Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for November 2022

Rux and heartburn

Has anybody else who takes Rux experienced heartburn as a new experience?I have been taking Rux for one year, prior to that Hydrea for two years, and aspirin...

Has anybody else who takes Rux experienced heartburn as a new experience?I have ...

JP1952

•2 years ago

1 Reply

A Newer Type Flu Vaccine, Stronger Dose

I recently posted on selecting the Moderna Covid vax for its larger dose. There is actually a similar choice available for the flu vax. Flu vax is...

I recently posted on selecting the Moderna Covid vax for its larger dose. There...

EPguy

•2 years ago

9 Replies

want some consistency

hi folks, just want a bit of a moan, had bloods done last Tuesday, and a telephone conversation was booked for the following day at 12.15 pm and hour and a...

hi folks, just want a bit of a moan, had bloods done last Tuesday, and a telepho...

Superwoman

•2 years ago

23 Replies

Want to take advantage of all our features? Just log in!

Anybody use NSAIDS, in particular cox-2 inhibitors?

Use of NSAIDS is strongly discouraged for those of us using an anticoagulant due to the small risk of gastrointestinal bleeding that NSAIDS pose. Using an...

Use of NSAIDS is strongly discouraged for those of us using an anticoagulant due...

TLJ-1

•2 years ago

5 Replies

Withdrawal from Jakafi

I've been on Jakafi for about two months now, and I'm afraid that it doesn't seem to be working out for me. For the first six weeks, everything looked good:...

I've been on Jakafi for about two months now, and I'm afraid that it doesn't se...

sbs_patient

•2 years ago

52 Replies

SCT update

Hello friends, I have been out of hospital for a few weeks now and am just starting to feel stronger. Today is day +65.Blood counts are slowly improving but I...

Hello friends, I have been out of hospital for a few weeks now and am just start...

Otterfield

•2 years ago

60 Replies

Some review of MF from Dr. Nico

https://twitter.com/NicoGagelmann/status/1588594814626693120?t=njrrMJA4tORrAq1muryVSA&s=19 Happy weekend

https://twitter.com/NicoGagelmann/status/1588594814626693120?t=njrrMJA4tORrAq1mu...

william-Indo

•2 years ago

1 Reply

Besremi has (No?) Preservative

This is info is just for curious types, nothing of concern or worry for us Bes users. -Most injectables have some means for preserving. Refrigerating is a...

This is info is just for curious types, nothing of concern or worry for us Bes u...

EPguy

•2 years ago

7 Replies

hip replacement soon

my hematologist wants me to get my platelets under 400 for my surgery so I had to up my hydroxyurea to every day instead of 4 a week. He’s ok with them in the...

my hematologist wants me to get my platelets under 400 for my surgery so I had t...

Pounds11

•2 years ago

6 Replies

Shingles vaccine

Has anyone here has the shingles vaccine? I know that the usual one is a live vaccine but the nurse at the surgery told me that there is a two-dose non-live...

Has anyone here has the shingles vaccine? I know that the usual one is a live va...

Garstongal

•2 years ago

30 Replies

Living with MPNs conference 5th November London

Hi, Does anybody know if tomorrows’s forum will be recorded and available to watch at a later date? Although I have registered to attend virtually I note it...

Hi, Does anybody know if tomorrows’s forum will be recorded and available to wa...

JP1952

•2 years ago

5 Replies

Hydrea and Platelets

Hi guys, start taking Hydrea a month ago, went for blood test, Platelets went up to 1566 when I started the hydrea they were 1321. I am quite worried I took 3...

Hi guys, start taking Hydrea a month ago, went for blood test, Platelets went up...

georgevanier

•2 years ago

38 Replies

Navitoclax

Has someone of you dear MPN people been a part of a Navitoclax study? It is offered to me and I think I'm going to start with the study soon. They are taking...

Has someone of you dear MPN people been a part of a Navitoclax study? It is offe...

cvita71

•2 years ago

5 Replies

Checks up appointments

Hi guys Haven't been om a while has had quite a few appointments and still git few on the way ,I mentioned symptoms to my haematologist in August she saw me...

Hi guys Haven't been om a while has had quite a few appointments and still git f...

Jody00

•2 years ago

3 Replies

Besremi

anyone else on besremi and being weaned off hydroxyurea then the numbers are creeping up? Finally after nine months of besremi my platelets were in the normal...

anyone else on besremi and being weaned off hydroxyurea then the numbers are cr...

Ggrana3192

•2 years ago

5 Replies

a bit anxious!

those of you that know me know that I do my best not to worry about tomorrow. However this is happening today and is making me a bit anxious about what it...

those of you that know me know that I do my best not to worry about tomorrow. Ho...

beetle

•2 years ago

14 Replies

ET/MPN and vascular calcification

Has anyone studied issues related to ET/MPN and vascular calcification?

Softy125

•2 years ago

10 Replies

Dr. Fleischman shares the latest treatments for MF, when a clinical trial should be considered and the MPN - autoimmune disease connection.

Hope you enjoy the interview. https://www.pvreporter.com/is-there-a-connection-between-mpns-and-autoimmune-diseases/ Best, David

Hope you enjoy the interview. https://www.pvreporter.com/is-there-a-connection-...

PVReporter

•2 years ago

14 Replies

Ramipril

Hello I wondered if anyone takes Ramipril alongside Hydroxycarbamide. Thank you

Hello I wondered if anyone takes Ramipril alongside Hydroxycarbamide. Thank you ...

Juliet46

•2 years ago

14 Replies

Two Besremi doses and the itching begins!!

So I am off the Bomedemstadt clinical trial and just began Besremi on 10/9. I am on 50 mcg, which I have had twice thus far. My numbers didn't budge much at...

So I am off the Bomedemstadt clinical trial and just began Besremi on 10/9. I ...

Miriammusic

•2 years ago

9 Replies

MPN experts invaluable.

Thought I would share this useful information . Having been treated by my local Haemotology Department since early this year upon my ET Jak2...

Thought I would share this useful information . Having been treated b...

Exeter21

•2 years ago

94 Replies

Second opinion

Hi,I suffer from polycythaemia vera and have done so for the last 7 years. I am on hydroxycarbamide, which they have kept increasing the dosage, but it is...

Hi,I suffer from polycythaemia vera and have done so for the last 7 years. I am ...

Georgehb

•2 years ago

11 Replies

9 month Besremi update

Hi All, Latest test results showed that I need a phlebotomy: My HCT was 44.5 and though I'm slightly increasing my Besremi dose (now at 160ish), it hasn't...

Hi All, Latest test results showed that I need a phlebotomy: My HCT was 44.5 a...

Elizka

•2 years ago

14 Replies

What Happens When you go off Jakafi

I fell Friday night on my knee and beinh on blood thinner, the hematoma under my knee was huge. I called the EMT’s who transported me to ER by ambulance who...

I fell Friday night on my knee and beinh on blood thinner, the hematoma under my...

Buggerbear

•2 years ago

25 Replies

ckd aahhh

Had rug pulled out from under me Just learnt I have stage 2 ckd maybe down to Hydroxy ? Anyone else told this ?

Had rug pulled out from under me Just learnt I have stage 2 ckd maybe down to...

Hidden

•2 years ago

12 Replies

headaches & Peg Interferon

on my 4 th dose of Peg Interferon. First 2 we’re ok headaches on day after injection. But after 3 & 4th injections I have constant headache & dizziness....

on my 4 th dose of Peg Interferon. First 2 we’re ok headaches on day after i...

Exeter21

•2 years ago

6 Replies

B12 deficiency in MF patients

https://pubmed.ncbi.nlm.nih.gov/25730455/ Hi. I think I’ve posted this before, but worth re doing as B12 deficiency js nasty, but very fixable. Here in the...

https://pubmed.ncbi.nlm.nih.gov/25730455/ Hi. I think I’ve posted this before, ...

Rachelthepotter

•2 years ago

3 Replies

Pegasys dosage question

I have ET and am Jak 2 positive. I was on hydroxyurea for two years, but the last six months were difficult because I was extremely nauseous and tired. I am...

I have ET and am Jak 2 positive. I was on hydroxyurea for two years, but the l...

Island-Lady

•2 years ago

25 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2022

Rux and heartburn

A Newer Type Flu Vaccine, Stronger Dose

want some consistency

Anybody use NSAIDS, in particular cox-2 inhibitors?

Withdrawal from Jakafi

SCT update

Some review of MF from Dr. Nico

Besremi has (No?) Preservative

hip replacement soon

Shingles vaccine

Living with MPNs conference 5th November London

Hydrea and Platelets

Navitoclax

Checks up appointments

Besremi

a bit anxious!

ET/MPN and vascular calcification

Dr. Fleischman shares the latest treatments for MF, when a clinical trial should be considered and the MPN - autoimmune disease connection.

Ramipril

Two Besremi doses and the itching begins!!

MPN experts invaluable.

Second opinion

9 month Besremi update

What Happens When you go off Jakafi

ckd aahhh

headaches & Peg Interferon

B12 deficiency in MF patients

Pegasys dosage question

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2022

Rux and heartburn

A Newer Type Flu Vaccine, Stronger Dose

want some consistency

Anybody use NSAIDS, in particular cox-2 inhibitors?

Withdrawal from Jakafi

SCT update

Some review of MF from Dr. Nico

Besremi has (No?) Preservative

hip replacement soon

Shingles vaccine

Living with MPNs conference 5th November London

Hydrea and Platelets

Navitoclax

Checks up appointments

Besremi

a bit anxious!

ET/MPN and vascular calcification

Dr. Fleischman shares the latest treatments for MF, when a clinical trial should be considered and the MPN - autoimmune disease connection.

Ramipril

Two Besremi doses and the itching begins!!

MPN experts invaluable.

Second opinion

9 month Besremi update

What Happens When you go off Jakafi

﻿ckd aahhh

headaches & Peg Interferon

B12 deficiency in MF patients

Pegasys dosage question

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

ckd aahhh