Posts - MPN Voice | HealthUnlocked

MPN Voice

10,784 members • 14,980 posts

All posts for July 2024

Sore feet

Hi does anyone suffer from a burning sensation in ther feet it's not all the time as it comes and goes feet are not swollen but are just stinging and burning...

Hi does anyone suffer from a burning sensation in ther feet it's not all the tim...

VTAR24

•3 months ago

10 Replies

Besremi Update

I have been on Besremi since May 2023, now consistently at 500 mcg. So far it has brought my platelets under control where they have remained 200-300...

I have been on Besremi since May 2023, now consistently at 500 mcg. So far it ...

Luthorville

•3 months ago

24 Replies

ET symptoms

I was diagnosed with essential thrombosis in 2019. I had a bloody Marrow biopsy. And came back positive for the Jack2 mutation. My platelet count has been...

I was diagnosed with essential thrombosis in 2019. I had a bloody Marrow biopsy...

03271115

•3 months ago

8 Replies

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Insect bites

I have had a few mosquitoes bites lately and I have never experienced such discomfort with hitching. Wondering if hydroxycarbamide has anything to do with...

I have had a few mosquitoes bites lately and I have never experienced such disco...

Cokopops

•3 months ago

12 Replies

PV and common Cold

Morning all, Only diagnosed with PV since Nov 23. Low risk as im 38 and platelets have stopped increasing since the introduction of aspirin and a few other for...

Morning all, Only diagnosed with PV since Nov 23. Low risk as im 38 and platelet...

Headaball

•3 months ago

9 Replies

Pegasys skin?

Has anyone else had their skin turn into rough, dry, chicken skin on large parts of their bodies after taking Pegasys? Mine started out with itchiness, and now...

Has anyone else had their skin turn into rough, dry, chicken skin on large parts...

dogsandhorses

•3 months ago

8 Replies

post deleted

I have deleted my post as was not getting any help

130396

•3 months ago

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Muscle pain

Good morning. I am getting pretty debilitating muscle pain in my core - around my groin and up above. I think maybe these are my rectus abdominis muscles. It’s...

Good morning. I am getting pretty debilitating muscle pain in my core - around m...

Huginn

•3 months ago

13 Replies

Interferon and skin

I have been on Interferon for a few years but over the last 2 my skin is suffering, loads of dry and itchy skin, anyone else having similar issues?

I have been on Interferon for a few years but over the last 2 my skin is sufferi...

shiftzz

•3 months ago

5 Replies

BMB ordeal

Maybe things are different in the UK but when my hematologist wanted to do the bmb in office I refused -having had prior experience with biopsies I knew the...

Maybe things are different in the UK but when my hematologist wanted to do the b...

Wendrew

•3 months ago

11 Replies

SCT journey update No.4

Hi all, just to give you an update on my journey towards my *Allogenic Stem cell Transplant. Last tests @ Addenbrookes yesterday, was a very early start as...

Hi all, just to give you an update on my journey towards my *Allogenic Stem cell...

LFCLove

•3 months ago

19 Replies

Central point

Am I pipe dreaming or can we get a central point for hospitals doctors dentists. Dentists because I was on tablets for 11 years and they dissolved some of my...

Am I pipe dreaming or can we get a central point for hospitals doctors dentists...

mag123ben

•3 months ago

4 Replies

LOW IRON, Platelets AND PV

I am a 73 female, English but living in New Zealand for some months each year. I was diagnosed in May 24 with PV after a positive JAK 2 test. (Hb 164 and HCT...

I am a 73 female, English but living in New Zealand for some months each year. I...

Hilary777

•3 months ago

11 Replies

Medical exemption certificate in the U.K.

Hello lovely people. I am curious as to whether others with an MPN in the U.K. are eligible for a Medical Exemption Certificate? I am 55 and I have ET CALR,...

Hello lovely people. I am curious as to whether others with an MPN in the U.K. a...

Happysnapper

•3 months ago

10 Replies

Bone marrow biopsy

Hi, hope you are all keeping well. I am Jak 2 on Hydroxycarbamide for the past 10months. My platelets were down to 475 but my last blood test showed they were...

Hi, hope you are all keeping well. I am Jak 2 on Hydroxycarbamide for the past 1...

Lilbert

•3 months ago

41 Replies

Update High Platelets - Thoughts Please….?

Hi Everyone, I’ve been documenting my story on here both for advice for myself and also for others to follow should they be in a similar situation…. Quick...

Hi Everyone, I’ve been documenting my story on here both for advice for myself a...

Purdy13

•3 months ago

23 Replies

Who to complain to !

We should all get together and complain. Or am I still in a mood and should be good to take it. My daughter isn't well but she's my carer and drives her car ....

We should all get together and complain. Or am I still in a mood and should be g...

mag123ben

•3 months ago

10 Replies

After 3 o/clock

Such hassle , chemist can't get prescription, even though I was told on Monday to get them from chemist. Rang surgery,Secretary had me in tears, said I never...

Such hassle , chemist can't get prescription, even though I was told on Monday t...

mag123ben

•3 months ago

12 Replies

Blood test results.

Had routine bloods taken for hospital and dr.surgery. results from hospital going right way.. and to get more tablets from Dr .Surgery reception said to get...

Had routine bloods taken for hospital and dr.surgery. results from hospital goin...

mag123ben

•3 months ago

5 Replies

inactivity

Can anyone tell me what causes the "inactivity" related to ET? Is it the JAK2 mutation, the ET itself, or is it the hydroxyurea that I take that causes it?...

Can anyone tell me what causes the "inactivity" related to ET? Is it the JAK2 m...

johnnyjumpups

•3 months ago

8 Replies

Time to go to transplant

Yesterday, my MPN specialist recommended that it's time to do a transplant. Even though I'm only intermediate-1 post-ET MF (CALR, ASXL1) and generally...

Yesterday, my MPN specialist recommended that it's time to do a transplant. Eve...

Hatchie

•3 months ago

27 Replies

Update

I finally got hold of someone in the clinic today, explained I was concerned about the sudden appearance of blasts in my blood count, she said she would have a...

I finally got hold of someone in the clinic today, explained I was concerned abo...

lizzziep

•3 months ago

6 Replies

A month into Pegasys, Australia …

An Update 😃 Now a couple of weeks later and all is well. I saw my haematologist and we were both surprised and encouraged to see that my platelets had gone...

An Update 😃 Now a couple of weeks later and all is well. I saw my haematologis...

Pachena

•3 months ago

17 Replies

Taking extra Hydrea on weekends

Hi all, Hope everybody is keeping as well as possible and you can enjoy the summer days, even with the strange weather this year :) Personally, I have been...

Hi all, Hope everybody is keeping as well as possible and you can enjoy the summ...

JustKeepSw1mming

•3 months ago

27 Replies

Pegasys approved for PV and ET in Europe, Good news?

https://www.ema.europa.eu/en/medicines/human/variation/pegasys It looks like Pegasys has been approved by the European EMA for treating PV and ET. Although...

https://www.ema.europa.eu/en/medicines/human/variation/pegasys It looks like Pe...

SamHathaway1800

•3 months ago

6 Replies

PV - HU vs Jakafai, Insurance Denied Jakafai

So I've been on Peg IFN for close to 5 years and my body can't seem to tolerate it anymore. My white counts just keep going lower. Current counts at...

So I've been on Peg IFN for close to 5 years and my body can't seem to tolerate ...

jon1972

•3 months ago

12 Replies

Besremi

I have Polycythamy vera.Now I have high hemoglobin.7,28.Hematocrit is slightly increased-50.8PLT 420.But Leukozyten are increasing all the time.WBC was...

I have Polycythamy vera.Now I have high hemoglobin.7,28.Hematocrit is slightly i...

bolonka

•3 months ago

2 Replies

stomach ulcer

I have written here recently that I have ET/ Jak2 and am showing signs of progressing to PV. I got a phlebotomy about a month ago and since then have...

I have written here recently that I have ET/ Jak2 and am showing signs of progre...

Auggie17

•3 months ago

7 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

•3 months ago

6 Replies

JAK2 results

HiHoping someone may know the answer to this as I do not have appt till Aug to ask. When I was first diagnosed with PV in June 22 and had first JAK2 Bloods...

HiHoping someone may know the answer to this as I do not have appt till Aug to a...

Cityreach

•3 months ago

10 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2024

Sore feet

Besremi Update

ET symptoms

Insect bites

PV and common Cold

Pegasys skin?

post deleted

Muscle pain

Interferon and skin

BMB ordeal

SCT journey update No.4

Central point

LOW IRON, Platelets AND PV

Medical exemption certificate in the U.K.

Bone marrow biopsy

Update High Platelets - Thoughts Please….?

Who to complain to !

After 3 o/clock

Blood test results.

inactivity

Time to go to transplant

Update

A month into Pegasys, Australia …

Taking extra Hydrea on weekends

Pegasys approved for PV and ET in Europe, Good news?

PV - HU vs Jakafai, Insurance Denied Jakafai

Besremi

stomach ulcer

Cold hands and feet!

JAK2 results

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