Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,730 posts

All posts for May 2024

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...

•3 months ago

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...

•3 months ago

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...

•3 months ago

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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...

•3 months ago

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...

•3 months ago

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...

•3 months ago

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 ...

•3 months ago

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,...

•3 months ago

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...

•3 months ago

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...

•3 months ago

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 ...

•3 months ago

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 ...

•3 months ago

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...

•3 months ago

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...

•3 months ago

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...

•3 months ago

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...

•3 months ago

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....

•3 months ago

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