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Does anyone else suffer bradycardia?

I have primary myelofibrosis (diagnosed March 2024) and am still learning what is and what isn’t associated with it. My resting heart rate is between 43-50...

I have primary myelofibrosis (diagnosed March 2024) and am still learning what i...

Scambria

•18 days ago

12 Replies

Symptoms after stopping Interferon?

I have ET with JAK2 mutation. With the shortage of Pegylated Interferon my Haematologist stopped giving me any medication except for Clopidogrel. My last...

I have ET with JAK2 mutation. With the shortage of Pegylated Interferon my Haem...

AnitaJ

•3 months ago

11 Replies

Cataracts/ET

Hi, does anyone know if having ET +JAK2 can contribute to getting cataracts? Had sight test at weekend & was informed sight has changed a lot & that I now...

Hi, does anyone know if having ET +JAK2 can contribute to getting cataracts? H...

micky10

•4 months ago

2 Replies

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Make a new post. Review the details of my diagnosis of ET Is the age of patients with ET trending younger?

I'm graduating from college this year. In the first half of 2020, the physical examination and blood test of the university admission exam were normal, and...

I'm graduating from college this year. In the first half of 2020, the physical...

1iquid

•4 months ago

2 Replies

PV, Besremi, and bone pain--or injury?

I am a 66 year old who was diagnosed with ET then PV just as I entered Medicare age here in the US. I take a low dose of Besremi to keep platelets and HCT...

I am a 66 year old who was diagnosed with ET then PV just as I entered Medicare ...

Ovidess

•6 months ago

6 Replies

Cold hands and feet!

Hi, I have been suffering from extremely cold hands and feet from long before I was diagnosed last year. Anyone else have the same symptom relating to ET JAK2?

Hi, I have been suffering from extremely cold hands and feet from long before I ...

ArchieCatPurr

•9 months ago

6 Replies

issues with Peg

Hi all I’ve had a few issues with Peg. Breathing changes & now sore throat which feels like a lump & uncomfortable ( hard to explain) Anyone experienced...

Hi all I’ve had a few issues with Peg. Breathing changes & now sore throat whic...

Mich10

•11 months ago

16 Replies

Strokes, ET, treatment options

Dear All, I’m a 37-year-old male. Two and a half years ago, I suffered a stroke. At that time, in the emergency room, my platelet counts were 844, 698, and...

Dear All, I’m a 37-year-old male. Two and a half years ago, I suffered a stroke...

sandor13

•11 months ago

18 Replies

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 year 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

•1 year 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

•1 year ago

7 Replies

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

•2 years 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

•2 years 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

•2 years 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

•2 years 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

•2 years 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

•2 years ago

1 Reply

low platelets

low platelet issue after receiving covid vaccines

NJ-mama

•2 years 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

•2 years 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

•3 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

•3 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

•4 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

•4 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

•4 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

•4 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

•4 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

•4 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

•4 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

•4 years ago

10 Replies

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Posts - MPN Voice | HealthUnlocked

MPN Voice

Symptoms - MPNs posts

Does anyone else suffer bradycardia?

Symptoms after stopping Interferon?

Cataracts/ET

Make a new post. Review the details of my diagnosis of ET Is the age of patients with ET trending younger?

PV, Besremi, and bone pain--or injury?

Cold hands and feet!

issues with Peg

Strokes, ET, treatment options

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

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