MPN Voice | HealthUnlocked

My platelets are around 1100, minor symptoms ie the odd tingling in feet. I have been prescribed 100mg per day. Just wondering what everyone else is taking as...

Hello lovely people A recent Bone Marrow has shown what I believe to be early stage Myelofibrosis. Next appt in two weeks. Has anyone got any advice on any...

Hello, I had my first appt at Guys yesterday and it was incredible from the minute we walked into the clinic. Everyone working there was so very kind, nothing...

Hi I take 1000mg hydroxyurea and 1 clopidogrel daily for the last 20 years since I was 39. I feel I need a boost and wanted to take iron, b12, and vit d...

Good Morning All I hope you don't mind if I vent here as I know others have experienced the same sort of thing but I just had a very frustrating appointment...

Latest Guys visit last week was given all my results and it's definitely ET! no marsking going on just the seroneg arthritis rearing it's head.Allele burden...

After more than 4 years of not eating out we finally ventured out once for dinner with old friends. Four days later I tested positive. I have 3 days to...

I am on HU for ET , have increased dose recently by one 500 so am on 8 a week. I have always taken it at night on advice received when starting it some 4 years...

Anyone else have tear drop shaped red cells? Went to a new MPN specialist last week. She did a blood smear which I hadn’t had in years. Apparently I have a...

How do we treat inflammation ! ?

I'm 74 with ET JAK 2 , I also have Arthritis in my hips. My Physiotherapist advised using a Pain relieving gel - but I said they contain Ibuprofen and I'm not...

Well here I am 21days post transplant and I’m HOME! It’s only 3 days but it’s so good to be back in normal surroundings. Already been back to Addenbrookes for...

Hello everyone. I'm 46 with ET been on peg for 15 weeks now (90 mg weekly) numbers show very small decline. Is that usual? Also I've started itching- insanely...

I just had to change from Pegasys due to too many side effects, and was put on Jakafi. My question is does 15 mg. twice a day for a woman that is 110 lbs. seem...

I’ve been prescribed Momelitinib today, as expected. I had to sign I’d been informed of all the possible side effects. I was, in a way, looking forward to...

My hematologist decided he would see his patients every 3rd visit. So since I only go twice a year, that means I won’t see him but every other year. This...

Well here I am 15 days post transplant!!! Headaches, stomach cramps, diarrhoea, sore throat. These are all under control with various drugs and even a...

As it says in the title. I followed all the instructions, came off my warfarin and did the heparin injections, got to the hospital and no one had read my...

I m a bit underwhelmed with my specialist as he is very vague about everything. Gave me a script for aspirin 100mg once a day. Suggested I do a blood test...

I sent this note to my MPN Specialist and local hematologist. My most recent CBC at the PCP 09/06/24 shows HCT=46.2 HGB=14.7. The CBC at my local...

I wonder how low the supplies of Interferon are getting now. My prescription was short last time and today I went to collect again (Interferon 135) and it...

Hi to everyone who reads this, Just thought I’d let you know that am finally in Addenbrookes hospital having chemo as we speak. Had a Hickman line fitted...

I was diagnosed with essential thrombocythemia 25yr ago. I was put on interferon which worked with no side effects. My oncologist then put me on Hydrea and...

My hematologist's office told me I could not take ibuprofen. Only tylenol. I am curious if you all have been told that, and if so, what do you use for pain...

Hi, I have mf and take pegysys and low dose asprin. I have been suffering with lower right back pain, have seen a physio who said is is sacroiliac joint pain...

Has anyone heard from Otterfield? Her name is Jennie and she had a SCT about a year and a half ago. She was very active on this sight until she had the...

The day finally arrived. “Thursday 15th August 2024” After breakfast and my bed changed, I was hooked up to my lovely pink trollied pump. Pre-meds of...

I’ve had ET+Jak2 for 9 years and have tolerated Hydroxy plus asprin quite well. I’ve always had low blood pressure but was diagnosed with high blood pressure...

I have ET and am on hydroxycarbamide. I have rosacea and I am having difficulty with sun creams on my face I seem always to get a reaction in one area. My...

I’m wondering how many of you knew that neuropathy a listed side effect of Hydroxycarbamide . Also bilateral field vision is a listed side effect. If anyone...