Posts - MPN Voice | HealthUnlocked

MPN Voice

10,524 members • 14,540 posts

All posts for September 2023

Good news for PV patients

Looks like NICE has approved ruxolitnib for PV patients in Wales and England.

JP1952

•9 months ago

7 Replies

#MPN series, PV&ME

Wishing everyone a Happy MPN Awareness Day! I'm excited to share this collaboration with PharmaEssentia and MPN Advocacy & Education International, which...

Wishing everyone a Happy MPN Awareness Day! I'm excited to share this collabora...

hunter5582

•9 months ago

23 Replies

covid vaccine

hi I read recently that anyone with a blood cancer can now book a further covid booster? I can’t find the information now.

hi I read recently that anyone with a blood cancer can now book a further covid ...

Brendaf

•9 months ago

15 Replies

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Statin use, survival and incidence of thrombosis among older patients with polycythemia vera and essential thrombocythemia

Conclusions These findings suggest that it may be important to incorporate statins into the therapeutic strategy for older adults with PV and ET....

Conclusions These findings suggest that it may be important to incorporate st...

Manouche

•9 months ago

14 Replies

long haul travel

I am travelling to Hongkong on a 12 hour flight soon. Any tips for the journey please? Also I shall be taking my Hydroxicarbamide tablets with me, will this...

I am travelling to Hongkong on a 12 hour flight soon. Any tips for the journey p...

DancingM

•9 months ago

13 Replies

Increase platelets

Hi everyone never posted before but regularly on here getting comfort from other people's experiences was diagnosed 2 years ago with et Jack positive...

Hi everyone never posted before but regularly on here getting comfort from othe...

Annma

•9 months ago

11 Replies

Changing from hydroxy to Analgride

Hello again to all the people on this wonderful. group. Following post from 10 days ago, when I was taken off hydroxy due to anaemia, I had appt. today, & will...

Hello again to all the people on this wonderful. group. Following post from 10 d...

Didgeridoo2

•9 months ago

8 Replies

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Mostew

•9 months ago

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platelet action level

hi all, I have been diagnosed with PV about two years ago. My consultant recommends that they monitor my blood level and treat it with venesection and a...

hi all, I have been diagnosed with PV about two years ago. My consultant recomm...

STK52

•9 months ago

11 Replies

sleep help

thought I’d come on and ask anyone got any advice or had issues sleeping with jak2 positive. I don’t want to reply on medication if any natural remedies work....

thought I’d come on and ask anyone got any advice or had issues sleeping with ja...

Chihuahua1505

•9 months ago

20 Replies

COVID and Pegylated Interferon

At my last Haematology appointment the Dr told me that Interferon helps strengthen the immune system. I have also read that Interferon has been given to some...

At my last Haematology appointment the Dr told me that Interferon helps strength...

AnitaJ

•9 months ago

6 Replies

nephrectomy

I have to have a nephrectomy because I have a tumor on my kidney and cyst I have polycythameia Vera anyone had this surgery with polycythameia

I have to have a nephrectomy because I have a tumor on my kidney and cyst I have...

Sickey

•9 months ago

24 Replies

Statins

Wondering if any one has any input on my situation.My cholesterol levels are pretty high but my cardiac calcium score is zero and MRA is normal. I've seen 2...

Wondering if any one has any input on my situation.My cholesterol levels are pre...

ERei

•9 months ago

20 Replies

Sore finger tips

Just wondering if anyone else has/is experiencing sore fingertips? I often experience mild pins and needles in my feet and hands but lately my fingertips have...

Just wondering if anyone else has/is experiencing sore fingertips? I often exper...

Turfbeg

•9 months ago

10 Replies

GI Issues

Hi I am a 59yr old female, who was diagnosed 15 years ago with ET. I started treated last year, due to count and age, with Hydroxycarbamide (9x500mg) per...

Hi I am a 59yr old female, who was diagnosed 15 years ago with ET. I started ...

Paisley24

•9 months ago

14 Replies

Beta Alanine: STOPS or STARTS itch?

Considering trying Beta Alanine to stop my PV itch, but every time I Google what makes it STOP itch (i.e., how does it work?), all I come up with are articles...

Considering trying Beta Alanine to stop my PV itch, but every time I Google what...

TwinMom88

•9 months ago

9 Replies

vitamin K2

Does anyone take vitamin K2 supplements? There are claims that it reduces calcium deposits in arteries. If so, would it cause problems for PV patients?

Does anyone take vitamin K2 supplements? There are claims that it reduces calciu...

Dan73

•9 months ago

14 Replies

Besremi and Afib

I never had Afib before but as my Besremi dosage has recently been increased, it seems like I am more fatigued and my watch is telling me I have a high...

I never had Afib before but as my Besremi dosage has recently been increased, it...

dgar

•9 months ago

10 Replies

JAK2 Equivocal 1-3% 0 PV Dx - now not being detected

Hi All A little update and question. Been a while since I was on. I have PV with JAK2 + but always at low level 1-3% which technically is below WHO criteria...

Hi All A little update and question. Been a while since I was on. I have PV wit...

LittleLuna

•9 months ago

9 Replies

Jakafi: When did it relieve your itch?

Hi all - for those on Jakafi w/ OV who felt some itch relief, how long did it take? I was diagnosed 5 mg (2x daily) but noticed no change to itch after 1...

Hi all - for those on Jakafi w/ OV who felt some itch relief, how long did it ta...

TwinMom88

•9 months ago

8 Replies

Dry achey eyes

I have ET Calr diagnosed 5 years ago on Hydroxycarbamide. Recently I have had problems with my eyes. Very achey, dry, frequent styes. My GP gave me eyedrops...

I have ET Calr diagnosed 5 years ago on Hydroxycarbamide. Recently I have had pr...

Pippapot

•9 months ago

8 Replies

Post SCT question

I am day +35. I came home from hospital after 4 weeks, then back in again a week ago with a temperature of 38. My infection markers are normal, I’ve been on...

I am day +35. I came home from hospital after 4 weeks, then back in again a week...

SRH55

•9 months ago

7 Replies

folic acid

I have read that taking a Folic supplement can help with anaemia. I have prefibrotic myelofibrosis and on hydroxycarbomide 10 x 500mg a week - platelets hover...

I have read that taking a Folic supplement can help with anaemia. I have prefibr...

kiwitraveller

•9 months ago

15 Replies

Switching Drs

In July, I was notified by my oncology clinic that my oncologist was on an emergency leave of absence with his return undetermined. 😢 I was absolutely...

In July, I was notified by my oncology clinic that my oncologist was on an eme...

K-itty

•9 months ago

10 Replies

Pegasys and increasingly low haemoglobin count

Hi I’ve been on interferon for 5 years in total and pegasys for the last 2 or 3 years for my PV. I’ve been injecting 90mg weekly until July as both my...

Hi I’ve been on interferon for 5 years in total and pegasys for the last 2 or 3...

PT99

•9 months ago

9 Replies

just diagnosed

Hi, I’m a 69 yr old retired nurse. For the past nine years I have been experiencing all the common symptoms of PV and have had three embolitic events, a DVT,...

Hi, I’m a 69 yr old retired nurse. For the past nine years I have been experienc...

Janbu

•9 months ago

6 Replies

Viena MPN meeting

I dont have a ticket to go to Viena. Maybe do you know where can find 2 tickets. Can you help me, please?Thanks

I dont have a ticket to go to Viena. Maybe do you know where can find 2 tickets...

SoledadBarcelona

•9 months ago

7 Replies

PV and loss of hair?

hi everyone, i live in Belgium and got a diagnose of PV in february this year. I have been reading a lot of the posts on MPN Voice and have learned a lot about...

hi everyone, i live in Belgium and got a diagnose of PV in february this year. I...

AnPV

•9 months ago

15 Replies

Age or illness, that is the question?

Hello everyone, I apologise if this question has been asked a plethora of times but I am a new addition to the site. I have had ET for approx. 17 years and...

Hello everyone, I apologise if this question has been asked a plethora of times...

1131

•9 months ago

35 Replies

To research

I just read an article about how to research medical info that will help prepare you for your next visit with a healthcare provider that I thought I would...

I just read an article about how to research medical info that will help prepare...

ERei

•9 months ago

3 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2023

Good news for PV patients

#MPN series, PV&ME

covid vaccine

Statin use, survival and incidence of thrombosis among older patients with polycythemia vera and essential thrombocythemia

long haul travel

Increase platelets

Changing from hydroxy to Analgride

Log in

platelet action level

sleep help

COVID and Pegylated Interferon

nephrectomy

Statins

Sore finger tips

GI Issues

Beta Alanine: STOPS or STARTS itch?

vitamin K2

Besremi and Afib

JAK2 Equivocal 1-3% 0 PV Dx - now not being detected

Jakafi: When did it relieve your itch?

Dry achey eyes

Post SCT question

folic acid

Switching Drs

Pegasys and increasingly low haemoglobin count

just diagnosed

Viena MPN meeting

PV and loss of hair?

Age or illness, that is the question?

To research

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