Posts - MPN Voice | HealthUnlocked

MPN Voice

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supplements with essential thrombocyethemia

Hi I am back in hydroxi after suspected added issues to thyroid being on pegulated interferon for a number of years. Just wondered what supplementation...

Hi I am back in hydroxi after suspected added issues to thyroid being on pegul...

BeckyDing

•1 hour ago

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Switch from Besremi to Jakafi

I am a PV patient 57 years old diagnosed at age 50 and considered low risk. First five years after diagnosis I was treated with monthly phlebotomy and baby...

I am a PV patient 57 years old diagnosed at age 50 and considered low risk. ...

mfh7

•3 hours ago

1 Reply

Dizzyness

Hi just wondered if anyone suffers when they have been busy or shopping come home sit down then stand up ,go very dizzy legs feel like jelly my ears block up...

Hi just wondered if anyone suffers when they have been busy or shopping come hom...

Lyla2018

•3 hours ago

1 Reply

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travel insurance

I am planning a four day holiday to Majorca from Scotland. I’ve been refused insurance because I’m on hydrocarbamide. Does anyone recommend Insurers who...

I am planning a four day holiday to Majorca from Scotland. I’ve been refused in...

Hannah2308

•7 hours ago

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Anyone turn down a stem cell transplant?

I have post ET MF. Currently I'm on Rux and getting monthly cycles of 5 aza. I don't need transfusions. Day to day I feel pretty good and can do most of what I...

I have post ET MF. Currently I'm on Rux and getting monthly cycles of 5 aza. I d...

LongETinUS

•18 hours ago

7 Replies

potassium

Hi everyone I don’t post often but always read posts would like to ask your advice over the last few months my potassium has been high and have had a ECG...

Hi everyone I don’t post often but always read posts would like to ask your adv...

Poppy6060

•21 hours ago

7 Replies

Headaches / update, also Spring Covid Vaccine update.

I was grateful for everyone’s’ replies to my recent post and I telephoned my Haematologist who advised a blood test and to see a doctor as soon as possible If...

I was grateful for everyone’s’ replies to my recent post and I telephoned my Hae...

azaelea

•1 day ago

4 Replies

SCT For MF Eligibility

I received an Email from Patient Power this morning with Jeanne Palmer of the Mayo in USA talking about Transplant Eligibility for Myelofibrosis. This would be...

I received an Email from Patient Power this morning with Jeanne Palmer of the Ma...

MFBMT2011

•1 day ago

1 Reply

Blood

Well after tests on low red cells turned out to be a polyp which was removed and a large tumour in the bowel which was positive I am 3 weeks into recovery...

Well after tests on low red cells turned out to be a polyp which was removed and...

ChillyAsh34

•1 day ago

11 Replies

Allele Burden JAK 2

My numbers have been low and getting lower I think that test last year was below 2%. This year they have done another test and the JAK2 mutation result has...

My numbers have been low and getting lower I think that test last year was below...

shiftzz

•1 day ago

18 Replies

My hospital appointment schedule has changed

Hi everyone, I haven't been on here for a while as some life events took over for the last couple of years. I am looking for some advice and feedback about my...

Hi everyone, I haven't been on here for a while as some life events took over fo...

EmeraldA

•1 day ago

18 Replies

Ruxolitinib - how has it impacted your INR if you are on warfarin

Hi I started Rux about 5 weeks ago. No side effects other than INR has been really strange. I’m on warfarin and increased dose by 1mg but still below target...

Hi I started Rux about 5 weeks ago. No side effects other than INR has been rea...

user2021a

•1 day ago

1 Reply

More medication????

Hi, I have Jac2 ET and Menieres Disease, take Hydroxy, Copydogrel, Lisinopril and Betahistine Dihydrochloride. Have been very stable with no side effects...

Hi, I have Jac2 ET and Menieres Disease, take Hydroxy, Copydogrel, Lisinopril ...

Jennytheb

•1 day ago

7 Replies

fatigue

was diagnosed with ET and Jak2 in October 2023. I have been on Hydroxycarbamide, 500 mg per day and 75 mg aspirin since then with platelets decreasing to 310...

was diagnosed with ET and Jak2 in October 2023. I have been on Hydroxycarbamide,...

Maxpenny

•1 day ago

13 Replies

Itchy feet and hands

I’m on hydroxyurea. I Don’t know if this has anything to do with it, but sometimes when I go to bed, the soles of my feet or the palms of my hands start...

I’m on hydroxyurea. I Don’t know if this has anything to do with it, but somet...

Winchie

•2 days ago

5 Replies

Peginterferon and platelets

I started taking peginterferon 45 mg in November 2023 with a platelet count of 860. Since then, my bloods have been checked monthly, and my dose gradually...

I started taking peginterferon 45 mg in November 2023 with a platelet count of 8...

Lyndjs

•2 days ago

12 Replies

anybody had these tests before?

Hi Everyone Long time, no post so I apologise. Since I last spoke to anyone I have been diagnosed with Osteoperosis, so fighting a number of demons. My...

Hi Everyone Long time, no post so I apologise. Since I last spoke to anyone I ...

jillydabrat

•2 days ago

3 Replies

Anxiety

My husband has PV Jak2, intolerant to Hydroxyuria, and is to start Jakafi 10mg twice daily. He has severe anxiety and is on SSRI (duloxetine) with recent...

My husband has PV Jak2, intolerant to Hydroxyuria, and is to start Jakafi 10mg ...

DaisyJayne1

•2 days ago

10 Replies

Tired

I have JAK2 and ET. I have been doing great since I am off of the HU and Anagralide. Only on Eliquis 2x's a day. Doing whatever I want to do. However,...

I have JAK2 and ET. I have been doing great since I am off of the HU and Anagra...

Preacherswife

•3 days ago

4 Replies

Taking Prolia with Rusolitinib (Jakafi)

I have been taking Jakafi (15 mg) twice a day for the last 3 years for my polycythemia vera. I also take blood thinners for my thrombocytosis since I have...

I have been taking Jakafi (15 mg) twice a day for the last 3 years for my polyc...

Buggerbear

•3 days ago

12 Replies

Walking

I have fibromyalgia as well as ET MPN. I'm 74 years old. Thanks for all your replies. I feel sometimes a good moan helps.

I have fibromyalgia as well as ET MPN. I'm 74 years old. Thanks for all your re...

mag123ben

•3 days ago

2 Replies

change of medication

hi lovely people I have been feeling somewhat a bit down the last couple of weeks, so the last time I went the hospital I told my doctor how I was feeling, I...

hi lovely people I have been feeling somewhat a bit down the last couple of week...

Staroftheday

•3 days ago

6 Replies

I hate walking.

I'm told to go for a walk every day. I take the dogs. Usually 1/2 HR to an hour. My head hurts , my neck hurts, my vision is crap anyway. And my left shoulder...

I'm told to go for a walk every day. I take the dogs. Usually 1/2 HR to an hour....

mag123ben

•3 days ago

12 Replies

On another subject …

Inspired bya post on another site I’d like to ask if anyone has high risk mutations and has NOT had a stem cell transplant and has NOT progressed to leukaemia?...

Inspired bya post on another site I’d like to ask if anyone has high risk mutati...

lizzziep

•4 days ago

5 Replies

Different mutation?

I was just checking via my NHS app what had been sent to my GP, when I noticed on a letter from Guys this - it listed my mutations - CGN - normal karotype,...

I was just checking via my NHS app what had been sent to my GP, when I noticed o...

lizzziep

•4 days ago

1 Reply

overwhelmed

My partner has had slowly rising haemoglobin for about 6 months but it stayed quite borderline. Since Christmas, the hct and rbc have also been elevated. The...

My partner has had slowly rising haemoglobin for about 6 months but it stayed qu...

Scaredalone

•4 days ago

17 Replies

Question about Hives-bad hives

I have had terrible hives and angioedema for the past two days. I look like I've had lip injections. And my hands are both incredibly swollen. I'm itchy to...

I have had terrible hives and angioedema for the past two days. I look like I'v...

Lena70

•5 days ago

25 Replies

Airport travel with Injections

Can some experienced travellers who use Pegasys give me some advice please. I am travelling this week from the UK to Mexico, and have bought a Disoncare...

Can some experienced travellers who use Pegasys give me some advice please. I am...

swimswam

•6 days ago

9 Replies

Hydroxycarbamide

Hello I’m taking Hydroxycarbamide 500mg daily for the last 3 years for ET jak2 positive. Yesterday 4 of my fingernails came away from the skin bed…… so sore...

Hello I’m taking Hydroxycarbamide 500mg daily for the last 3 years for ET jak2...

YBSx

•6 days ago

16 Replies

ET and psoriasis treatments

I’m triple negative ET, age 55, low dose aspirin, stable platelets 700-800, diagnosed 2018. I have had guttate psoriasis for 30 years which has developed into...

I’m triple negative ET, age 55, low dose aspirin, stable platelets 700-800, diag...

jenster68

•7 days ago

13 Replies

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Posts - MPN Voice | HealthUnlocked

MPN Voice

supplements with essential thrombocyethemia

Switch from Besremi to Jakafi

Dizzyness

travel insurance

Anyone turn down a stem cell transplant?

potassium

Headaches / update, also Spring Covid Vaccine update.

SCT For MF Eligibility

Blood

Allele Burden JAK 2

My hospital appointment schedule has changed

Ruxolitinib - how has it impacted your INR if you are on warfarin

More medication????

fatigue

Itchy feet and hands

Peginterferon and platelets

anybody had these tests before?

Anxiety

Tired

Taking Prolia with Rusolitinib (Jakafi)

Walking

change of medication

I hate walking.

On another subject …

Different mutation?

overwhelmed

Question about Hives-bad hives

Airport travel with Injections

Hydroxycarbamide

ET and psoriasis treatments

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