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MPN Voice

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Headaches + fatigue

I too get headaches over my right eye. I have been taking hydroxycarbamide + aspirin for the last 6 weeks and they have reduced these bouts, but not totally....

I too get headaches over my right eye. I have been taking hydroxycarbamide + as...

Micky1956

•5 hours ago

1 Reply

clopidogrel

hello, I’m on clopidogrel and aspirin third week post my op (I have aneurysm secured by stent)and as I was warned I’m bruising a lot but also have severe pain...

hello, I’m on clopidogrel and aspirin third week post my op (I have aneurysm se...

Jaggy123

•7 hours ago

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Platlets

Hiya just recovering from gall bladder infection which was quite severe been on two lots of antibiotics still got a couple of days left my platlets are...

Hiya just recovering from gall bladder infection which was quite severe been on...

Annma

•13 hours ago

3 Replies

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Full blood counts

Does anyone use a blood count machine that uses just a pinprick drop of blood? The hospital my wife is under seems to use an inordinate amount of blood to test...

Does anyone use a blood count machine that uses just a pinprick drop of blood? T...

jointpain

•1 day ago

3 Replies

Besremi - After Two Years

Hi, all. I've been on Besremi for two years now and wanted to share an update and my experience. It's been a very good experience, so far; and I'm optimistic...

Hi, all. I've been on Besremi for two years now and wanted to share an update an...

GardNerd

•1 day ago

19 Replies

Interferon

Hi everyone im on 90mg interferon every second week since Feb this year platelets were 1110 came dwn to 916 quick enough but haven't really moved dwn much...

Hi everyone im on 90mg interferon every second week since Feb this year platel...

VTAR24

•1 day ago

5 Replies

Headaches

I am 48 years old and was diagnosed with ET a year ago cal r mutation I'm doing ok good and bad days I'm on aisprin and interferon 90 mg every second week...

I am 48 years old and was diagnosed with ET a year ago cal r mutation I'm doing...

VTAR24

•2 days ago

16 Replies

bruises

I have ET and am on Hu and aspirin. Hu 4 days x 1000 and 3 x 500. I’ve noticed what seems to be unexplained bruises appearing. Is this a common side......

I have ET and am on Hu and aspirin. Hu 4 days x 1000 and 3 x 500. I’ve noticed...

waterloveryippee

•2 days ago

5 Replies

Preparation for long flights?

Hello. Those of you who have lived with PV, particularly with raised thrombotic risk, for several years please may I ask whether your MPN specialists adjust...

Hello. Those of you who have lived with PV, particularly with raised thromboti...

RoundTheWorld

•2 days ago

8 Replies

MPN Specialist in Chicago?

Greetings, all. Can anyone please recommend an MPN specialist in Chicago? I’d appreciate any recommendations of a capable specialist in the city. Thanks so...

Greetings, all. Can anyone please recommend an MPN specialist in Chicago? I’d ap...

SouthSideA

•2 days ago

7 Replies

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

•2 days ago

8 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•2 days 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

•3 days ago

5 Replies

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

•3 days 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

•3 days 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

•4 days 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

•4 days 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

•5 days ago

31 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

•5 days 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 days 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

•7 days 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

•8 days 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

•8 days ago

28 Replies

Iron Deficiency Diagnosis table

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

william-Indo

•9 days ago

Be the first to reply

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

•9 days 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

•9 days 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

•9 days 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

•10 days 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

•10 days ago

2 Replies

Write a post or ask a question

Posts - MPN Voice | HealthUnlocked

MPN Voice

Headaches + fatigue

clopidogrel

Platlets

Full blood counts

Besremi - After Two Years

Interferon

Headaches

bruises

Preparation for long flights?

MPN Specialist in Chicago?

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

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