I forget when I started. Inevitably I have side effects but these are mild and part of life; itching became a...

Hi Everyone, Does anyone else have a diagnosis of PV + early Mylofibrosis intermediate 1 with focal grade 2 or similar but normal blood test results? I am...

Oh dear. Switched from peg to besremi. Tried to follow instructions. Messed up. Us there a you tube video anywhere.bits the 250mcg pen. I couldn't see the...

First - THANK YOU all for your input on this Fortunately my itching is not as bad as some of you reported. - PHEW! but nonetheless very aggravating..... I...

is it normal to feel sick nauseous on peg as first few days had a itch what was burning type and now all day I’ve been feeling sick