Posts - MPN Voice | HealthUnlocked

MPN Voice

10,519 members • 14,521 posts

All posts for July 2023

Hydroxycarbamide and difficulty swallowing

Hi to all of you with experience of taking hydroxycarbamide. I have been taking 500 mg daily for over two years and in the last year I have been having...

Hi to all of you with experience of taking hydroxycarbamide. I have been taking...

Jelbea

•11 months ago

34 Replies

good news for once

in may they increased my hydroxy to 10 per week as my counts were raised on weds my results were normal wbc and 414 platelets really please have to stay on 10...

in may they increased my hydroxy to 10 per week as my counts were raised on weds...

Cat1001954

•11 months ago

15 Replies

Ruxalitinib and Peg interferon

AS previously mentioned my husband {He has PV and MPN} has for the past 6 years been on Ruxolitinib . He has now been advised that owing to quite a few skin...

AS previously mentioned my husband {He has PV and MPN} has for the past 6 years ...

waddles22

•11 months ago

24 Replies

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saline with venesection

hi Just wondering if anyone else has had experiences of having saline drip when they have their venesections. My haematologist has suggested it as she wants...

hi Just wondering if anyone else has had experiences of having saline drip whe...

Sanga

•11 months ago

17 Replies

platelets still dropping

still in normal range now at 340 but everything else decreased also maybe to fast dose this happen for everyone

still in normal range now at 340 but everything else decreased also maybe to fas...

Nc3500

•11 months ago

1 Reply

INCA033989 phase 1 clinical trial is recruiting patients

Source: https://www.rarediseaseadvisor.com/news/mf-news-briefs/phase-1-trial-testing-potential-mf-therapy-recruiting/ A new phase 1 clinical trial...

Source: https://www.rarediseaseadvisor.com/news/mf-news-briefs/phase-1-trial-tes...

flamboyant_hawking

•11 months ago

8 Replies

Besremi after a year

This past week, I received the results of a bone marrow biopsy after being on Besremi for 12 months to treat PV (diagnosed 16 years prior to interferon...

This past week, I received the results of a bone marrow biopsy after being on Be...

GardNerd

•11 months ago

19 Replies

Clot question

I'm curious if you could share with me whether you've had any blood clots since your MPN diagnosis, and when you were diagnosed with your MPN. It's one of my...

I'm curious if you could share with me whether you've had any blood clots since ...

ETinNYC

•11 months ago

55 Replies

what to think?

I posted recently that I’m 51 and platelets have consistently been slightly elevated for 5 years. They were consistently 400-450 until last month they were 500...

I posted recently that I’m 51 and platelets have consistently been slightly elev...

Labbymom

•11 months ago

10 Replies

Calr mutation ET

Does anyone know what 13.7% Calr means? Thanks

hall2

•11 months ago

4 Replies

Am I being negative or realistic?

I have been dx with ET. Took Hu for 8 days. Felt horrible , called specialist and came off HU. I am well over 65 and platelet count never over mid 500s and...

I have been dx with ET. Took Hu for 8 days. Felt horrible , called specialist an...

JAB6

•11 months ago

44 Replies

SCT Update Again

I thought I would just check in and update my SCT journey. I am over 300 days post transplant now and feeling pretty well generally. Today I had a donor...

I thought I would just check in and update my SCT journey. I am over 300 days po...

Otterfield

•11 months ago

43 Replies

Side effects of baby aspirin

I want to talk about the side effects of taking baby aspirin. I had been taking aspirin daily for more than a year on doctor's orders, and at the end of...

I want to talk about the side effects of taking baby aspirin. I had been taki...

Softy125

•11 months ago

10 Replies

ET/Hydroxycarbamide/ Low JAK2 levels - An update

So here is an update following last week's consultant visit. First though thank you more than I can say to everyone who replied to me with information and such...

So here is an update following last week's consultant visit. First though thank ...

Cassandra61

•11 months ago

5 Replies

left hand and arm, cold and painful

good afternoon everyone was wondering if anyone else experienced this my left hand and arm were ice cold even under a sweater and very painful and fingers and...

good afternoon everyone was wondering if anyone else experienced this my left h...

Nc3500

•11 months ago

6 Replies

Migraine Headaches with disturbance of speech

I have ET treated with 500 mg hydroxycarbamide daily. I am also taking the blood thinner - rivaroxaban - as I have had previous clots - and buprenorphine...

I have ET treated with 500 mg hydroxycarbamide daily. I am also taking the bloo...

Jelbea

•11 months ago

17 Replies

Pegasys not working

Four months in, and Pegasys is not working. I started low and slow 4 months ago and worked up to my current 90 mcg/week without any side effects. My platelet...

Four months in, and Pegasys is not working. I started low and slow 4 months ago ...

Minify

•11 months ago

36 Replies

London Marathon

Hi, Can anybody advise me how one applies to represent MPN Voice in The London Marathon? I should add it will be my daughter running, not me. Thank You

Hi, Can anybody advise me how one applies to represent MPN Voice in The London ...

JP1952

•11 months ago

3 Replies

fatigue

Hello I’m ET jak2 positive and suffer from extreme fatigue. I am currently off work and eager to return, I have been reading an article about MPN and the use...

Hello I’m ET jak2 positive and suffer from extreme fatigue. I am currently off ...

YBSx

•11 months ago

13 Replies

Treatment-free remission as a new goal for patients with PV

« Treatment-free remission Patients are considered to be in treatment-free remission when therapy is discontinued and the following occur: Complete...

« Treatment-free remission Patients are considered to be in treatment-free re...

Manouche

•11 months ago

3 Replies

Thanks

Thanks to all of you who have sent such lovely & supporting replies. It is a really good forum to belong to. Sending best wishes, Shirley

Thanks to all of you who have sent such lovely & supporting replies. It is a rea...

SRH55

•11 months ago

7 Replies

Aspirin Warning: Anemia May Increase With Use

»Older people who take daily low-dose aspirin have at 20% higher risk of developing anemia even without having already had a major bleeding event, according...

»Older people who take daily low-dose aspirin have at 20% higher risk of develo...

Manouche

•11 months ago

11 Replies

Cortisone Injections

Hi all, I'm looking for some advice. I have bursitis in my hip, and my GP has recommended a corrisone injection as part of my treatment plan. He has advised...

Hi all, I'm looking for some advice. I have bursitis in my hip, and my GP has r...

Sagiegirl

•11 months ago

24 Replies

Besremi, Pegasys and Jakafi adverse event question?

As said before, my brother started Besremi recently. And since then I am doing some researches about the safety of drugs for PV and other MPN. To ease my...

As said before, my brother started Besremi recently. And since then I am doing s...

Joey1025

•11 months ago

22 Replies

SCT update

I went into hospital today to start my chemo, only to be told there is an issue with the donor! Obviously don’t know if there’s a family issue or they’ve...

I went into hospital today to start my chemo, only to be told there is an issue ...

SRH55

•11 months ago

45 Replies

gilded

Hello MPN Voice. Last week I contracted cellulitis (don’t know how) and, to cut a long story short, I was placed on an antibiotic (Flucloxacillan) drip. No...

Hello MPN Voice. Last week I contracted cellulitis (don’t know how) and, to cut...

gilded

•11 months ago

14 Replies

Is Dienogest safe for ET patients?

I am ET Jak2+ for 2 years now. I just consulted my OB-GYNE yesterday and was diagnosed with Endometriosis so she is prescribing me pills to stop my period....

I am ET Jak2+ for 2 years now. I just consulted my OB-GYNE yesterday and was d...

livelovelaugh1992

•11 months ago

1 Reply

Besremi Question

For all of you on Besremi how do you pay for it? Does your insurance pay for it ? Or Medicare? It’s such an expensive drug ? sorry if this is too personal...

For all of you on Besremi how do you pay for it? Does your insurance pay for i...

Ccsintx

•11 months ago

16 Replies

Pv and gout

Hi guys just wondering if anyone else has suffered from gout about 6 weeks ago had a really painful big toe joint this has been treated with various NSAID and...

Hi guys just wondering if anyone else has suffered from gout about 6 weeks ago h...

Jasbak22

•11 months ago

17 Replies

Results

Sorry all I just need to vent. Feeling frustrated. Also posted on uk facebook post- wondering if you have any thoughts! Still no further forward. Following...

Sorry all I just need to vent. Feeling frustrated. Also posted on uk facebook po...

kay79879

•11 months ago

6 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2023

Hydroxycarbamide and difficulty swallowing

good news for once

Ruxalitinib and Peg interferon

saline with venesection

platelets still dropping

INCA033989 phase 1 clinical trial is recruiting patients

Besremi after a year

Clot question

what to think?

Calr mutation ET

Am I being negative or realistic?

SCT Update Again

Side effects of baby aspirin

ET/Hydroxycarbamide/ Low JAK2 levels - An update

left hand and arm, cold and painful

Migraine Headaches with disturbance of speech

Pegasys not working

London Marathon

fatigue

Treatment-free remission as a new goal for patients with PV

Thanks

Aspirin Warning: Anemia May Increase With Use

Cortisone Injections

Besremi, Pegasys and Jakafi adverse event question?

SCT update

gilded

Is Dienogest safe for ET patients?

Besremi Question

Pv and gout

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