Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for June 2024

Experiences using the scanwatch please.

Months after applying I finally received a scanwatch. A previous email had said someone would call to assist with set up. So far I have not received any call...

Months after applying I finally received a scanwatch. A previous email had said ...

MCW22

•6 months ago

9 Replies

feel at my best when haematocrit is between 39 and 42

Hello all I feel at my best when my haematocrit is between 38/39 and 42. I have a bit of difficulty getting my haematologist to understand this - he says as...

Hello all I feel at my best when my haematocrit is between 38/39 and 42. I hav...

Loubprv

Volunteer•6 months ago

25 Replies

Confused

I had my bloods taken for MPN jak2 . I will speak to my consultant at the hospital by phone. I never remember what to ask about. I get told my platelets are up...

I had my bloods taken for MPN jak2 . I will speak to my consultant at the hospit...

mag123ben

•6 months ago

5 Replies

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Age-Based Risk

I could not agree more with focusing on arresting MPN disease progression than on solely treating symptomology/lab results. Some of it is lack of research $...

I could not agree more with focusing on arresting MPN disease progression than o...

rcan_sMF

•6 months ago

5 Replies

Change of Approach to Management of PV in UK

Saw the senior Haematologist in Bristol on Friday due to the junior doctors strike. She told me Prof Harrison had done a presentation that week in which she'd...

Saw the senior Haematologist in Bristol on Friday due to the junior doctors stri...

DougyW

•6 months ago

26 Replies

bleeding

Hi all I was taking clopidrell blood thinners from few years then I sadly kept heavy nose bleeds so I been taking 75 mg Asprin daily and I notice I have now...

Hi all I was taking clopidrell blood thinners from few years then I sadly kept h...

Birdlady2021

•6 months ago

7 Replies

low wbc

asking out of interest- my sons friend (18) is being investigated for low WBC - his dad died 7 yrs ago and had PV ( literally found this out today but knowing...

asking out of interest- my sons friend (18) is being investigated for low WBC - ...

Gordem100

•6 months ago

2 Replies

How long for Besremi to work?

I've recently started Besremi for treatment for PV. I will be transitioning from hydroxyurea, and wonder if others have experience with this. How long did it...

I've recently started Besremi for treatment for PV. I will be transitioning from...

SouthSideA

•6 months ago

33 Replies

Hypothyroidism and Hydroxycarbomide

Hi has anyone on here who suffers from hypothyroidism and takes thyroxine found that after an increase in Hydroxycarbomide they have needed an adjustment to...

Hi has anyone on here who suffers from hypothyroidism and takes thyroxine found...

jodary

•6 months ago

16 Replies

Scoliosis

Does anyone else have scoliosis and MPN jak2. I'm in so much shoulder pain and neck pain. Have tried a lot of pain killers, not very helpful. Wondered what...

Does anyone else have scoliosis and MPN jak2. I'm in so much shoulder pain and n...

mag123ben

•6 months ago

4 Replies

COVID and Besremi

Dear all,I have just got a COVID infection from a trip in US (symptoms showed last Friday). I started getting better (no more fever), so I hope that in few...

Dear all,I have just got a COVID infection from a trip in US (symptoms showed la...

Dane12

•6 months ago

10 Replies

Allele Burden

Greetings, At my recent MPN specialist appointment she gave me the results of an Allele burden sample I provided a year ago. She stated it was at 30%. This is...

Greetings, At my recent MPN specialist appointment she gave me the results of a...

mbr8076

•6 months ago

12 Replies

Started Interferon

About two weeks ago I put a post on here about my anxiety around changing my treatment plan from Hydroxy to Peg Interferon. I had been sent the vaccine but...

About two weeks ago I put a post on here about my anxiety around changing my tre...

Reggieroo

•6 months ago

28 Replies

Iron Deficiency Diagnosis table

Dear all, Hereby is the posting by Dr. Aaron Goodman. Hope it may useful...

william-Indo

•6 months ago

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Jakafi - Chronic Myelofibrosis

I’m 72 years old hispanic female & was diagnosed with Chronic Myeloproliferative Disorder - Primary Myelofibrosis on January 2024. I started with Jakafi 10 mg...

I’m 72 years old hispanic female & was diagnosed with Chronic Myeloproliferative...

Fresa7

•6 months ago

19 Replies

Open mouth sores on Besremi?

Hello community Besremi has been such a positive change for my husband who switch to it from Hydroxyurea due to side effects that were unbearable. He’s only...

Hello community Besremi has been such a positive change for my husband who swi...

Laluna5683

•6 months ago

2 Replies

Macrocytosis

I am 68 year old female with ET, JAK2V617F. Diagnosed in Dec. 2022 with blood only, no BMB. I take a baby aspirin and 500 mg hydroxyurea 5 days a week....

I am 68 year old female with ET, JAK2V617F. Diagnosed in Dec. 2022 with blood o...

johnnyjumpups

•6 months ago

8 Replies

Myelofibrosis- GVHD graft, versus, host, disease.

Hi, thanks for accepting me onto your site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began...

Hi, thanks for accepting me onto your site. My name is Gary, I am 64 years old a...

FreemanSaviors

•6 months ago

12 Replies

Myelofibrosis - GVHD - graft, versus, host, disease

Hi, thanks for accepting me onto the site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began...

Hi, thanks for accepting me onto the site. My name is Gary, I am 64 years old an...

FreemanSaviors

•6 months ago

2 Replies

bloods! low platelets, high haemoglobin???

As usual, I am not sure where to post this: Firstly I have antibet2glycoprotein 1 antibodies which thicken the blood. I should be taking a daily aspirin but...

As usual, I am not sure where to post this: Firstly I have antibet2glycoprotei...

Brychni

•6 months ago

3 Replies

+100 Days post transplant

Well I've made it to the first mile post, I can't believe it's 100 days since my SCT, I cannot thank my brother too much for being my donor. I still have low...

Well I've made it to the first mile post, I can't believe it's 100 days since my...

Flyingsteamer

•6 months ago

26 Replies

MRI scan results

I have had back issues for many years but in March this flare up seemed different. I finally went private for a consultation which quickly lead to an MRI scan...

I have had back issues for many years but in March this flare up seemed differen...

NickyRobinson

•6 months ago

7 Replies

weight loss seemed impossible while taking Hydrea ! The scale finally moved !

I have always been weight conscious, I am very active and a runner plus I weight train twice a week for the past 30 years! I was diagnosed 3 years ago with PV...

I have always been weight conscious, I am very active and a runner plus I weight...

Sunnylesser

•7 months ago

7 Replies

Reduced JAK2 allele burden

I see so many posts where people discuss reduction in JAK2 allele burden. In particular how certain medications are responsible for that reduction. I know...

I see so many posts where people discuss reduction in JAK2 allele burden. In pa...

LIGEBA

•7 months ago

32 Replies

RUX for PV?

I have been on run for a few months now. Blood tests are down, perfect right now. Still fatigued though. Ears ringing like crazy but thankful. Anyone else with...

I have been on run for a few months now. Blood tests are down, perfect right now...

Ginger1017

•7 months ago

7 Replies

Thank you!!!❤️

Labs were almost identical, hct 38, wbcs 2.5, plt 177, neut 1.6. Liver and kidneys were good! Going to just drop to 200mcg as hct has been going down for...

Labs were almost identical, hct 38, wbcs 2.5, plt 177, neut 1.6. Liver and kidn...

KLCTJC

•7 months ago

16 Replies

Microplastics Are Everywhere. Here’s How to Avoid Eating Them...

Microplastics Are Everywhere. Here’s How to Avoid Eating Them... Microplastics and nanoplastics are everywhere. The teeny tiny pieces of plastic have...

Microplastics Are Everywhere. Here’s How to Avoid Eating Them... Microplastics ...

PhysAssist

•7 months ago

8 Replies

A Bright Note & Travelling with Besremi

This is just a bit of a bright note. I just finished a bit of a holiday prior to a 5-day conference in Brussels, Belgium. I had to fly with the Besremi then...

This is just a bit of a bright note. I just finished a bit of a holiday prior t...

hunter5582

•7 months ago

35 Replies

rash on feet

anyone else have problems with itchy rash on feet whilst taking hydroxycarbamide ?

anyone else have problems with itchy rash on feet whilst taking hydroxycarbamide...

HazeBlue

•7 months ago

10 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2024

Experiences using the scanwatch please.

feel at my best when haematocrit is between 39 and 42

Confused

Age-Based Risk

Change of Approach to Management of PV in UK

bleeding

low wbc

How long for Besremi to work?

Hypothyroidism and Hydroxycarbomide

Scoliosis

COVID and Besremi

Allele Burden

Started Interferon

Iron Deficiency Diagnosis table

Jakafi - Chronic Myelofibrosis

Open mouth sores on Besremi?

Macrocytosis

More injection questions…

Myelofibrosis- GVHD graft, versus, host, disease.

Myelofibrosis - GVHD - graft, versus, host, disease

bloods! low platelets, high haemoglobin???

+100 Days post transplant

MRI scan results

weight loss seemed impossible while taking Hydrea ! The scale finally moved !

Reduced JAK2 allele burden

RUX for PV?

Thank you!!!❤️

Microplastics Are Everywhere. Here’s How to Avoid Eating Them...

A Bright Note & Travelling with Besremi

rash on feet

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