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MPN Voice

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Anybody who stopped pegasys/besremi based on low allele burden

I was diagnosed at the end of 2020 with p-vera with the less common JAK 2 exon 12 mutation. I have been on pegasys for almost 4 years - now on maintenance...

I was diagnosed at the end of 2020 with p-vera with the less common JAK 2 exon 1...

gvibes

•16 hours ago

2 Replies

anyone had a hip replacyment with one kidney and polycythanemia

anyone had a op replacyment with one kidney and polycythanemia

Sickey

•17 hours ago

2 Replies

ASH 2024 Highlights Podcast with Dr. Claire Harrison- HealthTree Foundation

I wanted to share a podcast episode that Dr. Claire Harrison recorded with the HealthTree Foundation. This episode covered highlights from the American Society...

I wanted to share a podcast episode that Dr. Claire Harrison recorded with the H...

HungryB

•2 days ago

3 Replies

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Muscle weakness with Anagrelide?

Since early December, I have been experiencing increased fatigue, shortness of breath and painful muscle weakness in my thighs. I exercise daily but have...

Since early December, I have been experiencing increased fatigue, shortness of b...

Ritazz

•2 days ago

4 Replies

Yellow toe nails

Hi Have been on Hydroxy for 5 years 500mg daily and all of my toe nails are now yellow. It’s not fungal nail , is this usual? Am only too pleased that it’s...

Hi Have been on Hydroxy for 5 years 500mg daily and all of my toe nails are now...

jodary

•2 days ago

27 Replies

Aspirin

If platelets go up over a certain limit, is it advisable to stop taking aspirin? If so, what is that limit? Mine have gone up to 1200 and I’ve been told to...

If platelets go up over a certain limit, is it advisable to stop taking aspirin?...

Contrarymary3

•3 days ago

15 Replies

First Besremi Results

Switched from Peg to Bes 3 weeks ago and had my first panels taken last week (although I am on quarterly reads at the moment, MPN doc wants to have reads after...

Switched from Peg to Bes 3 weeks ago and had my first panels taken last week (al...

Solyesh

•3 days ago

6 Replies

Besremi, GI issues

Hello all, New on Besremi, no other meds prior, just infrequent phlebotomies. Doses were 100-50-50... not really high. After first dose high blood pressure...

Hello all, New on Besremi, no other meds prior, just infrequent phlebotomies. D...

Nat2025

•3 days ago

12 Replies

Starting Hydroxy.

hello, I’m a 50 year old female with ET diagnosed in 2021. Platelets were high at 1500 so was prescribed interferon 135mg. I could only tolerate 9 months after...

hello, I’m a 50 year old female with ET diagnosed in 2021. Platelets were high a...

Baimead

•4 days ago

42 Replies

Raynaud's: PV & Hydrea

I want to share my recent experience in case it's helpful to others. I've had Raynaud's since I was in my late teens, 60 years ago. I was diagnosed with PV...

I want to share my recent experience in case it's helpful to others. I've had R...

souplover

•5 days ago

7 Replies

EARLY DETECTION OF JAK2 GENE COULD AVERT MPN DX

Hey guys... :-) Thought some of you might find the following copy of a POST I've just placed on MATES in Oz an interesting read... Best wishes Steve...

Hey guys... :-) Thought some of you might find the following copy of a POST I'...

socrates_8

•5 days ago

25 Replies

Blood Smear tests

I've seen a few posts re blood smear tests but haven't seen replies so was wondering - do you folks get blood smear or blood morphology tests done? For the...

I've seen a few posts re blood smear tests but haven't seen replies so was wonde...

yibberat

•6 days ago

2 Replies

Besremi update❤️

I have been on Besremi for 2 years now. May will be 2 years from my last phlebotomy. Labs this week were solid and stable. WBCs 2.5, hct 41, PLT 122,...

I have been on Besremi for 2 years now. May will be 2 years from my last phlebo...

KLCTJC

•6 days ago

12 Replies

Blepharoplasty – Upper eyelid surgery and PV

Hi :) Has anyone done this? I was told my by hemo that its ok and that I can take a break from aspirin for 5 days before surgery...but im still worried about...

Hi :) Has anyone done this? I was told my by hemo that its ok and that I can ta...

bloodyblood

•7 days ago

9 Replies

Thank you

A big thank to you all for your replies Hunter I will follow up your suggestions. Best wishes Modbury123

A big thank to you all for your replies Hunter I will follow up your suggestion...

Modbury123

•7 days ago

1 Reply

Elevation with PV?

Has anybody heard comments on the impact of elevation with those with a PV? For example, is it safe to live at altitude (7,000 feet) or does that increase risk...

Has anybody heard comments on the impact of elevation with those with a PV? For ...

Luthorville

•7 days ago

21 Replies

Skiing with PV

I know many readers with PV will wonder if they should not try some activities because of the fear that they will not be able to cope. I just wanted to write a...

I know many readers with PV will wonder if they should not try some activities b...

Fieldsy57

•7 days ago

14 Replies

foot drop syndrome

I take ampyra to help me pick up my legs however I sometimes can’t wait to get to a shopping cart at the store. It makes me feel like I’m walking more normal

I take ampyra to help me pick up my legs however I sometimes can’t wait to get t...

Codybear1499

•7 days ago

1 Reply

Teeth whitening

Hi everyoneI had a question from a buddy She is female, has PV, aged 68. Feels well On hydroxicarbamide. Would like to have her teeth whitened but wonders if...

Hi everyoneI had a question from a buddy She is female, has PV, aged 68. Feels ...

Loubprv

Volunteer•8 days ago

8 Replies

Cramp

What do you use when you get cramp. Need help. !. My feet turned inwards, my legs swelled the back of my knees and thighs then went into cramp. The pain took...

What do you use when you get cramp. Need help. !. My feet turned inwards, my leg...

mag123ben

•8 days ago

4 Replies

Is My ET Progressing?

Hi everyone. This is the first time I post here but your chats have been so helpful for me over the past few months. I’m 44 years old and got diagnosed with...

Hi everyone. This is the first time I post here but your chats have been so help...

Blackdahlias

•8 days ago

11 Replies

Treatment dilemmas

Hello I have ET ( Jak2) diagnosed in Feb 24-I commenced HU 500 mg 5 days per week increased to 6 days platelets about 450 my Liver function tests (LFTs)...

Hello I have ET ( Jak2) diagnosed in Feb 24-I commenced HU 500 mg 5 days per we...

SpendyWendy

•8 days ago

8 Replies

Scratching the itch - update

First - THANK YOU all for your input on this Fortunately my itching is not as bad as some of you reported. - PHEW! but nonetheless very aggravating..... I...

First - THANK YOU all for your input on this Fortunately my itching is not as b...

quanglewangle

•8 days ago

13 Replies

Allele Burden and MPNs Explained by Prof. Lucia Masarova

At the 4th MPN Spring Symposium in Barcelona, Prof. Lucia Masarova, Assistant Professor at The University of Texas MD Anderson Cancer Center, discussed the...

At the 4th MPN Spring Symposium in Barcelona, Prof. Lucia Masarova, Assistant Pr...

Manouche

•8 days ago

10 Replies

Modbury 123

hello I am hoping someone can resolve something for me .I was diagnosed with ET plus Jak2 in 2022 treatment since then I have been on Hydroxycarbamide plus...

hello I am hoping someone can resolve something for me .I was diagnosed with ET ...

Modbury123

•9 days ago

4 Replies

JAK2 improvement

HiSome good news to share when I was diagnosed with PV in May 22 my jak2 result was 44.65 I was just having venesections and had 16 from diagnosis till Aug......

HiSome good news to share when I was diagnosed with PV in May 22 my jak2 result...

Cityreach

•9 days ago

34 Replies

Bone pain

Hi everyone Would appreciate a little advice. I was diagnosed with ET (JAK2 +) in 2001 and have lived with it since then. I am only taking baby aspirin and...

Hi everyone Would appreciate a little advice. I was diagnosed with ET (JAK2 +) ...

Karol_Rua

•9 days ago

5 Replies

Interferon

Hi does anyone know if interferon is still as hard to source as it was as my pharmacy is finding hard to get it in again 🤔Tks to all in advance .

Hi does anyone know if interferon is still as hard to source as it was as my ph...

VTAR24

•9 days ago

7 Replies

migraine

My husband is diagnosed with ET and PV back in 2018, he is 42y. His migraine is getting worse over the years, at this point he can't work because the pain and...

My husband is diagnosed with ET and PV back in 2018, he is 42y. His migraine is ...

julieke81

•9 days ago

10 Replies

ET to myelofibrosis

Hello everyone, it's been a while since I last posted, today I received the saddest news ever, my hematologist told me probably progression to myelofibrosis,...

Hello everyone, it's been a while since I last posted, today I received the sadd...

annlauriz

•9 days ago

91 Replies

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Posts - MPN Voice | HealthUnlocked

MPN Voice

Anybody who stopped pegasys/besremi based on low allele burden

anyone had a hip replacyment with one kidney and polycythanemia

ASH 2024 Highlights Podcast with Dr. Claire Harrison- HealthTree Foundation

Muscle weakness with Anagrelide?

Yellow toe nails

Aspirin

First Besremi Results

Besremi, GI issues

Starting Hydroxy.

Raynaud's: PV & Hydrea

EARLY DETECTION OF JAK2 GENE COULD AVERT MPN DX

Blood Smear tests

Besremi update❤️

Blepharoplasty – Upper eyelid surgery and PV

Thank you

Elevation with PV?

Skiing with PV

foot drop syndrome

Teeth whitening

Cramp

Is My ET Progressing?

Treatment dilemmas

Scratching the itch - update

Allele Burden and MPNs Explained by Prof. Lucia Masarova

Modbury 123

JAK2 improvement

Bone pain

Interferon

migraine

ET to myelofibrosis

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