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MPN Voice

10,438 members • 14,388 posts

All posts for April 2023

Besremi Rash

This is the second time that this sort of rash has appeared as a side effect from Besremi. It started on April 24, primarily on the left arm. In a more minor...

This is the second time that this sort of rash has appeared as a side effect fro...

hunter5582

•1 year ago

33 Replies

Paraneoplastic Syndromes and MPNs

This is a very interesting article on a topic I have not seen before. It caught my attention as I recall some on the forum reporting Myasthenia Gravis along...

This is a very interesting article on a topic I have not seen before. It caught...

hunter5582

•1 year ago

5 Replies

I have Polycythemia with Jak 2 Mutations and /Thrombocytopenia

Hi I wonder if someone could please advise me x I’ve recently been started on I tablet 500mgs of Hydroxycarbamide a day x I’m in a new relationship and I...

Hi I wonder if someone could please advise me x I’ve recently been started on I ...

fairytabu

•1 year ago

10 Replies

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Jakavi

Hi Denise here again. Has experienced a weight gain while on Jakavi. I have been on and off it for past fifteen months due to side effects. I have put on over...

Hi Denise here again. Has experienced a weight gain while on Jakavi. I have been...

Mudmaker

•1 year ago

15 Replies

LDH Test with ET

Hello Family, I am on my 8th week of pegasys treatment which I seem to be tolerating well @ 45mcg. I am also in the process of seen an MPN Specialist in few...

Hello Family, I am on my 8th week of pegasys treatment which I seem to be toler...

Afya23

•1 year ago

21 Replies

A1C and PV

Does anyone know if PV affects A1C accuracy?

Barbiebreath

•1 year ago

7 Replies

Combining Hydroxycarbamide and Anagrelide

I was wondering how common it is to be on both of these at the same time, as I have since last summer. I am on quite high doses of both (plus aspirin) and my...

I was wondering how common it is to be on both of these at the same time, as I h...

ETket

•1 year ago

33 Replies

exciting research

https://www.mpnresearchfoundation.org/news/nanobody-based-targeted-therapy/?utm_source=facebook&utm_medium=social+media&utm_campaign=2023+news+post&fbclid=IwAR3

https://www.mpnresearchfoundation.org/news/nanobody-based-targeted-therapy/?utm_...

Nrl303

•1 year ago

5 Replies

ET + JAK2

Had appointment with hematologist today. My platelets have been hovering around 200 for quite some time so he’s lowering my HU dosage. Go back in 3 months for...

Had appointment with hematologist today. My platelets have been hovering around ...

Smoothie2020

•1 year ago

13 Replies

Progression

I am 23 years old & have had PV for 6 months & haven’t had any problems other than body aches maybe? I know this can progress into serious other cancers, but...

I am 23 years old & have had PV for 6 months & haven’t had any problems other th...

JAKboy

•1 year ago

15 Replies

Momelotinib Found Superior to Danazol for the Treatment of Myelofibrosis

Clinically significant improvements in myelofibrosis-associated symptoms, anemia, and spleen response were achieved with momelotinib, compared with danazol, in...

Clinically significant improvements in myelofibrosis-associated symptoms, anemia...

PhysAssist

•1 year ago

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PIM1 Mutation in addition to JAK2?

Any of you who have a JAK2 mutation, have you later been diagnosed with a PIM1 mutation as well? If so, can you share what you know about it? Thank you.

Any of you who have a JAK2 mutation, have you later been diagnosed with a PIM1 m...

LIGEBA

•1 year ago

4 Replies

Bladder damage from HU ?

Hi all, Haven’t caught up for some time so I do apologise to all 🥰 Have a question - has anyone experienced bladder damage from Hydroxyurea? I recently had...

Hi all, Haven’t caught up for some time so I do apologise to all 🥰 Have a que...

NedKel65

•1 year ago

6 Replies

Relapse, Coping with less Hope

I've had a uniquely good three weeks and was starting to get used to it. No fear of leaving home, maybe even do a social event. Prior to that I was dealing...

I've had a uniquely good three weeks and was starting to get used to it. No fear...

EPguy

•1 year ago

109 Replies

Interferon

Hi my name is Denise I have been asked by Haematology consultant to consider starting on Interferon but I am worried about side effects. Particularly hair...

Hi my name is Denise I have been asked by Haematology consultant to consider sta...

Mudmaker

•1 year ago

41 Replies

Encouraging news

Yesterday's review has lifted my hopes of changing drugs from hydroxy to ruxolinib. My bloods are all within range but my itch is still bothering me. So my...

Yesterday's review has lifted my hopes of changing drugs from hydroxy to ruxoli...

john0084

•1 year ago

3 Replies

sleepless nights

I’m so very tired all the time and yet I have problems sleeping. Is it due to hydroxycarbamide? Dosage of 6000 a week now. Not functioning well with sleepless...

I’m so very tired all the time and yet I have problems sleeping. Is it due to h...

Cokopops

•1 year ago

8 Replies

Pre MF?

Please can anyone define "pre MF"?

Jewels707

•1 year ago

6 Replies

Chorea and PV

Hi - I don't post very often but I thought that this might be worthy of sharing. It is second hand experience as it is my mother who suffers with Polycythaemia...

Hi - I don't post very often but I thought that this might be worthy of sharing....

PFR1937

•1 year ago

4 Replies

Little bit of hope

I am very young compared to most people diagnosed on here, but this site has been so great & has given me hope that I can deal with this. I’ve learned so...

I am very young compared to most people diagnosed on here, but this site has be...

Nrl303

•1 year ago

5 Replies

Coping with itchiness and side effects of peg-interferon

Hi everyone, I'm new to this forum and relatively new to pegylated interferon. I haven't really had the side effects I was expecting but after a month or so on...

Hi everyone, I'm new to this forum and relatively new to pegylated interferon. I...

emcee19

•1 year ago

27 Replies

Platelets and diet

Hi all, I have come back from the haemotologist today. After a few weeks of receiving weekly vene sections and a couple of months on hydrea, my polycythemia...

Hi all, I have come back from the haemotologist today. After a few weeks of rece...

Deya08

•1 year ago

37 Replies

PV and lung problems/findings

Hello dear group, once again I am turning to you, in the hope somebody might share if they had a similar experience. A week ago, I went to the doctors...

Hello dear group, once again I am turning to you, in the hope somebody might sh...

love0826

•1 year ago

8 Replies

MPN ET, Hydroxycarbamide & wrist pain

I'm not imagining this. My wrists hurt like hell. I can still do normal things okay, but I'm afraid of twisting motions. The discomfort disrupts sleep every...

I'm not imagining this. My wrists hurt like hell. I can still do normal things...

HoundSept2022

•1 year ago

10 Replies

ET related fatigue

Hi my husband is 50 and was diagnosed with ET in January 2023 due to high platelets (917). He is overweight a little but other than that he does not have any...

Hi my husband is 50 and was diagnosed with ET in January 2023 due to high platel...

Morris941

•1 year ago

17 Replies

Thank You For PegInterferon Rash Info

I have been on interferon for 2 months with no side effects until an odd, hard red spot appeared on my shin. Didn't hurt or bother me other than looking at...

I have been on interferon for 2 months with no side effects until an odd, hard r...

Mishie14

•1 year ago

3 Replies

Advice please

Well I put a message on here asking for advice, only to have my post hijacked with something totally unrelated! I thought I had 6 responses but not at all....

Well I put a message on here asking for advice, only to have my post hijacked wi...

Jewels707

•1 year ago

2 Replies

Dupuytren's contracture & Hydroxycarbamide

Hi all, I have had Dupuytren's contracture developing very slowly over the last 8 to 10 years, but since starting on HU a year ago it seems to have...

Hi all, I have had Dupuytren's contracture developing very slowly over the las...

dabs121

•1 year ago

21 Replies

Thoughts on MAJIK trial outcomes

First of all, thanks to Magg for posting the ET paper by Prof Harrison. As a decidedly non-expert in the field of medical terminology, it has taken me some...

First of all, thanks to Magg for posting the ET paper by Prof Harrison. As a de...

Ovingite

•1 year ago

10 Replies

Discovery of a signaling feedback circuit that defines interferon responses in myeloproliferative neoplasms- Published: 01 April 2022

This gets a little deep, but nonetheless may explain some things: Abstract Interferons (IFNs) are key initiators and effectors of the immune response...

This gets a little deep, but nonetheless may explain some things: Abstract Int...

PhysAssist

•1 year ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2023

Besremi Rash

Paraneoplastic Syndromes and MPNs

I have Polycythemia with Jak 2 Mutations and /Thrombocytopenia

Jakavi

LDH Test with ET

A1C and PV

Combining Hydroxycarbamide and Anagrelide

exciting research

ET + JAK2

Progression

Momelotinib Found Superior to Danazol for the Treatment of Myelofibrosis

PIM1 Mutation in addition to JAK2?

Bladder damage from HU ?

Relapse, Coping with less Hope

Interferon

Encouraging news

sleepless nights

Pre MF?

Chorea and PV

Little bit of hope

Coping with itchiness and side effects of peg-interferon

Platelets and diet

PV and lung problems/findings

MPN ET, Hydroxycarbamide & wrist pain

ET related fatigue

Thank You For PegInterferon Rash Info

Advice please

Dupuytren's contracture & Hydroxycarbamide

Thoughts on MAJIK trial outcomes

Discovery of a signaling feedback circuit that defines interferon responses in myeloproliferative neoplasms- Published: 01 April 2022

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