Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for March 2019

Hydroxyurea with iron supplements

Hi everyone, is it okay to take Hydroxyurea together with iron supplements? Thanks

Hi everyone, is it okay to take Hydroxyurea together with iron supplements? Than...

Gringz_

•5 years ago

7 Replies

for oyhers with cranium

looking for any persons with cranium changes, young and old.

scott3fal2

•5 years ago

Be the first to reply

Red painful swelling hands

The palms of my hands are always bright red and throb and very itchy any body get painfull red hands I've ET

The palms of my hands are always bright red and throb and very itchy any body ge...

Hahag

•5 years ago

4 Replies

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Some Good News!!!

Hi Everyone! Today i had appointment with my hematologist and i just received a word from my doctor saying that "Its impossible that u have PV" the CBC reports...

Hi Everyone! Today i had appointment with my hematologist and i just received a ...

Vigiindia

•5 years ago

25 Replies

Overheating

Does anyone else with ET get very hot and sweaty even when the temperature is low, inside or outside. I seem to be getting worse, even thinking of cutting my...

Does anyone else with ET get very hot and sweaty even when the temperature is lo...

Hydrox

•5 years ago

11 Replies

Itch skin

Hydroxy and itchy skin I was put on these a few weeks ago but got taken off it due to me having severe itchy skin and what felt like electrical prickly heat...

Hydroxy and itchy skin I was put on these a few weeks ago but got taken off it d...

Hahag

•5 years ago

6 Replies

So... this is new. Question on shortness of breath

Hi all -- I have ET (about 2 years since diagnosis) and up to a month ago, the most challenging symptom I've had to deal with is the dreaded fatigue. But all...

Hi all -- I have ET (about 2 years since diagnosis) and up to a month ago, the m...

ksos

•5 years ago

32 Replies

Myelofibrosis patient experience talk -I'd like to do one at the Oxford Forum on 24th April

Hi I was diagnosed with MF early in 2017, and found this group[ almost immediately. I've posted on it, and replied to posts (especially from newcomers, who...

Hi I was diagnosed with MF early in 2017, and found this group[ almost immediat...

Rachelthepotter

•5 years ago

16 Replies

Pegasys

Hi just asking for some advice I have been on pegasys for 9mths now and on the whole have had very little problems with side effects etc. It has normalised my...

Hi just asking for some advice I have been on pegasys for 9mths now and on the w...

Poppy112

•5 years ago

6 Replies

Pegasys struggles..any tips?

Hi All 48 and diagnosed with ET (mpl mutation) after a routine blood test 10+ years ago. Platelets average around the 720 mark and on daily aspirin until I had...

Hi All 48 and diagnosed with ET (mpl mutation) after a routine blood test 10+ ye...

Crofty7

•5 years ago

30 Replies

Polycythemia Symptoms

I am 62 years old and recently told I have Polycythemia however I do not have any symptoms. I do not have joint pain, itching, fatigue, shortness of breath,...

I am 62 years old and recently told I have Polycythemia however I do not have an...

4beatles

•5 years ago

15 Replies

ET uk

Why does the rest of the world say ET is a cancer, when the UK says it is not.

Hydrox

•5 years ago

22 Replies

Juat diagnosed a few days ago..

Hi all. I will explain what I have been told so far, it's not a lot, and see if anyone can give some hints and tips! I am 38 and suffered a heart attack when I...

Hi all. I will explain what I have been told so far, it's not a lot, and see if ...

Kesslerkev2711

•5 years ago

20 Replies

Now Experiencing High WBC

Hi Everyone, Almost 2.5 months after phlebotomy, everything seems okays, but last CBC quite doubtful which shows wbc slightly higher. But RBC,HB,PCV is great!...

Hi Everyone, Almost 2.5 months after phlebotomy, everything seems okays, but las...

Vigiindia

•5 years ago

4 Replies

Et

Does anyone else with ET have balance problems?

Hydrox

•5 years ago

21 Replies

Feeling low and fed up

I have now been suffering with persistent headaches for nearly 4 weeks or their abouts to the point were for the first time in a very long time it feels like...

I have now been suffering with persistent headaches for nearly 4 weeks or their ...

Tico

•5 years ago

37 Replies

Proton Pump Inhibitors and Fibrosis

Does anyone know anything about proton pump inhibitors and their usage in treating Idiopathic Fibrosis or osteopetrosis? (to be clear, I do NOT mean...

Does anyone know anything about proton pump inhibitors and their usage in treati...

Osteomyelio

•5 years ago

1 Reply

Health issues

My 55 yrs I have COPD Stage 4 cirrohsis Enlarged spleen Low platelet 62 Lupas Looking for advise

My 55 yrs I have COPD Stage 4 cirrohsis Enlarged spleen Low platelet 62 Lupas L...

Mommy63

•5 years ago

3 Replies

Mislaid some Hydrea

Hello I was counting my chemo tablets to see if I had enough for my next appointment. I have 3 floors in my home. So sometimes I leave some in my bedroom....

Hello I was counting my chemo tablets to see if I had enough for my next appoint...

Helena303

•5 years ago

4 Replies

Vision Problems

Does anyone know what, physiology, causes visual disturbances with PV? The bluriness comes and goes, but it is quite intense at times. I wear corrective...

Does anyone know what, physiology, causes visual disturbances with PV? The blur...

BluePeony

•5 years ago

19 Replies

Question for MF patients

A question for you who have MF. Do you know what your blast % is in your peripheral blood? Mine was 0 for a few months and two weeks ago was 1%. Today was 2%....

A question for you who have MF. Do you know what your blast % is in your periphe...

ccsial

•5 years ago

9 Replies

Platelet count

My platelet count was 62 during a CBC Is that dangerous

Mommy63

•5 years ago

3 Replies

ET and blast cells - new here and overwhelmed

Hi there My husband is 32, and has just been diagnosed with ET (negative for JAK2, CALR, MPL and BCR ABL) and we are waiting on further info. His platelet...

Hi there My husband is 32, and has just been diagnosed with ET (negative for JA...

intothewoods

•5 years ago

13 Replies

Niggling feeling

Firstly I will apologise for the long post! I was diagnosed back in May last year with MF Calr type 1 symptomatic without enlarged spleen and was started on...

Firstly I will apologise for the long post! I was diagnosed back in May last yea...

Graham7694

•5 years ago

16 Replies

Blood transfusion with PV

As a precautionary measure before having an endoscopy I was asked if I was OK to have a blood transfusion. I presume having PV does not preclude me ?

As a precautionary measure before having an endoscopy I was asked if I was OK to...

Victor_Pendlebury

•5 years ago

3 Replies

NUTRIENT trial?

Hello! Does anyone know what’s happening with the Nutrient trial now? The page about it on the MPN Research Foundation website just says ‘FINAL ANALYSIS HAS...

Hello! Does anyone know what’s happening with the Nutrient trial now? The page a...

LucyGeering

•5 years ago

12 Replies

Anagrelide and heart issues

Three or four months into taking Anagrelide I developed heart failure symptoms. Has anyone else experienced or heard of this and should the symptoms be...

Three or four months into taking Anagrelide I developed heart failure symptoms. ...

Hidden

•5 years ago

10 Replies

Anyone have ET diagnosis with normal BMB

I've posted a few times and still in no man's land (hopefully it will get better on my second haem appointment on 22nd). So far: ET possible - no secondary...

I've posted a few times and still in no man's land (hopefully it will get better...

RedSunrise

•5 years ago

28 Replies

MPD

Hello dear friends, I'm suffering from Neuropathy and Polycythemia( Not sure about type) My Jak2 was -ve so doctor not said for another test still. My doctor...

Hello dear friends, I'm suffering from Neuropathy and Polycythemia( Not sure a...

Ethicalthinker

•5 years ago

11 Replies

Erythropoietin injections

Does anyone have experience or advice about erythropoietin injections? My husband has post PV Myelofibrosis and is taking Ruxolitinib. His hgb is drifting...

Does anyone have experience or advice about erythropoietin injections? My husba...

Fika500

•5 years ago

18 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2019

Hydroxyurea with iron supplements

for oyhers with cranium

Red painful swelling hands

Some Good News!!!

Overheating

Itch skin

So... this is new. Question on shortness of breath

Myelofibrosis patient experience talk -I'd like to do one at the Oxford Forum on 24th April

Pegasys

Pegasys struggles..any tips?

Polycythemia Symptoms

ET uk

Juat diagnosed a few days ago..

Now Experiencing High WBC

Et

Feeling low and fed up

Proton Pump Inhibitors and Fibrosis

Health issues

Mislaid some Hydrea

Vision Problems

Question for MF patients

Platelet count

ET and blast cells - new here and overwhelmed

Niggling feeling

Blood transfusion with PV

NUTRIENT trial?

Anagrelide and heart issues

Anyone have ET diagnosis with normal BMB

MPD

Erythropoietin injections

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