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MPN Voice

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Idiopathic Erythrocytosis

Hi all Sorry I haven't been on here for a while and I hope you are all doing ok. A little while ago my condition was changed from Polycythemia to Idiopathic...

Hi all Sorry I haven't been on here for a while and I hope you are all doing ok...

Nozboz

•1 day ago

8 Replies

A big thank you

A big thank you to all MPN clinicians and MPN VOICE staff who organised an excellent patient day in London yesterday. Thank you for giving up your Saturday...

A big thank you to all MPN clinicians and MPN VOICE staff who organised an exce...

artydutch

•1 day ago

8 Replies

jak 2 positive

just had my blood test come back as jak 2 positive which i paid for private as my hb was 19.8 on latest ahn i think hct 0.58 but my gp wouildnt order the test...

just had my blood test come back as jak 2 positive which i paid for private as m...

djleighp

•2 days ago

19 Replies

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Clinical and Immune Effects of Peri-Transplantation JAK Inhibition for Myelofibrosis @AjHematology

👉using JAK inhibitors until engraftment is safe 👉 improved efficacy signals (excellent engraftment, reduced acute GVHD) #mpnsm...

👉using JAK inhibitors until engraftment is safe 👉 improved efficacy signals ...

william-Indo

•2 days ago

2 Replies

BMB results copy troubles.

Wondering if anyone else in Ireland is having the same issue. I had a BMB in the summer and only recently have I asked for a copy of the results, as in Ireland...

Wondering if anyone else in Ireland is having the same issue. I had a BMB in the...

Charm33

•3 days ago

23 Replies

Interferon

Hello, I am very grateful for this forum. By reading the many posts I have gained much better insight into the disease. I was diagnosed with PV 2 years ago. I...

Hello, I am very grateful for this forum. By reading the many posts I have gaine...

AnPV

•3 days ago

12 Replies

Living with MPNs Day

Anyone else on here going to the London forum today? Hope to see you there!

AndyT

•3 days ago

3 Replies

Beta Blockers, any experience?

I've had quite the journey since April with what I call Cluster Migraines. I'm 63, ET JaK2 V617F. Aspirin daily, 90mcg Pegysis Interferon every 8 weeks Had...

I've had quite the journey since April with what I call Cluster Migraines. I'm 6...

Buddhability

•3 days ago

12 Replies

Back in hospital

Haven't posted here for some time as everything seemed to be going reasonably well after my SCT back in February. Today I got a call to come into hospital as...

Haven't posted here for some time as everything seemed to be going reasonably we...

Flyingsteamer

•3 days ago

21 Replies

Hydroxycarbamide and Serum Bilirubin

I am wondering if anyone else who is taking Hydroxycarbamide has a high Bilirubin reading. I have , what I think is too high which fluctuates within the 30’s...

I am wondering if anyone else who is taking Hydroxycarbamide has a high Bilirubi...

azaelea

•3 days ago

6 Replies

Blood test results

Hi all Sorry not been on for a while ,only had my appointment over the phone 8th November nothing much to say really that my platelets count 600 fairly...

Hi all Sorry not been on for a while ,only had my appointment over the phone 8...

Jody00

•4 days ago

4 Replies

inherited

Hello all can MpN be inherited , reason I had my late Father , did not have enough platelets and attended hospital what I thought was a drip or for...

Hello all can MpN be inherited , reason I had my late Father , did not have eno...

Birdlady2021

•5 days ago

4 Replies

Tooth Sensitivity

Hi All, On Ropeg-Interferon, 500 Mcg x 2/month since January. I have recently had a tooth repaired, and two fillings on two other teeth (last 30 days)....

Hi All, On Ropeg-Interferon, 500 Mcg x 2/month since January. I have recently ...

hsdale3

•5 days ago

4 Replies

Update

My platelets are now under 600, just! A big improvement from when they were over 1000 a few weeks ago. Local doctor wants me to carry on with Momelotinib and...

My platelets are now under 600, just! A big improvement from when they were over...

lizzziep

•6 days ago

33 Replies

Guys Visit

Guys MPN staff are amazing . The visit was well worth the travel and overnight stay that ensured I arrived on time. Bloods, history and vitals all done...

Guys MPN staff are amazing . The visit was well worth the travel and overnight s...

Janbu

•6 days ago

10 Replies

Allele burden reduction!

I have been on Pegasys for the two years since my diagnosis of PV at age 59, initially on a weekly dose of 45 mcg and for the last year on 67.5 a fortnight....

I have been on Pegasys for the two years since my diagnosis of PV at age 59, ini...

Lucylottie

•7 days ago

40 Replies

Breathless

Recently my hydroxy dose was increased to 1500mg / 2000mg on alternating days. I dont know if this is a coincidence or related but im getting strangely out of...

Recently my hydroxy dose was increased to 1500mg / 2000mg on alternating days. I...

BloodZero

•7 days ago

9 Replies

raised platelets when I been normal for ages

Hi had call from hospital o my latest blood test done on November 10th ! I was asked if I had a recent infection ? Not that I know of , however I did have 2...

Hi had call from hospital o my latest blood test done on November 10th ! I was ...

Birdlady2021

•7 days ago

13 Replies

Break from hydroxy

Has anyone ever taken a break from hydroxy and if so were there any repercussions ? Platelets currently in 700s but were higher before, currently on 1 x500mg...

Has anyone ever taken a break from hydroxy and if so were there any repercussion...

jodary

•7 days ago

18 Replies

Pegasus to Besremi switch advice please

Hi I just wanted to ask people's thoughts on switching from peagsus to besremi. I am taking peg 45mcg weekly so classed as high user due to the wastage on only...

Hi I just wanted to ask people's thoughts on switching from peagsus to besremi. ...

Cityreach

•7 days ago

9 Replies

New advances in the role of JAK2 V617F mutation in myeloproliferative neoplasms

"The JAK2 V617F mutation is the most common driver gene in myeloproliferative neoplasm (MPN), which means that the JAK/STAT signaling pathway is persistently...

"The JAK2 V617F mutation is the most common driver gene in myeloproliferative ne...

Manouche

•8 days ago

6 Replies

Mycophenolate

Hi everyone, I wonder if anyone else has been on mycophenolate for a few months, but managed to change to something else with less side effects? My main side...

Hi everyone, I wonder if anyone else has been on mycophenolate for a few months,...

Georgehb

•8 days ago

4 Replies

Thank you

Thank you to everyone who replied to my query abt when to arrive at Guys. : my son is taking a day off work to come to the appointment with me so I do want to...

Thank you to everyone who replied to my query abt when to arrive at Guys. : my ...

Gipsy123

•8 days ago

1 Reply

Thank you

Thank you to everyone who replied to my query abt when to arrive at Guys. : my son is taking a day off work to come to the appointment with me so I do want to...

Thank you to everyone who replied to my query abt when to arrive at Guys. : my ...

Gipsy123

•8 days ago

2 Replies

Polycythemia Vera and Osteoporosis

I have had PV for four years and was just diagnosed with Osteoporosis. I just found out on the patient portal so I haven’t met with the doctor yet. Does anyone...

I have had PV for four years and was just diagnosed with Osteoporosis. I just fo...

Sheena2020

•8 days ago

3 Replies

New Type 2 Jak inhibitor just started trial for MF

Quick message: There are now 2 exciting new pills in early trials for Jak2 disease. -- Rux is a type1 Jak-i. It targets the "active configuration" of Jak2....

Quick message: There are now 2 exciting new pills in early trials for Jak2 disea...

EPguy

•8 days ago

7 Replies

Cause of Polycythaemia Vera

Hello, I appreciate there is probably not a definitive answer to my question but I was wondering if there could be a link between platelet donation and...

Hello, I appreciate there is probably not a definitive answer to my question but...

PolarFlo

•8 days ago

4 Replies

ET and sexual activity

What is risk for male partner when female is on Hydroxicarbamide please?

Whitegate

•8 days ago

6 Replies

Besremi Erfahrungen

Hallo zusammen Wie sind eure Erfahrungen mit Besremi? Bitte eure Erfahrungen mit mir teilen! Danke vielmals☺️

Hallo zusammen Wie sind eure Erfahrungen mit Besremi? Bitte eure Erfahrungen ...

Bony_bony

•9 days ago

2 Replies

do i need to get to guys before apt time for bloods.

Hi I’m being seen at Guys again after a long gap. I have an appointment for 10.45. Does anyone who's been seen at Guts recently know if I should get there...

Hi I’m being seen at Guys again after a long gap. I have an appointment for 10.4...

Gipsy123

•9 days ago

12 Replies

Write a post or ask a question

Posts - MPN Voice | HealthUnlocked

MPN Voice

Idiopathic Erythrocytosis

A big thank you

jak 2 positive

Clinical and Immune Effects of Peri-Transplantation JAK Inhibition for Myelofibrosis @AjHematology

BMB results copy troubles.

Interferon

Living with MPNs Day

Beta Blockers, any experience?

Back in hospital

Hydroxycarbamide and Serum Bilirubin

Blood test results

inherited

Tooth Sensitivity

Update

Guys Visit

Allele burden reduction!

Breathless

raised platelets when I been normal for ages

Break from hydroxy

Pegasus to Besremi switch advice please

New advances in the role of JAK2 V617F mutation in myeloproliferative neoplasms

Mycophenolate

Thank you

Thank you

Polycythemia Vera and Osteoporosis

New Type 2 Jak inhibitor just started trial for MF

Cause of Polycythaemia Vera

ET and sexual activity

Besremi Erfahrungen

do i need to get to guys before apt time for bloods.

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