Posts - MPN Voice | HealthUnlocked

MPN Voice

10,832 members•15,126 posts

All posts for July 2022

Pomegranates

Hi , I read an article that said eating one pomegranate per day could be beneficial for people with PV , as it can help to thin the blood . After trying it...

Hi , I read an article that said eating one pomegranate per day could be benefic...

ranzoray

•2 years ago

11 Replies

periferal neuropathy advice

Hi ET diagnosed Feb 2015 I take 1500 mgms of Hydroxycarbamide 5 days 1000 mgms on Sat and 500 mgms on Sunday & Asprin I am being investigated for...

Hi ET diagnosed Feb 2015 I take 1500 mgms of Hydroxycarbamide 5 days 10...

Lynne-G

•2 years ago

10 Replies

How Can I Get the Best Myeloproliferative Neoplasm (MPN) Care?

Upcoming presentation by Dr. Claire Harrison w/ guest Dr. Nicole rochester. With so many exciting developments in the research pipeline for...

Upcoming presentation by Dr. Claire Harrison w/ guest Dr. Nicole rochester. ...

hunter5582

•2 years ago

5 Replies

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My experiance with vaccination and drs.

Hi Since covid injection my chest my heart my throat my all joints and specialy left arm on which i took injection shoulder eelbow and palm and all fingers...

Hi Since covid injection my chest my heart my throat my all joints and specialy...

Mamamasuma

•2 years ago

2 Replies

A study on booster doses: some had less benefit with 4th. AZ primary vax series maybe higher risk?

I just came across this study from May. It found if you held a high immune response before a 4th dose, the benefit was less. Not many have this info. But...

I just came across this study from May. It found if you held a high immune resp...

EPguy

•2 years ago

Be the first to reply

Covid Vax Long Term T-cell Immunity

I posted this in a thread, but it seems worth a top post with recent info as there are many discussions on the vaxes, immunity and boosters. "Acquired...

I posted this in a thread, but it seems worth a top post with recent info as the...

EPguy

•2 years ago

2 Replies

ET

Although I was diagnosed with ET over 10 years ago, I only know I am JAK2 negative. I have read posts on here about others being triple negative or having...

Although I was diagnosed with ET over 10 years ago, I only know I am JAK2 negati...

jodary

•2 years ago

10 Replies

Haematology report

Hello, I have telephone consultations with my haematologist every so many weeks.I arrange a blood test through my GP. My question is how can I get a copy of...

Hello, I have telephone consultations with my haematologist every so many weeks...

Juliet46

•2 years ago

16 Replies

Hydroxycarbamide and Liver,Kidneys

Hello friends, I have a question. One of the side effects, although rare, listed for Hydroxy is damage to Liver and/or kidneys. I have had a recent scan which...

Hello friends, I have a question. One of the side effects, although rare, listed...

azaelea

•2 years ago

27 Replies

Reactions to Covid-19 Vaccination?

I see nobody mentioning debilitating side effects of the covid-19 vaccinations. How come? My experiences(o better each time) have been nothing short of...

I see nobody mentioning debilitating side effects of the covid-19 vaccinations. ...

JackLina

•2 years ago

61 Replies

Dr in Boston recommendations?

Hi, my father was diagnosed with a "blood cancer" about a year ago. Unfortunately he or my mother do not hear very well (and may have gotten it wrong) and it...

Hi, my father was diagnosed with a "blood cancer" about a year ago. Unfortunat...

Annt64

•2 years ago

5 Replies

Polycethmia Vera and tinnitus

I have been diagnosed with PV about 18 months agonand have been having regular phlebotomies to bring down my Haematocrit . Now at about.49. I have ringing in...

I have been diagnosed with PV about 18 months agonand have been having regular ...

Paul1214

•2 years ago

8 Replies

My just diagnosed 3 weeks ago

Hi everyone this is my first post, I am 57 and just been diagnosed with mf, I have horrendous pain in my right chest, under shoulder blade, under arm and my...

Hi everyone this is my first post, I am 57 and just been diagnosed with mf, I ha...

Preston25

•2 years ago

6 Replies

RED BRUISING PV jack 2 +

Although my bloods came back good 2 weeks ago, I have developed in the past week red bruising on my left hand and lower forearm, I look like a leopard. Has...

Although my bloods came back good 2 weeks ago, I have developed in the past week...

Chez1947

•2 years ago

9 Replies

Dr Mesa on MF prognostics, Rux and SCT

Some detailed info in Dr Mesa's thoughts in a 2020 interview I came across: -For some MF patients Rux is working well and long term: <<There are patients from...

Some detailed info in Dr Mesa's thoughts in a 2020 interview I came across: -For...

EPguy

•2 years ago

15 Replies

Struggling with symptoms

Diagnosed pv November.....on Hydroxyurea, aspirin and venesections...haematocrit is just below target but struggling with symptoms. Haematology nurses...

Diagnosed pv November.....on Hydroxyurea, aspirin and venesections...haematocrit...

T1960

•2 years ago

20 Replies

MY COVID, HOSPITAL, LOW SODIUM, Vaccines

Dear all, I’m 57, ET. Was harmed by the Pfizer vaccine (veins and Vagus Nerve) and after a year, do not count as vaccinated. I was treated for these problem...

Dear all, I’m 57, ET. Was harmed by the Pfizer vaccine (veins and Vagus Nerve) a...

Anag

•2 years ago

33 Replies

Dx of PV confirmed

Hi all. So had phone call from my haematologist today to confirm a Dx of PV. I am off to sunny climates today for holiday so he has sent a letter to my GP to...

Hi all. So had phone call from my haematologist today to confirm a Dx of PV. I ...

LittleLuna

•2 years ago

2 Replies

What is the maximum safe dose of hydroxyurea/hydroxycarbamide?

I received my first MPN diagnosis about 7 weeks ago: PMF, stage 2, calreticulin positive (52-bp deletion mutant) without other somatic mutations. Initial...

I received my first MPN diagnosis about 7 weeks ago: PMF, stage 2, calreticulin ...

TLJ-1

•2 years ago

21 Replies

COVID got me!

I had my 5th vaccine just 4 weeks ago. I am now on day 6 of Covid. I dread to think what might have happened to me if I hadn’t had all that protection…I am...

I had my 5th vaccine just 4 weeks ago. I am now on day 6 of Covid. I dread to th...

Peachjoy

•2 years ago

53 Replies

Blood transfusions causing dramatic reactions

I understand some MPN sufferers have blood transfusions/top-ups from time to time. Do any of you have adverse reactions to having this "new" blood in your...

I understand some MPN sufferers have blood transfusions/top-ups from time to tim...

jointpain

•2 years ago

5 Replies

PEGASUS S.E

Lovely Day my ET friends... wanna ask.. How is ur feel with INF pegasus..any side effect is there.. as my hem advised me for it and said forever...

Lovely Day my ET friends... wanna ask.. How is ur feel with INF pegasus..any sid...

khaledkhalefa2000

•2 years ago

8 Replies

3 Peg injections later

Hi My Friends! I hope everyone is doing well! Its been very hot and humid, here. I don’t appreciate it! LOL. I have had 3 Peg injections and have my 4th this...

Hi My Friends! I hope everyone is doing well! Its been very hot and humid, here....

Wewo01

•2 years ago

16 Replies

More on CHR vs Allele reduction on INF

I'm working on a discussion of CHR vs molecular response (MR or allele burden, AB) on INF. In a recent post I discussed CHR correlates to MR....

I'm working on a discussion of CHR vs molecular response (MR or allele burden, A...

EPguy

•2 years ago

7 Replies

5th vaccine

Hi, I have ET diagnosed 2017. I had my 5th vaccine today. I was worried about having this one., didn't worry me having the other 4 but for some reason been...

Hi, I have ET diagnosed 2017. I had my 5th vaccine today. I was worried abou...

linphy

•2 years ago

4 Replies

Fedratinib

Good afternoon I hope everybody is well and enjoying the joys of Wimbledon !! I would be grateful to receive any feedback from anybody currently being treated...

Good afternoon I hope everybody is well and enjoying the joys of Wimbledon !! I...

kevinbros

•2 years ago

13 Replies

MPN Specialist, pregnancy miscarriage

Dear all I am 37 years old I have jak2 positive essential Thrombocytosis I recently suffered a miscarriage unfortunately. As all miscarriages are it was very...

Dear all I am 37 years old I have jak2 positive essential Thrombocytosis I rece...

Mood2020

•2 years ago

11 Replies

Persistent fatigue induced by interferon-alpha

I sort of randomly came across this one. https://www.sciencedirect.com/science/article/pii/S0306453018301963 <<Patients who develop persistent fatigue...

I sort of randomly came across this one. https://www.sciencedirect.com/science...

EPguy

•2 years ago

7 Replies

Remember the trial I inquired about?

It’s a trial for Rusfertide. Here is a little of what they sent me. They called me today too. Its done in Southern Florida and there would be several visits....

It’s a trial for Rusfertide. Here is a little of what they sent me. They called ...

Barbiebreath

•2 years ago

1 Reply

Platelets up

I changed to Anagralide 4 weeks ago. 2 weeks ago I had a blood count and my platelets reduced by around 100.my haemotoligist upped my dose slightly. I went...

I changed to Anagralide 4 weeks ago. 2 weeks ago I had a blood count and my plat...

JeniMac

•2 years ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2022

Pomegranates

periferal neuropathy advice

How Can I Get the Best Myeloproliferative Neoplasm (MPN) Care?

My experiance with vaccination and drs.

A study on booster doses: some had less benefit with 4th. AZ primary vax series maybe higher risk?

Covid Vax Long Term T-cell Immunity

ET

Haematology report

Hydroxycarbamide and Liver,Kidneys

Reactions to Covid-19 Vaccination?

Dr in Boston recommendations?

Polycethmia Vera and tinnitus

My just diagnosed 3 weeks ago

RED BRUISING PV jack 2 +

Dr Mesa on MF prognostics, Rux and SCT

Struggling with symptoms

MY COVID, HOSPITAL, LOW SODIUM, Vaccines

Dx of PV confirmed

What is the maximum safe dose of hydroxyurea/hydroxycarbamide?

COVID got me!

Blood transfusions causing dramatic reactions

PEGASUS S.E

3 Peg injections later

More on CHR vs Allele reduction on INF

5th vaccine

Fedratinib

MPN Specialist, pregnancy miscarriage

Persistent fatigue induced by interferon-alpha

Remember the trial I inquired about?

Platelets up

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

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Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2022

Pomegranates

﻿periferal neuropathy advice

How Can I Get the Best Myeloproliferative Neoplasm (MPN) Care?

My experiance with vaccination and drs.

A study on booster doses: some had less benefit with 4th. AZ primary vax series maybe higher risk?

Covid Vax Long Term T-cell Immunity

ET

Haematology report

Hydroxycarbamide and Liver,Kidneys

Reactions to Covid-19 Vaccination?

Dr in Boston recommendations?

Polycethmia Vera and tinnitus

My just diagnosed 3 weeks ago

RED BRUISING PV jack 2 +

Dr Mesa on MF prognostics, Rux and SCT

Struggling with symptoms

MY COVID, HOSPITAL, LOW SODIUM, Vaccines

Dx of PV confirmed

What is the maximum safe dose of hydroxyurea/hydroxycarbamide?

COVID got me!

Blood transfusions causing dramatic reactions

PEGASUS S.E

3 Peg injections later

More on CHR vs Allele reduction on INF

5th vaccine

Fedratinib

MPN Specialist, pregnancy miscarriage

Persistent fatigue induced by interferon-alpha

Remember the trial I inquired about?

Platelets up

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

periferal neuropathy advice