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MPN Voice

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ET + Anagrelide

Is anyone taking Angrelide and dealing with side effects? I have ET+CALR, became resistant to Hydrea and couldn't tolerate the side effects of Interferon. Now...

Is anyone taking Angrelide and dealing with side effects? I have ET+CALR, became...

Zeppelin11

•3 days ago

8 Replies

Ruxolitinib - more news.

Hi all. Another good report on Ruxolitinib....

AirconBob

•4 months ago

10 Replies

Back on Pegasys

Went off of Pegasys for almost 6 weeks with my MPN expert's grace as I was in haematological remission from ET (with JAK2) on 45ug every two weeks. I had...

Went off of Pegasys for almost 6 weeks with my MPN expert's grace as I was in ha...

Planti

•5 months ago

14 Replies

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

Hydroxycarbimide to Ruxolitinib - 4 weeks on....

Jak2 pos PV, nine years on hydroxy and venisections... Started Rux 4 weeks ago, continuing with Hydroxy at the same time. I had a venesection booked for day...

Jak2 pos PV, nine years on hydroxy and venisections... Started Rux 4 weeks ago, ...

AirconBob

•5 months ago

8 Replies

NICE Final Guidance on Ruxolitinib for the treatment of Polycythaemia Vera

We are delighted to announce that NICE (the National Institute for Health and Care Excellence) has recently released Final Guidance recommending Ruxolitinib...

We are delighted to announce that NICE (the National Institute for Health and Ca...

Mazcd

Partner•6 months ago

15 Replies

High dose aspirin

I was put on daily full dose (325mg) aspirin with my hydroxyurea back in February for my ET. I am 74 years old. Is anyone else on this much daily aspirin?

I was put on daily full dose (325mg) aspirin with my hydroxyurea back in Februar...

jewelmaker

•6 months ago

2 Replies

Aspirin Question

Does anyone happen to know if it’s ok to take Excedrin, for a bad headache, when you have Essential Thrombocythemia & on Pegasys? Asking because I know there’s...

Does anyone happen to know if it’s ok to take Excedrin, for a bad headache, when...

Golfersmom

•6 months ago

5 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

•8 months ago

8 Replies

Besremi Supply Security Issues??

Sorry, guys - this could very much just be me being too paranoid - but I would like to ask if anybody has experienced or heard of the supply shortage issue...

Sorry, guys - this could very much just be me being too paranoid - but I would l...

Joey1025

•11 months ago

7 Replies

New evidence on the early treatment of low-risk PV patients (using IFN)

I saw this article: Final results from the Low PV study now published in the NEJM Evidence...

I saw this article: Final results from the Low PV study now published in the NEJ...

Joey1025

•11 months ago

3 Replies

Iron regulation offers new treatment hope for incurable blood cancer

Published April 4, 2023 | Originally published on MedicalXpress Breaking News-and-Events A landmark discovery linking iron regulation to a rare blood cancer...

Published April 4, 2023 | Originally published on MedicalXpress Breaking News-an...

PhysAssist

•1 year ago

8 Replies

New to the community - Aspirin side effects for ET

Hi all, Just joined the HealthUnlocked MPN Voice community :) I have had an ET diagnosis for the past 3 years and have been prescribed low dose Aspirin for...

Hi all, Just joined the HealthUnlocked MPN Voice community :) I have had an ET...

ET_Gooner

•1 year ago

22 Replies

Changing from Hydroxycarbamide to Jakavi

I am in UK and have had Primary MF for 8 years and have been taking Hydroxy all that time. Main symptom for me is high fatigue.On pretty much Maximum dose and...

I am in UK and have had Primary MF for 8 years and have been taking Hydroxy all ...

the_black_pig

•1 year ago

22 Replies

Update 7.1 - Very Good News

Very good news from the Quantitative Analysis regarding JAK2v617f Variant Allele Frequency. JAK2 V617F Mutation Analysis by Real-time PCR...

Very good news from the Quantitative Analysis regarding JAK2v617f Variant Allele...

hunter5582

•1 year ago

63 Replies

Living with ET+CALR and new to the group…Hello Everyone

Currently on a high dose of Hydro (3 pills a day) and trying to keep consistent numbers. My platelets spiked up to the millions last month because we have been...

Currently on a high dose of Hydro (3 pills a day) and trying to keep consistent ...

Zeppelin11

•1 year ago

34 Replies

Mayo Clinic Received a totally different approach to managing my MPN

Hi Everyone, Currently I am being treated for PCV and taking Coumadin (hx of Blood clots x2) and Besremi since June 2022 per my MPN specialist in Denver,...

Hi Everyone, Currently I am being treated for PCV and taking Coumadin (hx of...

JeanieRN

•2 years ago

17 Replies

increasing HCT despite Besremi

For those of you on Besremi, how long did it take to lower your Hct? I have been on it for 2.5 months and my Hct has gone from 41 to 45. I clotted off my...

For those of you on Besremi, how long did it take to lower your Hct? I have bee...

JeanieRN

•2 years ago

12 Replies

Interferon and alcohol interaction

Hi all! Since starting Pegasys about a year ago I've found that I struggle to drink alcohol anymore. I've never drunk heavily (would drink on average twice a...

Hi all! Since starting Pegasys about a year ago I've found that I struggle to d...

cgcheets

•2 years ago

9 Replies

Pegasys - Withdrawal side effects in the days prior to injection

Hi everyone, I'm Charlie, I'm 27 and have ET. I've been on Peg-interferon for the last year and I just wondered if anyone else experiences worse symptoms in...

Hi everyone, I'm Charlie, I'm 27 and have ET. I've been on Peg-interferon for t...

cgcheets

•2 years ago

19 Replies

Pegasys first dose and bad nausea

My Besremi was denied for the 2nd time with UHC Currently in the 3rd appeal with my husband’s self insured company. In the meantime I started on Pegasys 45 mcg...

My Besremi was denied for the 2nd time with UHC Currently in the 3rd appeal with...

JeanieRN

•2 years ago

8 Replies

BESREMi 4th dose

Hey, guys! I see other members are sharing their move to BESREMi, so I thought I'd add my experience. As background, I was diagnosed with polycythemia vera...

Hey, guys! I see other members are sharing their move to BESREMi, so I thought I...

lynxfluff

•2 years ago

20 Replies

New Plots for Besremi & "Beneficial"

EDIT NOV 28: See larger plot images in reply section below, these are easier to read. I posted a while ago a plot of allele data from the Conti PV study....

EDIT NOV 28: See larger plot images in reply section below, these are easier to ...

EPguy

•2 years ago

11 Replies

Extremely worried about the value of IL-6 and IL-8 explored, what should I do?

I'm 34 years old only, and have been in MF3 since 2017 diagnosed. Very bad state I was megalosplenia when I diagnosed. Now I take Ruxolitinib 7.5mg/bid /day...

I'm 34 years old only, and have been in MF3 since 2017 diagnosed. Very bad state...

merlisa

•3 years ago

5 Replies

Update 5.8 = Good news.

Just did my updated labs. On the whole, I am very pleased with how things are going. The numbers look better than 4 weeks ago. PLT now WNL at 398 – down...

Just did my updated labs. On the whole, I am very pleased with how things are g...

hunter5582

•3 years ago

74 Replies

HYDROXY ADVICE.

Just need a little advice on taking my hydroxy. I have been taking 500mg once a day for about 18months, just had a call from my consultant to say to increase...

Just need a little advice on taking my hydroxy. I have been taking 500mg once a ...

Kizzy10

•3 years ago

43 Replies

Has anyone tried EPO to help production of red blood cells?

Interested to know if it has worked for you. I’m on injections every fortnight. I’ve had four so far.

Interested to know if it has worked for you. I’m on injections every fortnight. ...

Janll

•4 years ago

16 Replies

Doctor trying out blood pressure pills on me like a guinea pig

I have a blood pressure question does anyone take metoprolol I was taking a 25 mg tartrate a day and doing okay until Coronavirus and typical stress, and now...

I have a blood pressure question does anyone take metoprolol I was taking a 25 m...

mochapie

•4 years ago

7 Replies

Does the nausea with HU diminish?

I have PCV and have generally been doing well with Pegasys except that its legendary itching has been a problem, especially in the hot, humid summer, so I...

I have PCV and have generally been doing well with Pegasys except that its legen...

pnArt

•4 years ago

19 Replies

Pegasys travel?

How to travel for long periods with Pegasys? How do you keep it cold?

Trli

•4 years ago

16 Replies

Does anyone else take warfarin

I have just been diagnosed with ET and I am due to start on Hydroxycarbamide on Wednesday - I have been on warfarin due to AF for approx 15 years - I was...

I have just been diagnosed with ET and I am due to start on Hydroxycarbamide on ...

driftstream

•4 years ago

11 Replies

Write a post or ask a question

Posts - MPN Voice | HealthUnlocked

MPN Voice

Medications posts

ET + Anagrelide

Ruxolitinib - more news.

Back on Pegasys

Hydroxycarbimide to Ruxolitinib - 4 weeks on....

NICE Final Guidance on Ruxolitinib for the treatment of Polycythaemia Vera

High dose aspirin

Aspirin Question

Jakafi: When did it relieve your itch?

Besremi Supply Security Issues??

New evidence on the early treatment of low-risk PV patients (using IFN)

Iron regulation offers new treatment hope for incurable blood cancer

New to the community - Aspirin side effects for ET

Changing from Hydroxycarbamide to Jakavi

Update 7.1 - Very Good News

Living with ET+CALR and new to the group…Hello Everyone

Mayo Clinic Received a totally different approach to managing my MPN

increasing HCT despite Besremi

Interferon and alcohol interaction

Pegasys - Withdrawal side effects in the days prior to injection

Pegasys first dose and bad nausea

BESREMi 4th dose

New Plots for Besremi & "Beneficial"

Extremely worried about the value of IL-6 and IL-8 explored, what should I do?

Update 5.8 = Good news.

HYDROXY ADVICE.

Has anyone tried EPO to help production of red blood cells?

Doctor trying out blood pressure pills on me like a guinea pig

Does the nausea with HU diminish?

Pegasys travel?

Does anyone else take warfarin

Search posts

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What age were you when your MPN was diagnosed?

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Posts - MPN Voice | HealthUnlocked

MPN Voice

Medications posts

ET + Anagrelide

Ruxolitinib - more news.

Back on Pegasys

Hydroxycarbimide to Ruxolitinib - 4 weeks on....

NICE Final Guidance on Ruxolitinib for the treatment of Polycythaemia Vera

High dose aspirin

Aspirin Question

Jakafi: When did it relieve your itch?

Besremi Supply Security Issues??

New evidence on the early treatment of low-risk PV patients (using IFN)

Iron regulation offers new treatment hope for incurable blood cancer

New to the community - Aspirin side effects for ET

Changing from Hydroxycarbamide to Jakavi

Update 7.1 - Very Good News

Living with ET+CALR and new to the group…Hello Everyone

Mayo Clinic Received a totally different approach to managing my MPN

increasing HCT despite Besremi

﻿Interferon and alcohol interaction

﻿Pegasys - Withdrawal side effects in the days prior to injection

Pegasys first dose and bad nausea

BESREMi 4th dose

New Plots for Besremi & "Beneficial"

Extremely worried about the value of IL-6 and IL-8 explored, what should I do?

Update 5.8 = Good news.

HYDROXY ADVICE.

Has anyone tried EPO to help production of red blood cells?

Doctor trying out blood pressure pills on me like a guinea pig

Does the nausea with HU diminish?

Pegasys travel?

Does anyone else take warfarin

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

Interferon and alcohol interaction

Pegasys - Withdrawal side effects in the days prior to injection