Posts - MPN Voice | HealthUnlocked

MPN Voice

10,555 members • 14,578 posts

All posts for May 2024

Running with PV?

Hello. Have any of you with PV had medical advice re. which types of cardio exercise are good or to avoid? I wondered if modest levels of running have any...

Hello. Have any of you with PV had medical advice re. which types of cardio exer...

RoundTheWorld

•20 days ago

19 Replies

Jak2 question and PV question (have medical anxiety so nervous)

Hey everyone sorry for such a long message. I'm a 28M and have had consistent high RBC, HGB, HCT counts for about 8 years now. The numbers though are ever so...

Hey everyone sorry for such a long message. I'm a 28M and have had consistent hi...

HockeyFan47

•21 days ago

22 Replies

How the Hydroxy treatment goes in time?

I am 65 female with JAK2 and ET diagnosis from Feb 2024In the past four months my platelets were in 800 to 900 range, and besides my age I have no other...

I am 65 female with JAK2 and ET diagnosis from Feb 2024In the past four months m...

BrightNorka

•21 days ago

14 Replies

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Rheumatoid arthritis

I have swellings in fingers and toes and told it was arthritis. I'm now taking hydroxy carbamide and have swellings on my knees and inside of my elbows. Also...

I have swellings in fingers and toes and told it was arthritis. I'm now taking h...

mag123ben

•21 days ago

5 Replies

What to expect at start of Pegasys?

Hello. A question for those of you with PV on Pegasys Interferon please:- If you had side-effects were they from the first injection or did they emerge later?...

Hello. A question for those of you with PV on Pegasys Interferon please:- If yo...

RoundTheWorld

•21 days ago

14 Replies

Pegasys nhs

Has anyone had a problem getting prescribed Pegasys on nhs as a first line treatment at 45? Really keen on this as a starting treatment due to age.

Has anyone had a problem getting prescribed Pegasys on nhs as a first line treat...

Scaredalone

•21 days ago

15 Replies

issues with Peg

Hi all I’ve had a few issues with Peg. Breathing changes & now sore throat which feels like a lump & uncomfortable ( hard to explain) Anyone experienced...

Hi all I’ve had a few issues with Peg. Breathing changes & now sore throat whic...

Mich10

•21 days ago

16 Replies

Anyone else with Jak2 PV have difficulty walking and leg pain?

I'm new here and really happy I found this forum. I've been diagonsed with Jak2 positive PV a year ago, after feeling unwell for a couple of years, and after...

I'm new here and really happy I found this forum. I've been diagonsed with Jak2 ...

Panda2014

•22 days ago

25 Replies

Strokes, ET, treatment options

Dear All, I’m a 37-year-old male. Two and a half years ago, I suffered a stroke. At that time, in the emergency room, my platelet counts were 844, 698, and...

Dear All, I’m a 37-year-old male. Two and a half years ago, I suffered a stroke...

sandor13

•22 days ago

18 Replies

Covid spring booster

Wanted to thank all of you who replied to my earlier post about the covid spring booster,much appreciated and after a lot of thought about pros and cons , I...

Wanted to thank all of you who replied to my earlier post about the covid spring...

caroline_284

•22 days ago

4 Replies

ET JAK2+ - Could this be progressing and how do I obtain more information/support?

I've have had several consultants (it seems that heamatology has been a revolving door one in one out for years at my hospital) since my diagnosis and I feel...

I've have had several consultants (it seems that heamatology has been a revolvin...

Semhuk

•23 days ago

13 Replies

ET & Canine kennel cough

I have been diagnosed with ET on Feb 24 and currently on I Peg 45mcg. Our dog who was due his kennel cough (infectious tracheobronchitis) inoculation today...

I have been diagnosed with ET on Feb 24 and currently on I Peg 45mcg. Our dog w...

RedCardRob

•23 days ago

12 Replies

Hydroxyurea and Low White Blood Cell Count

I am taking 1,000 mg of Hydroxyurea daily for Polycythemia Vera. It has been keeping my blood counts stable for a while. Since December 2023, my white blood...

I am taking 1,000 mg of Hydroxyurea daily for Polycythemia Vera. It has been kee...

Sheena2020

•23 days ago

5 Replies

Hip pain Bone Bx on 3/25/24

Good morning! I feel as though I'm falling apart and I'm almost 56. I'm having severe Left hip pain that started last night (out of the blue). Kept me up a...

Good morning! I feel as though I'm falling apart and I'm almost 56. I'm having...

MPNJunebug

•23 days ago

2 Replies

Test results..

My mum had her blood tests and for the first time since she was diagnosed with ET her platelets are within normal range. She is taking Hydroxyurea.. The only...

My mum had her blood tests and for the first time since she was diagnosed with ...

PH256

•23 days ago

3 Replies

Diet Advice for ET please

I was diagnosed three years ago with ET and started on hydroxycarbamide. The doctor told me very abruptly that I had a blood cancer and would have to take...

I was diagnosed three years ago with ET and started on hydroxycarbamide. The do...

Jelbea

•23 days ago

49 Replies

Time of taking Hydroxyurea

Hi Can you please tell me what time do you take Hydroxyurea? One haematologist yesterday told me I should take it in the morning empty stomach for it to work...

Hi Can you please tell me what time do you take Hydroxyurea? One haematologist y...

Kelly2

•23 days ago

18 Replies

Rux Questions

Hi, just looking for some advice and thoughts from those of you with knowledge or experience with Rux for PV. I have been on it now for approx 8 weeks. It...

Hi, just looking for some advice and thoughts from those of you with knowledge o...

MWxxxx

•23 days ago

41 Replies

Pegasys Side Effects

Hello All - Two months ago I started injecting 45mcg of Pegasys weekly. During this time I have developed dry mouth which is most pronounced in the morning....

Hello All - Two months ago I started injecting 45mcg of Pegasys weekly. Durin...

Proton_1

•24 days ago

47 Replies

Besemi Dosage?

My doctor has agreed to prescribe Besemri for me. I am currently on 500 mg of hydroxyurea three times a week. The initial dosage of Besemri is 500 mg/ml every...

My doctor has agreed to prescribe Besemri for me. I am currently on 500 mg of h...

FlannelPJs

•24 days ago

10 Replies

Should I change my medication

I have been on hydroxycarbamide now for around 8 months having ET Jak 2. As posted earlier I have had really painful mouth ulcers. These are still persistent...

I have been on hydroxycarbamide now for around 8 months having ET Jak 2. As pos...

Lilbert

•24 days ago

22 Replies

kidney problems

hello Using h.u &peg for p.v Does any one has a kidney problems?

eladhil

•24 days ago

1 Reply

Myelofibrosis - pain in quad muscles

Hi All, I have previously posted the group about this (and drew a negative response), but am interested to ascertain whether any newcomers with Jak 2...

Hi All, I have previously posted the group about this (and drew a negative resp...

TimGS

•24 days ago

25 Replies

jak2 Exon 12 and besremi?

Anyone have data or first hand exp with this mutation and besremi?

gdpone

•25 days ago

28 Replies

Keeping Pegasys injections cool and monitoring temp

Hi, I have recently been diagnosed with Erdheim-Chester Disease after being treated for many years for an MPN, (ET) I have started on Pegasys Interferon and...

Hi, I have recently been diagnosed with Erdheim-Chester Disease after being tre...

LeoTravels

•25 days ago

8 Replies

allele burden VAF rising

just got my annual review results back MPL Et here. Pre Pegysus it was 28 % 2 years ago. Last year 30% this year 32%. Last year haematologist wasn’t...

just got my annual review results back MPL Et here. Pre Pegysus it was 28 % 2 ...

Sprat19

•26 days ago

2 Replies

Covid vaccine reaction - further post

I want to thank all of you who answered my post. I really appreciate you reaching out to me. That is what makes this site invaluable - one is always...

I want to thank all of you who answered my post. I really appreciate you reachi...

Jelbea

•26 days ago

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Choosing medication for PV/early MF

Hi Guys, I was diagnosed with PV in January and a BMB showed I have stage 1 Fibrosis on the bone marrow so I have been diagnosed with PV/early MF. My...

Hi Guys, I was diagnosed with PV in January and a BMB showed I have stage 1 Fi...

DarcyShepp

•26 days ago

27 Replies

Reclast

Has anyone with ET received a Reclast infusion for osteoporosis? My endocrinologist recommended it as my lifestyle is good but my T scores continue to get...

Has anyone with ET received a Reclast infusion for osteoporosis? My endocrinolog...

Whitehair51

•27 days ago

3 Replies

Hip Replacement Update

Hip Replacement Update Good morning friends, just an update my surgery is scheduled for early June. I will be having it in the hospital where I receive...

Hip Replacement Update Good morning friends, just an update my surgery is sched...

Indigo42916

•27 days ago

11 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2024

Running with PV?

Jak2 question and PV question (have medical anxiety so nervous)

How the Hydroxy treatment goes in time?

Rheumatoid arthritis

What to expect at start of Pegasys?

Pegasys nhs

issues with Peg

Anyone else with Jak2 PV have difficulty walking and leg pain?

Strokes, ET, treatment options

Covid spring booster

ET JAK2+ - Could this be progressing and how do I obtain more information/support?

ET & Canine kennel cough

Hydroxyurea and Low White Blood Cell Count

Hip pain Bone Bx on 3/25/24

Test results..

Diet Advice for ET please

Time of taking Hydroxyurea

Rux Questions

Pegasys Side Effects

Besemi Dosage?

Should I change my medication

kidney problems

Myelofibrosis - pain in quad muscles

jak2 Exon 12 and besremi?

Keeping Pegasys injections cool and monitoring temp

allele burden VAF rising

Covid vaccine reaction - further post

Choosing medication for PV/early MF

Reclast

Hip Replacement Update

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