Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for August 2021

Anyone know good haematologist specialising in PV in Surrey/Hampshire/Berkshire area please?

I’m new to the site and am being referred to haematology but I wondered if there was anyone who may be particularly interested in PV in my area that someone...

I’m new to the site and am being referred to haematology but I wondered if there...

jaxwanne

•3 years ago

30 Replies

Was wandering how you find out what stage your MF is

I have been asked this question but never been told , sorry if it is a dumb question! I would think I am probably at early stages as there has been no urgency...

I have been asked this question but never been told , sorry if it is a dumb ques...

indy22

•3 years ago

3 Replies

MF and Travel Insurance

Trying to look ahead. I’m sure this has been asked before. Any suggestions about travel insurance, of cause when it’s safe to do so

Trying to look ahead. I’m sure this has been asked before. Any suggestions about...

Grizly

•3 years ago

4 Replies

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Epoietin injections

I'm wondering how quickly it might be possible to feel the effects of epoietin. My kidneys are making it but my haem thought it was worth giving it a go for...

I'm wondering how quickly it might be possible to feel the effects of epoietin. ...

MaggieSylvie

•3 years ago

17 Replies

Very high B12 blood results

Hi all. I am post ET MF Calr2 ASXL and TET2 on Pegasys 90 units per week for last 8 mths. MF diagnosed last November via BMB Aged 64. Had to come off...

Hi all. I am post ET MF Calr2 ASXL and TET2 on Pegasys 90 units per week for las...

AnBee

•3 years ago

16 Replies

Boosting immune system.

Hoping someone can help me if they’ve used Reishi or Astragalus to boost their immune system ? How has it been of help ? I’m currently taking 90mcg Pegasys...

Hoping someone can help me if they’ve used Reishi or Astragalus to boost their i...

21Rosie

•3 years ago

5 Replies

Encouraging consultation

Hi all again I just thought I'd share some of the regular telephone conversation with my MPN specialist this morning. She implied that recent research is now...

Hi all again I just thought I'd share some of the regular telephone conversation...

Inclement

•3 years ago

11 Replies

Azacitidine side effect

I have MF and have been on Jakafi for over 2 years. During this time my spleen has enlarged to fill my stomach. It is not reducing, so my Haematologist...

I have MF and have been on Jakafi for over 2 years. During this time my spleen h...

billybrock

•3 years ago

3 Replies

Side effects of JAKAFI

After severe side effects of HU I was lucky enough to be prescribed JAKAFI.. I was so delighted I thought it was going to be the answer to my problems. Sadly...

After severe side effects of HU I was lucky enough to be prescribed JAKAFI.. I w...

Heather270240

•3 years ago

23 Replies

Any IL-6 inhibitor or IL6 receptor inhibitor situation and Liver total protein issue

I would like to ask whether there are such patients with myelofibrosis. Even if they take Ruxolitinib, and take interferon at the same time. The total protein...

I would like to ask whether there are such patients with myelofibrosis. Even if ...

merlisa

•3 years ago

2 Replies

Ugly disease

Hi everyone…. Not having a good day and just wondering if anyone else feels the way I do. I call this PV an ugly disease because it has taken away all the...

Hi everyone…. Not having a good day and just wondering if anyone else feels the ...

Hidden

•3 years ago

28 Replies

Side effects of PEG

In discussing the pros/cons of moving from Hydroxy Urea to PEG Interferon, my MPN specialist citied one side effect of PEG as the possibility of activating...

In discussing the pros/cons of moving from Hydroxy Urea to PEG Interferon, my MP...

jevans59

•3 years ago

5 Replies

Interesting view on Booster Vaccines from Dr.Gwen Nichols, chief Medical Officer L&L Society/Blood Cancer Patients

This Transcript is available on Patient Power website which came to my notice. Sorry I’m not sure how to post a Link onto my comments on MPN Voice but it’s...

This Transcript is available on Patient Power website which came to my notice. S...

azaelea

•3 years ago

3 Replies

First Appointment re Stem Cell Transplant

This week I have my first appointment with a stem cell transplant specialist. I haven't made up my mind yet and I'm seeing this as a fact finding appointment....

This week I have my first appointment with a stem cell transplant specialist. I ...

Otterfield

•3 years ago

31 Replies

Antibody testing in the NHS

I was interested to read this morning that the NHS in the UK are going to offer a proportion of patients who have tested positive with a PCR test the option of...

I was interested to read this morning that the NHS in the UK are going to offer ...

Inclement

•3 years ago

5 Replies

LDH

I know that high LDH is associated with progression to MF although could be lots of other reasons for a high LDH. However is it possible to have MF and not...

I know that high LDH is associated with progression to MF although could be lots...

Paul123456

•3 years ago

9 Replies

Platelet about 1.2 million, covid vaccine?

Hi anyone done with vaccine ? And at the time of vaccine platelets quite high? Any side effects? I had covid last month, my platelets are usually around 600k...

Hi anyone done with vaccine ? And at the time of vaccine platelets quite high? A...

annlauriz

•3 years ago

3 Replies

Pregnant and having ET

Hi everyone. I am 6 weeks pregnant and was on plavix for my ET. But now dr. Wants me to put on aspirin, as plavix is not safe during pregnancy. Anyone who...

Hi everyone. I am 6 weeks pregnant and was on plavix for my ET. But now dr. Want...

mustabshra

•3 years ago

7 Replies

Hydroxyurea hair loss

Who else experienced hair loss have ET?

shiela23

•3 years ago

23 Replies

Interferon Rash

Hi guys I am on my second weekly injection of Interferon. When I went to inject into my tummy area I noticed the site of my first injection was a red...

Hi guys I am on my second weekly injection of Interferon. When I went to injec...

jillydabrat

•3 years ago

5 Replies

Who has had Covid?

Hello all! Was curious how many of us MPN-ers have had Covid? I saw some older posts like this, but with this variant thought I’d ask again. Hopefully...

Hello all! Was curious how many of us MPN-ers have had Covid? I saw some older ...

Mamab83

•3 years ago

43 Replies

Covid 19 antibody test

Can anyone educate me on the ELISA IgG and IgM anti SARS-CoV 2 test results?

ladyanello

•3 years ago

Be the first to reply

Querying Pegasus dose

Hi everyone I’d be really grateful to hear from anyone who has experience of Pegasys lowering their counts below normal but no reduction in dose being...

Hi everyone I’d be really grateful to hear from anyone who has experience of Peg...

Mymble

•3 years ago

4 Replies

Afib

Have others with ET had AFib? I haven’t noticed any posts about it. I am now taking Eliquis and 75 mg of Metropolol. I am waiting to see an...

Have others with ET had AFib? I haven’t noticed any posts about it. I am now t...

Cookiebaker

•3 years ago

12 Replies

Texas MPN Workshop 2021 | Promising trials in polycythemia vera

Abdulraheem Yacoub, MD, MBBS, The University of Kansas, Westwood, KS, discusses upcoming trials investigating the treatment of polycythemia vera, namely trials...

Abdulraheem Yacoub, MD, MBBS, The University of Kansas, Westwood, KS, discusses ...

Manouche

•3 years ago

1 Reply

Texas MPN Workshop

Hopefully something for everybody https://www.vjhemonc.com/event/texas-mpn-workshop-2021/

Hopefully something for everybody https://www.vjhemonc.com/event/texas-mpn-work...

Paul123456

•3 years ago

2 Replies

Elevated Liver Enzymes (ALT and AST)?

Anyone deal with elevated liver numbers? Its become a struggle since increasing from 25mg to 50mg Peg. Last time I didnt touch alcohol for two weeks and both...

Anyone deal with elevated liver numbers? Its become a struggle since increasing ...

JT_Marlin

•3 years ago

3 Replies

ET - Pregnancy

I’m new to forum. Diagnosed in 2017 with ET, JAK2+. Baby aspirin. Recently had my check 6 month review and all ok. My platelets are stable at ~850. We’re...

I’m new to forum. Diagnosed in 2017 with ET, JAK2+. Baby aspirin. Recently had m...

Anniepops112

•3 years ago

1 Reply

Vaccine Booster

I went ahead with the 3rd dose of the Moderna vaccine as the PEG has been reducing the leukocytes, LYMPH (the anti-viral) in particular. I did have a...

I went ahead with the 3rd dose of the Moderna vaccine as the PEG has been reduc...

hunter5582

•3 years ago

23 Replies

Thrombos up every summer!

Has anyone noticed this in their tests? Since my diagnosis, my thrombos are always at their lowest in springs and go way up every July/August, then return to...

Has anyone noticed this in their tests? Since my diagnosis, my thrombos are alwa...

Anag

•3 years ago

19 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2021

Anyone know good haematologist specialising in PV in Surrey/Hampshire/Berkshire area please?

Was wandering how you find out what stage your MF is

MF and Travel Insurance

Epoietin injections

Very high B12 blood results

Boosting immune system.

Encouraging consultation

Azacitidine side effect

Side effects of JAKAFI

Any IL-6 inhibitor or IL6 receptor inhibitor situation and Liver total protein issue

Ugly disease

Side effects of PEG

Interesting view on Booster Vaccines from Dr.Gwen Nichols, chief Medical Officer L&L Society/Blood Cancer Patients

First Appointment re Stem Cell Transplant

Antibody testing in the NHS

LDH

Platelet about 1.2 million, covid vaccine?

Pregnant and having ET

Hydroxyurea hair loss

Interferon Rash

Who has had Covid?

Covid 19 antibody test

Querying Pegasus dose

Afib

Texas MPN Workshop 2021 | Promising trials in polycythemia vera

Texas MPN Workshop

Elevated Liver Enzymes (ALT and AST)?

ET - Pregnancy

Vaccine Booster

Thrombos up every summer!

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