MPN Voice | HealthUnlocked

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'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...

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...

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...

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...

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...

Hi all, I've just had a call from the hospital pharmacy and apparently I'm being transferred to interferon alpha... I was on Pegasus. I'm just wondering if...

need some advice - my 19 year old was diagnosed with ET a year ago - we were talking last night and I feel he doesn’t know enough to ‘own’ his condition if...

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 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 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...

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...

Switching from Ruxolitinib to Momelotinib.

This is a recent presentation br Dr. Hans Hasselbalch regarding the role of inflammation in MPNs and the implications for treatment. It covers quite a lot,...

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

Does anyone have any information about this supplement which is claimed to be a natural alternative to hydrea?

ttps://mpnresearchfoundation.org/news/skin-cancer-awareness-month-non-melanoma-skin-cancer-and-mpns/ Skin Cancer Awareness Month: Non-melanoma skin cancer...

Hi all, I’m now + 168days post SCT. Consultant clinic visit last Friday showed that white, red cell and Haemoglobin remain low & T-cell chimerism had fallen...

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...

Hi everyone, I’ve been a member of this community for a while, and I’m so grateful for the support and shared experiences here. I’m writing because I’m...

Hello all, I saw some members discussing the dosage of interferon previously, and those discussions have been very helpful. I want to share that when...

Hello All~ I have been on hydroxy for ET for 9 years and have tolerated it well. My MPN specialist has talked to me about switching to Besremi. I also have...

I'm wondering whether there's any connection between either Polycythemia vera or hydrea with Rayanud's? I'm experiencing quite painful and very persistent...

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...

Morning all,Just wondered if anyone under the age of 75 has managed to get the RSV vaccine My haematologist has written to my GP but still not forthcoming ....

Is it possible after 5 years on low dose 500 daily to become intolerant to Hydroxy? Platelets only down to 700s but am reluctant to increase while not feeling...

my platelets have been consistently high all year. Initially it was thought it was due to iron deficiency but that has cleared and my platelets have increased....

Forgive me if this is inappropriate, but my husband and I have lost our house in the Eaton Canyon fire currently being worked on in Los Angeles County, CA USA....

Hi all, I have just been told my PV, after 7 years, has progressed to Mylofybrosis. Still waiting on some Genetic marker results but it is what it is. I have...

Hello. I will ask the haematologist but wondered if anyone of you had experience? As the meds reduce hct, rbc, wbc, platelets is there usually a notable...