Posts - MPN Voice | HealthUnlocked

MPN Voice

10,784 members • 14,980 posts

All posts for August 2024

Hydroxycarbamide numbness

I’ve been on Hydroxycarbamide for 10 years now for ET JAK2+. For a few years I’ve had tingling in my legs and feet. However , they don’t tingle anymore but...

I’ve been on Hydroxycarbamide for 10 years now for ET JAK2+. For a few years I...

•2 months ago

Haematology

I have been having tests now for months for mpn all my appointments have been done over the phone I got home today to find a letter telling me I have a face to...

I have been having tests now for months for mpn all my appointments have been do...

•2 months ago

Pegasys not working to lower Allele burden

I have Pv. I was diagnosed in 2020 when I was 56. My Allele burden was then 67%. I have been on Pegasys for 1.5 years. I am now at the full 185 mcg due to the...

I have Pv. I was diagnosed in 2020 when I was 56. My Allele burden was then 67%....

•2 months ago

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New Doctor

Hi! I need the list of hemotologists who specialize in Essential Thrombocythemia in the United States. I live in Michigan. I went to my hematologist this...

Hi! I need the list of hemotologists who specialize in Essential Thrombocythemia...

•2 months ago

Correlation between decrease in mutation % and splenomegaly while on Peg-interferon

Hi everyone! My husband has been treated with Peg-interferon for almost 3 years now and while his blood counts normalized, his spleen decreased only slightly...

Hi everyone! My husband has been treated with Peg-interferon for almost 3 years ...

•2 months ago

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Blood clots & flying

55F dx PV JAK2+ in early 2023. Treatment regime is (was) daily low dose aspirin and weekly injections of PEG at 46ish units. To my understanding blood clots...

55F dx PV JAK2+ in early 2023. Treatment regime is (was) daily low dose aspirin ...

•2 months ago

Ruxinitlib

I have been given an option of taking this instead of Pegasys interferon . However I have been advised of the side effects of it and wondered what other...

I have been given an option of taking this instead of Pegasys interferon . Howev...

•2 months ago

ET symptoms

Hi, hoping someone on this forum may be able to assist in obtaining peer reviewed information that states that symptoms are not dependent on platelet counts....

Hi, hoping someone on this forum may be able to assist in obtaining peer reviewe...

•2 months ago

Anyone on Momelotinib/Ojjaara?

Hello all, As I continue on my Jakafi journey, I am relatively happy with my counts, as is my doctor. However, the dreaded weight gain continues. 13...

Hello all, As I continue on my Jakafi journey, I am relatively happy with my...

•2 months ago

Hydroxycarbamide

Hello This may seem a strange question but I am struggling to understand…… if Hydroxycarbamide reduces the amount of blood cells, how does a routine blood...

Hello This may seem a strange question but I am struggling to understand…… if H...

•2 months ago

anxiety

Not really expecting an answer but feeling so anxious at the mo, I do have some life challenges going on at the moment, but this seems to be like riding a...

Not really expecting an answer but feeling so anxious at the mo, I do have some ...

•2 months ago

Fatigue

Is fatigue from PV permanent? Mine has become much worse in the past month. My blood counts are good and iron levels and glucose are at acceptable levels. I...

Is fatigue from PV permanent? Mine has become much worse in the past month. My...

•2 months ago

Update on bone marrow biopsy

Hello everyone. This is just an update on my bone marrow biopsy.. Last time they tried, the local anaesthetic didn't work so I couldn't have it. Today I went...

Hello everyone. This is just an update on my bone marrow biopsy.. Last time they...

•2 months ago

Pruritis

I have had MF for about 5 years and on peginterferon. My itching/tingling was only bad before when I had a bath.but the last few weeks it can be anytime and if...

I have had MF for about 5 years and on peginterferon. My itching/tingling was on...

•2 months ago

Essential Thrombocythemia Jak2

Hi to you, I’m here because my husband has this disease. He is 82 and taking Hydroxycarbomide (I think that’s how it is spelt). This all began to rear it head...

Hi to you, I’m here because my husband has this disease. He is 82 and taking Hy...

•2 months ago

SCT update

It was a year ago today that I had my SCT & am feeling pretty well at the moment. Things were very tough to start with & I wouldn’t have got through it...

It was a year ago today that I had my SCT & am feeling pretty well at the moment...

•2 months ago

Hrt and pegasys. Is it a good idea?

Just wondered what the advice is. My pv is well controlled but hot flushes getting a bit much. I take 90 mcg every fortnight.

Just wondered what the advice is. My pv is well controlled but hot flushes gett...

•2 months ago

Histamine and PV

Hi Everyone, I'm newly diagnosed with PV at the age of 49, and am largely symptom-free at the moment, which I am still surprised by considering my haematocrit...

Hi Everyone, I'm newly diagnosed with PV at the age of 49, and am largely sympt...

•2 months ago

erithromelalgia

hello everyone Does anyone have Erithromelalgia? I only have it in my toes, balls of feet, and in one thumb. At the moment a mix of a paracetamol and half an...

hello everyone Does anyone have Erithromelalgia? I only have it in my toes, ba...

Volunteer•2 months ago

recent diagnosis of EY

i was diagnosed at the end of May with ET had been feeling under the weather for a long while… i put this down to looking after my terminally ill husband, who...

i was diagnosed at the end of May with ET had been feeling under the weather for...

•2 months ago

Referral to Guys/St Thomas's

had my face to face with my haemo consultant last Weds and from what it seems favourable results from my hydroxy drug prescribed dosage. The dosage now being...

had my face to face with my haemo consultant last Weds and from what it seems f...

•2 months ago

Sarcoidosis Peg side effect?

I am 4 months into Pegasys, and after trying to increase my dosage from 45 mcg to 60 mcg per week, I had problems with breathing, coughing, and itching being...

I am 4 months into Pegasys, and after trying to increase my dosage from 45 mcg t...

•2 months ago

Summer COVID free tests ET JAK 2

Thank you so much to everyone for their replies, you are wonderful and I hope you know this. I have been to my local pharmacy and picked up my box of 5 free...

Thank you so much to everyone for their replies, you are wonderful and I hope yo...

•2 months ago

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