Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,730 posts

All posts for September 2018

Worst 48 hours ever

Hi everyone I am currently on the jakafi trial for ET at guys and have Been feeling unwell for about a week headaches and sore shoulder, two days ago my wife...

Hi everyone I am currently on the jakafi trial for ET at guys and have Been feel...

Rastavapa

•6 years ago

20 Replies

MPN EXPERTS IN THE EAST MIDLANDS ???

Good evening to you all .. just thought I'd ask if anyone is aware of wether there are any expert Mpn doctors in & around the Midlands in the uk ?? Thanks in...

Good evening to you all .. just thought I'd ask if anyone is aware of wether the...

nightssky

•6 years ago

4 Replies

Travel insurance

Can any of my UK MPN people recommend a good travel insurance company that covers MPN’s. I’m travelling from uk to Denmark with the family in October 😊

Can any of my UK MPN people recommend a good travel insurance company that cover...

SP-2008

•6 years ago

9 Replies

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Bone pain - arthritis or Polycythaemia?

Hi Guys, I just wanted to ask, how many of you, who have PV or another MPN suffer from arthritic like bone pain - best way I can describe it, is toothache but...

Hi Guys, I just wanted to ask, how many of you, who have PV or another MPN suffe...

Aime

•6 years ago

24 Replies

HGB and RBC High Count

Why my HGB and RBC are count high from last 2 years?

Waheed1

•6 years ago

5 Replies

Problems with hydrea?

The last dose of medication my pharmacist gave me was an American produced hydrea, not the the British produced hydroxicarbamide I’ve been taking since I was...

The last dose of medication my pharmacist gave me was an American produced hydre...

janwh

•6 years ago

6 Replies

How does ET fatigue progress?

I've had a pretty bad time of it in terms of fatigue today and that got me wondering... for those of you who have had ET for awhile (five years, ten, twenty )...

I've had a pretty bad time of it in terms of fatigue today and that got me wonde...

ksos

•6 years ago

32 Replies

Hydroxycarbamide or not!

Hello, I am new to Health Unlocked. I was diagnosed with Essential Thrombocythemia in June 5 days before having a Breast Lumpectomy. I have been prescribed...

Hello, I am new to Health Unlocked. I was diagnosed with Essential Thrombocythem...

azaelea

•6 years ago

4 Replies

Burst blood vessel in eye related to ET?

I've had two episodes of a burst blood vessel in my right eye -- where the white part of my eye turns bright red -- in the last two months -- the second one...

I've had two episodes of a burst blood vessel in my right eye -- where the whit...

ksos

•6 years ago

10 Replies

Jak2 Negitive Result

I have a jak2 test negitive what does its mean please help me into this matter.

Waheed1

•6 years ago

8 Replies

BMB recovery

Hi everyone, I had a bone marrow biopsy on Wednesday and am still experiencing a lot of aching every time I walk and put pressure on it. Across my lower back...

Hi everyone, I had a bone marrow biopsy on Wednesday and am still experiencing ...

Elcee253

•6 years ago

20 Replies

Why an Aspirin a day won’t keep the doctor away

Morning all, Has anybody else read the article in the Daily Mail today regarding Aspirin (here I go again) 😤 after my run in with my local CCG, and them not...

Morning all, Has anybody else read the article in the Daily Mail today regarding...

Superwoman

•6 years ago

14 Replies

Hydroxy

Has anyone ever been taken off meds with ET. I am down to one every other day and hopefully will be able to take less then that

Has anyone ever been taken off meds with ET. I am down to one every other day an...

Petsch

•6 years ago

2 Replies

PV & Parkinsons

I have PV (jak2 pos) diagnosed 3 years. I also have Parkinson’s diagnosed 4 years. I never know which symptoms belong to which condition. Anyone else here...

I have PV (jak2 pos) diagnosed 3 years. I also have Parkinson’s diagnosed 4 yea...

Albt4z

•6 years ago

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Shingles with Et

I have Et jak and asked my hemo if I should get shingle shot. Was told yes. Now I’m reading that I shouldn’t because it’s a live vaccine. Losing confidence in...

I have Et jak and asked my hemo if I should get shingle shot. Was told yes. Now ...

Petsch

•6 years ago

1 Reply

Ruxilitinib and leg and foot ulcers

Hi Has anyone on Rux suffered from painful leg and foot ulcers which could be linked to the drug ? Thanks

Hi Has anyone on Rux suffered from painful leg and foot ulcers which could be li...

Wychwoodbabe

•6 years ago

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MF, falling Hb, anaemic, what next?

I am on Ruxo, getting progressively poorer quality of life as my Hb drops to <100 with increased anaemia. Feel light headed, permanently exhausted, my resting...

I am on Ruxo, getting progressively poorer quality of life as my Hb drops to <10...

jane13

•6 years ago

12 Replies

prv with intermittent hot stabbing shooting pains

I get these types of pain intermittent in various body parts including my head not every day & not all day either just pops up now and then could it be related...

I get these types of pain intermittent in various body parts including my head n...

nightssky

•6 years ago

7 Replies

PRV with b12 and folate defeincy ?

Newbie anyone have to take melds to correct either of these conditions running along side PV OR ANY OTHER MPN ?

Newbie anyone have to take melds to correct either of these conditions running a...

nightssky

•6 years ago

10 Replies

newbie 1st appt soon jak2 pos or neg ??

hi all my first haematology appt in about 6 wks my Gp refered me for possible Prv just wondering what will happen if my test comes back neg for the jak2 test...

hi all my first haematology appt in about 6 wks my Gp refered me for possible P...

nightssky

•6 years ago

5 Replies

Polycythemia ..chest pains ?

Hi all anyone get periodic chest cramps 10/15 mins at a time so intense feels like I'm gon pass out ...

Hi all anyone get periodic chest cramps 10/15 mins at a time so intense feels li...

nightssky

•6 years ago

4 Replies

Polycythemia ..Growing pains in legs at night ?

Hi all Any one else get awful growing pains in the legs they come on in the evening and last the whole night long I get them every now and then ..thought I...

Hi all Any one else get awful growing pains in the legs they come on in the eve...

nightssky

•6 years ago

4 Replies

polycythemia what foods or supplements should we Avoid ?

polycythemia Vera , b12 ,folate , vit c , soya products

nightssky

•6 years ago

2 Replies

polycythemia .. what foods or supplements To Avoid ?

Hi all any input on what foods or supplements should we be avoiding ?

nightssky

•6 years ago

2 Replies

Slow healing from ET or Hydrea??

Hi. Am wondering if anyone knows if our bodies heal more slowly from injuries because Hydroxyurea or ET? I seem to be taking a long time to recover from...

Hi. Am wondering if anyone knows if our bodies heal more slowly from injuries be...

katiewalsh

•6 years ago

16 Replies

Flu jab

Does anyone know if it is ok to have this year's flu jab as I understand it is different to last year's?

Does anyone know if it is ok to have this year's flu jab as I understand it is d...

nivana

•6 years ago

15 Replies

Suspected Pv gp referral to haematology

hello all I'm a newbie just wanted to no how long you guys had to wait before you had your first appt with a haemoolgist ... what's a typical waiting time ? &...

hello all I'm a newbie just wanted to no how long you guys had to wait before yo...

nightssky

•6 years ago

26 Replies

Of interest to anyone using/considering Peg/INF

https://link.springer.com/article/10.1007%2Fs00281-018-0700-2 Very detailed up to date summary of INFs albeit mostly beyond my pay grade. I thought encouraging...

https://link.springer.com/article/10.1007%2Fs00281-018-0700-2 Very detailed up t...

Paul123456

•6 years ago

6 Replies

polycythemia Vera

hello I'm new to the community and just learned from my go who suspects I have polycythemia Vera been waiting now for my appt with a haematologist to look for...

hello I'm new to the community and just learned from my go who suspects I have p...

nightssky

•6 years ago

31 Replies

Terrible itching

Hi all, For the last two weeks,I have terrible irresistible kind of itching in my thighs and only happens when I go to sleep.It is so worse that it is causing...

Hi all, For the last two weeks,I have terrible irresistible kind of itching in m...

Hidden

•6 years ago

22 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2018

Worst 48 hours ever

MPN EXPERTS IN THE EAST MIDLANDS ???

Travel insurance

Bone pain - arthritis or Polycythaemia?

HGB and RBC High Count

Problems with hydrea?

How does ET fatigue progress?

Hydroxycarbamide or not!

Burst blood vessel in eye related to ET?

Jak2 Negitive Result

BMB recovery

Why an Aspirin a day won’t keep the doctor away

Hydroxy

PV & Parkinsons

Shingles with Et

Ruxilitinib and leg and foot ulcers

MF, falling Hb, anaemic, what next?

prv with intermittent hot stabbing shooting pains

PRV with b12 and folate defeincy ?

newbie 1st appt soon jak2 pos or neg ??

Polycythemia ..chest pains ?

Polycythemia ..Growing pains in legs at night ?

polycythemia what foods or supplements should we Avoid ?

polycythemia .. what foods or supplements To Avoid ?

Slow healing from ET or Hydrea??

Flu jab

Suspected Pv gp referral to haematology

Of interest to anyone using/considering Peg/INF

polycythemia Vera

Terrible itching

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