Posts - MPN Voice | HealthUnlocked

MPN Voice

10,759 members • 14,920 posts

All posts for September 2024

instow1

dear friends On my last call to hemo nurse I was told though my platelets have come down my white blood cells are low though not criticaly Should I take...

dear friends On my last call to hemo nurse I was told though my platelets have...

•8 days ago

PV & PPI in the UK

Hi all Has anyone successfully purchased Payment Protection Insurance after diagnosis of PV or ET? I have vehicle on finance and just thinking today if I...

Hi all Has anyone successfully purchased Payment Protection Insurance after dia...

•8 days ago

UTIs and primary MF

I have had primary MF for 10 years and have recently commenced Momenlitinib after Ruxolitinib stopped working effectively.Over the last year I have suffered at...

I have had primary MF for 10 years and have recently commenced Momenlitinib afte...

•9 days ago

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Joint pains

Hi all I was wondering if anyone else withET Jak2 suffers with joint pains… My hands are very sensitive as are my feet but recently I’ve had problems with my...

Hi all I was wondering if anyone else withET Jak2 suffers with joint pains… My h...

•9 days ago

Trials of CALR and Jak2 selective agents

There have been posts on both these INCYTE drugs, including INCB160058 for Jak2 posted by member Coffeeglass....

There have been posts on both these INCYTE drugs, including INCB160058 for Jak2 ...

•9 days ago

Newly diagnosed Myelofibrosis

Hello lovely people A recent Bone Marrow has shown what I believe to be early stage Myelofibrosis. Next appt in two weeks. Has anyone got any advice on any...

Hello lovely people A recent Bone Marrow has shown what I believe to be early s...

•10 days ago

PV - Critical Illness insurance claim?

I was diagnosed with PV last year. I am struggling with work and feeling very anxious and realise I have a life with critical illness policy with LV but am not...

I was diagnosed with PV last year. I am struggling with work and feeling very an...

•10 days ago

Query

Hi everyone,I've not posted on here for wee while but would like to ask question about meds I was prescribed few weeks ago. It's xromi oral hydroxycarbomide...

Hi everyone,I've not posted on here for wee while but would like to ask question...

•11 days ago

How much aspirin do you guys take?

My platelets are around 1100, minor symptoms ie the odd tingling in feet. I have been prescribed 100mg per day. Just wondering what everyone else is taking as...

My platelets are around 1100, minor symptoms ie the odd tingling in feet. I have...

•11 days ago

switch from peg interferon to Jakavi due to shortage, anyone doing the same?

Hello friends, I’ve PV jak 2 for 4 years now. Been on peg interferon 45mg weekly for the last year. My bloods have been good(platelets down to 350 from 1100)...

Hello friends, I’ve PV jak 2 for 4 years now. Been on peg interferon 45mg weekl...

•11 days ago

SCT Journey update No.8

Well here I am 21days post transplant and I’m HOME! It’s only 3 days but it’s so good to be back in normal surroundings. Already been back to Addenbrookes for...

Well here I am 21days post transplant and I’m HOME! It’s only 3 days but it’s so...

•12 days ago

Kidney Cysts?

I’m so pleased I went to Guys for referral. Not only did they spot low iron, which despite having three monthly bloods my local Haematology dept failed to...

I’m so pleased I went to Guys for referral. Not only did they spot low iron, whi...

•12 days ago

Hello again everybody! I have finally received a diagnosis based on BMB. Triple negative ET

I m a bit underwhelmed with my specialist as he is very vague about everything. Gave me a script for aspirin 100mg once a day. Suggested I do a blood test...

I m a bit underwhelmed with my specialist as he is very vague about everything. ...

•13 days ago

Sore feet and stiffness

Does anyone suffer from stiffness and restless legs at nite time when I get up in the morning I do feel really stiff is this dwn to having CalR mutation as I...

Does anyone suffer from stiffness and restless legs at nite time when I get up i...

•13 days ago

Lgm levels

I have ET and bren on hydroxycarbamide for 6 years and just been told my lgM level has increased to 2.2 any ideas about this. Info was in a letter so no...

I have ET and bren on hydroxycarbamide for 6 years and just been told my lgM le...

•13 days ago

Thank you

Thank you everyone for your replies This has really helped my decision

Thank you everyone for your replies This has really helped my decision

•14 days ago

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Turmeric

Hi, I have mf and take pegysys and low dose asprin. I have been suffering with lower right back pain, have seen a physio who said is is sacroiliac joint pain...

Hi, I have mf and take pegysys and low dose asprin. I have been suffering with l...

•14 days ago

Myelofibrosis and electrical stimulation

I have post pv Myelofibrosis. I had a lacuna stroke 2.5 years ago before pv was discovered. My hand is constricting more and I am thinking of having some...

I have post pv Myelofibrosis. I had a lacuna stroke 2.5 years ago before pv was...

•14 days ago

Pruritis

I posted some weeks ago asking for suggestions about increased itching,and you were all so helpful,and I have tried a lot of your ideas, but having just had...

I posted some weeks ago asking for suggestions about increased itching,and you w...

•14 days ago

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