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MPN Voice

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Haemachromatosis?

Hello. Just had most recent set of blood results and appointment with Haematologist today. Everything seemed to be normal re platelets, neutrophils,...

Hello. Just had most recent set of blood results and appointment with Haematolog...

Shanders

•1 month ago

2 Replies

Other PV People's average dose of Peginterferon Alpha-2a?

Hi All, A brief overview of me, I was diagnosed with JAK2 & PV in November after being hospitalized with a clot in my splenic vein. I'm now having treatment...

Hi All, A brief overview of me, I was diagnosed with JAK2 & PV in November afte...

PVKween

•2 months ago

14 Replies

have you had trouble getting approved for stem cell transplant?

I have had a wild ride last year beginning with a sudden decline in weight from 240 lbs - 165 lbs. accompanying the weight loss has also been an...

I have had a wild ride last year beginning with a sudden decline in weigh...

Plasmapool

•4 months ago

7 Replies

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cold legs

Hi all, after a long time just trying to get rid of PV problems. However, my GP has now recommended a vascular surgeon. She did not give me any names, so I...

Hi all, after a long time just trying to get rid of PV problems. However, my GP...

monnywese

•9 months ago

7 Replies

left hand and arm, cold and painful

good afternoon everyone was wondering if anyone else experienced this my left hand and arm were ice cold even under a sweater and very painful and fingers and...

good afternoon everyone was wondering if anyone else experienced this my left h...

Nc3500

•10 months ago

6 Replies

Just a vent post. And future anxiety

I'm a young person with mpn. Some days are good some days aren't. I keep thinking abt the risk of progression of the disease. As a person who is a medicine and...

I'm a young person with mpn. Some days are good some days aren't. I keep thinkin...

Xuzy

•1 year ago

19 Replies

contact urticaria

hi, does anybody have any experience of contact urticaria or any effective treatment? I have PV and my symptoms are skin itchiness after shower but also when...

hi, does anybody have any experience of contact urticaria or any effective treat...

STK52

•1 year ago

11 Replies

ET-related sleep issues - waking up hot

Hi all, I wanted to know if anyone has had any similar experiences with interrupted sleep? For the past month, I have been waking up in the middle of the...

Hi all, I wanted to know if anyone has had any similar experiences with interru...

ET_Gooner

•1 year ago

28 Replies

essential, thrombocythemia transformation

has any one you know had leukemic transformation from having essential turn thrombocythemia

has any one you know had leukemic transformation from having essential turn th...

Meeileem

•1 year ago

1 Reply

low platelets

low platelet issue after receiving covid vaccines

NJ-mama

•1 year ago

3 Replies

Do you blame your fatigue and brain fog more on hydroxyurea or ET (high platelet count)... which one and why?

Do you blame your fatigue and brain fog more on hydroxyurea or ET (high-platelet count)... which one and why? Hi I'm just starting on this site. I'm trying to...

Do you blame your fatigue and brain fog more on hydroxyurea or ET (high-platelet...

industrial

•1 year ago

9 Replies

Unable to work

This is a long post. I am just looking for answers and maybe someone here has had something similar: I have ET and I had an episode on September 19th while at...

This is a long post. I am just looking for answers and maybe someone here has ha...

Ssssfamily

•2 years ago

27 Replies

Symptoms

I got a nummular headache six days after the second Moderno booster vaccine. I am wondering if it was from the vaccine or the fact that I was starting with...

I got a nummular headache six days after the second Moderno booster vaccine. ...

Winchie

•2 years ago

2 Replies

Night Sweats

Hi everyone, I am looking for some feedback on night sweats. 42 years old (live in Ireland), diagnosed with ET in 2017, progressed to MF in 2020. Been having...

Hi everyone, I am looking for some feedback on night sweats. 42 years old (live ...

Navy12

•3 years ago

3 Replies

Splenomegaly after taking Pegasys

I cannot find answers to so many things related to MPNs online. I really appreciate having this community. Just a quick question for any of you Pegasys...

I cannot find answers to so many things related to MPNs online. I really appre...

Emmyroos

•3 years ago

9 Replies

Ruxolitinib and Anaemia

I'm struggling with heavy anaemia and very very low platelets after four months of Ruxolitinib. It's not pleasant at all, and I need blood transfusions every...

I'm struggling with heavy anaemia and very very low platelets after four months ...

RobinBrum

•3 years ago

11 Replies

Jak2 positive but I'm healthy

Hello, I've got my test results last week and it says Jak2 Mutation tested, may platelets from 700+ goes to 1300+ last time but I'm on my period then I don't...

Hello, I've got my test results last week and it says Jak2 Mutation tested, may ...

livelovelaugh1992

•3 years ago

14 Replies

Early symptoms have vanished

I am almost 2 months into my treatment for ET on Hydra. Initially 500/day for the first 2 weeks, and since then it's been 1000mg 4 days and 500 mg 3 days of...

I am almost 2 months into my treatment for ET on Hydra. Initially 500/day for th...

Hidden

•3 years ago

3 Replies

Turmeric supplement

Hi, I have decided to start taking a Turmeric supplement in my never ending quest to alleviate itching' and have bought a box of "ultra turmeric with black...

Hi, I have decided to start taking a Turmeric supplement in my never ending que...

JP1952

•3 years ago

16 Replies

Chronic unexplained nausea

Hello, Can anyone help? Basically I have been suffering with Chronic Nausea for 5 years, I have had blood tests, stool tests, two endoscopies and seen two...

Hello, Can anyone help? Basically I have been suffering with Chronic Nausea f...

fellingham9_3

•3 years ago

10 Replies

Headaches every day

Greetings fellow ET sufferers. I was started on hydroxycarbamide 500mg about a month ago...no problems on that dose. About 2 weeks ago the specialist increased...

Greetings fellow ET sufferers. I was started on hydroxycarbamide 500mg about a m...

Hidden

•3 years ago

14 Replies

Symptoms and Progression

My husband was diagnosed with Jak2+ ET in 2018. He was 52. He was hospitalized with purple toe syndrome and blockage of marjor artery in his leg. He had...

My husband was diagnosed with Jak2+ ET in 2018. He was 52. He was hospitalized w...

yoshimoto

•3 years ago

10 Replies

Do symptoms of ET abate with treatment?

Does the medication help with the fatigue or is that just going to be an ongoing issue? I was just diagnosed with ET with the JAK2 mutation 2 days ago. When I...

Does the medication help with the fatigue or is that just going to be an ongoing...

nightshadow

•3 years ago

20 Replies

Update on MPN Status and other items

The results of the MPN Myeloid Panel are in. The good news is that I am negative for all of the non-driver MPN-related gene mutations (see list below). They...

The results of the MPN Myeloid Panel are in. The good news is that I am negativ...

hunter5582

•3 years ago

44 Replies

Jakafi and Tinnitus

I have developed Tinnitus in both ears in the years I have been taking Jakafi. My red cell count is well controlled, so I don't think it is related to PV....

I have developed Tinnitus in both ears in the years I have been taking Jakafi. ...

Psteuer

•3 years ago

6 Replies

Supplements

Seen a lot of posts by people with all kinds of side effects from this disease so I just thought I’d put this out here in case someone can benefit from it -...

Seen a lot of posts by people with all kinds of side effects from this disease s...

Handysmurf

•4 years ago

12 Replies

Advice Please? Possible ET?

Hi there, Just looking for some advice if anyone can offer any! I am a 27yo female with no diagnosed health concerns. About a year ago I visited my GP as I...

Hi there, Just looking for some advice if anyone can offer any! I am a 27yo fem...

BigWorrier23

•4 years ago

22 Replies

Night sweats and EM

Hey all . I am new here. I "supposedly" have PV. all the symptoms, BMB appeared normal. Awaiting the Mutation/ tests for Jak2 and so on. My question does...

Hey all . I am new here. I "supposedly" have PV. all the symptoms, BMB appeared ...

Fitness77

•4 years ago

4 Replies

Hashimoto's and PV

Hello, I am looking for information about autoimmune diseases like Hashimoto's disease, celiac one, etc and mieloproliferative syndromes and in special...

Hello, I am looking for information about autoimmune diseases like Hashimoto's d...

SoledadBarcelona

•4 years ago

4 Replies

Symptoms with platelet count ~500?

Hi, everyone....I'm new here and this is my first post. My platelets have climbed from 450 in September to 540 recently. I hadn't had a CBC done for a couple...

Hi, everyone....I'm new here and this is my first post. My platelets have climb...

blue_reader

•4 years ago

36 Replies

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Posts - MPN Voice | HealthUnlocked

MPN Voice

Symptoms - MPNs posts

Haemachromatosis?

Other PV People's average dose of Peginterferon Alpha-2a?

have you had trouble getting approved for stem cell transplant?

cold legs

left hand and arm, cold and painful

Just a vent post. And future anxiety

contact urticaria

ET-related sleep issues - waking up hot

essential, thrombocythemia transformation

low platelets

Do you blame your fatigue and brain fog more on hydroxyurea or ET (high platelet count)... which one and why?

Unable to work

Symptoms

Night Sweats

Splenomegaly after taking Pegasys

Ruxolitinib and Anaemia

Jak2 positive but I'm healthy

Early symptoms have vanished

Turmeric supplement

Chronic unexplained nausea

Headaches every day

Symptoms and Progression

Do symptoms of ET abate with treatment?

Update on MPN Status and other items

Jakafi and Tinnitus

Supplements

Advice Please? Possible ET?

Night sweats and EM

Hashimoto's and PV

Symptoms with platelet count ~500?

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