Posts - MPN Voice | HealthUnlocked

MPN Voice

11,252 members•15,727 posts

All posts for December 2024

A Trial of Ropeg, high starting dose

There are trials of this sort going on, some members are in one. Not sure if this one has been posted. It's from China n = 44 for the full period of 2...

There are trials of this sort going on, some members are in one. Not sure if th...

EPguy

•3 months ago

20 Replies

HAPPY NEW YEAR!

wishing you love, peace, patience, kindness, the ability to give and receive empathy and understanding! Love to everyone! Anag

wishing you love, peace, patience, kindness, the ability to give and receive em...

Anag

•3 months ago

10 Replies

PV - B12 to take or not to take?

Hi everyone, Wishing you all a happy New Year! I was advised by a senior member of the Consultant Team approx. 12 months ago that I should absolutely not...

Hi everyone, Wishing you all a happy New Year! I was advised by a senior memb...

Swim360

•3 months ago

19 Replies

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ET and anaemia

I have suffered from mild anaemia in the past and took iron tablets for it. Now despite taking iron tablets I am still anaemia. My haematologist has told me...

I have suffered from mild anaemia in the past and took iron tablets for it. Now ...

Debinuk

•3 months ago

32 Replies

Soluble vs enteric coated aspirin

Since Feb 2024 I have been taking low dose soluble, effervescent aspirin (Upsarin -C) instead of enteric coated type.As per my hematologist there is no...

Since Feb 2024 I have been taking low dose soluble, effervescent aspirin (Upsari...

BrightNorka

•3 months ago

9 Replies

Hydroxyurea and weight gain

Has anyone experienced disproportionate weight gain after taking hydroxyurea for essential thrombocythemia?

Has anyone experienced disproportionate weight gain after taking hydroxyurea for...

Maanganaari

•3 months ago

16 Replies

Besremi

due to the global shortage of Pegasus I have been moved temporarily onto besremi . The side effects of fatigue have hit me like a train . I had no fatigue in...

due to the global shortage of Pegasus I have been moved temporarily onto besrem...

Titatagg

•3 months ago

6 Replies

Momelotinib

Good day! My husband has post-polycythemic myelofibrosis. Since 2015 he has been taking ruxolitinib. Over the past year he has lost 20 kg, he has anemia and...

Good day! My husband has post-polycythemic myelofibrosis. Since 2015 he has been...

Marina1964

•3 months ago

12 Replies

almost cramps

I sometimes get feelings in my lower legs that almost feel like cramps but not quite. They start behind my knee. It occurs only in the evening when sitting on...

I sometimes get feelings in my lower legs that almost feel like cramps but not q...

Sprat19

•3 months ago

9 Replies

jak2 pos, PV - Foot problem

In the past week my feet are literally falling apart . One previously swollen toe is shedding skin and the nail has turned purple. The skin on the rest of the...

In the past week my feet are literally falling apart . One previously swollen to...

Janbu

•3 months ago

4 Replies

indigestion

Hi all hope you had a nice Christmas and wishing you all a happy new year. I’m hoping for some advice and tips regarding indigestion. I started on aspirin in...

Hi all hope you had a nice Christmas and wishing you all a happy new year. I’m h...

TB66

•3 months ago

21 Replies

Starting Hydroxycarbamide

Hi All.I will be starting Hydroxycarbamide on 31st Dec taking 500mg everyday. I only have one concern. When I was taking interferon to control my blood levels...

Hi All.I will be starting Hydroxycarbamide on 31st Dec taking 500mg everyday. I ...

Adw265

•3 months ago

29 Replies

Brain Fog

I am now 59 and been taking Hydroxycarbamide for some time! 3 x 500mg capsules a day! My short term memory & brain fog hasn’t cleared?! Is it the meds or me...

I am now 59 and been taking Hydroxycarbamide for some time! 3 x 500mg capsules ...

Pappafraser

•3 months ago

5 Replies

Alcohol and Pegasys

Can I have an occasional glass of wine while taking pegasys?

larka13

•3 months ago

8 Replies

Efficacy of Besremi and other IFNs?

Hi all, good morning and wish you all a wonderful holiday. I had a conversation with a friend about the difference in efficacy between old and new...

Hi all, good morning and wish you all a wonderful holiday. I had a conversat...

SamHathaway1800

•3 months ago

30 Replies

HAPPY FESTIVE SEASON ALL MY MPN BROTHERS & SISTERS... WHEREVER YOU ARE...

HAPPY FESTIVE SEASON ALL MY MPN BROTHERS & SISTERS... WHEREVER YOU ARE... May it be the best New Year ever! 8-) Steve(Sydney)

HAPPY FESTIVE SEASON ALL MY MPN BROTHERS & SISTERS... WHEREVER YOU ARE... May i...

socrates_8

•3 months ago

15 Replies

BP results

I've been recording my blood pressure twice daily. Since May. It never seems to be constant. I have results showing high BP and low BP on a daily basis. It...

I've been recording my blood pressure twice daily. Since May. It never seems to ...

ArchieCatPurr

•3 months ago

3 Replies

Merry Christmas to All

Wishing everyone a Peaceful and Joyful Holiday Season and Best Wishes for the New Year.

Wishing everyone a Peaceful and Joyful Holiday Season and Best Wishes for the Ne...

hunter5582

•3 months ago

49 Replies

For the new year , whatever it holds

I will riseAfter every fall. I will rise And stand tall. I will rise Over the wall. I will rise Above them all. Like the sun, Which never dies. Though sets...

I will riseAfter every fall. I will rise And stand tall. I will rise Over the w...

Mostew

•3 months ago

10 Replies

hi everyone

it's been a while since ive been on ! This is due to me being not so good but i just wanted to say to all the mpn patients. I WISH YOU ALL A VERY MERRY AND...

it's been a while since ive been on ! This is due to me being not so good but i ...

Boobles

•3 months ago

8 Replies

Some Rux history and surprise on Jak1 targeting

With my now intense interest in the FDA approval process for untreatable conditions I was curious on that for Rux. It had an extraordinary fast approval....

With my now intense interest in the FDA approval process for untreatable conditi...

EPguy

•3 months ago

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What is the percent of PV patients who progress to myelofibrosis and is interferon the only treatment available to lower the risks?

I am taking hydroxyurea for my pv. From what I have read since I joined the group, there doesn't seem to be a way of confirming early the onset of...

I am taking hydroxyurea for my pv. From what I have read since I joined the gro...

Eferret

•3 months ago

7 Replies

MPN Polycythaemia Vera / ET - headaches?

Hi, I was diagnosed out of the blue following a routine full blood count back in 2019 with MPN ET, which has since been amended to PV with ET. A complete...

Hi, I was diagnosed out of the blue following a routine full blood count back in...

CooperS1

•3 months ago

3 Replies

Yet another thing…

I’ve had a “spot/growth” on my arm for a few weeks, it seemed to come up very quickly but didn’t go away. I called the GP and was directed to the nurse...

I’ve had a “spot/growth” on my arm for a few weeks, it seemed to come up very qu...

lizzziep

•3 months ago

31 Replies

MPN Tracker

Morning all.I've been asked by my haematologist to access the MPN Tracker in order to fill in my symptoms, once a week. However... I'm unable to access the...

Morning all.I've been asked by my haematologist to access the MPN Tracker in ord...

mystic_shrimp

•3 months ago

2 Replies

MPN specialist

Please can someone recommend an MPN specialist in the Manchester area. As I'm currently not happy with my hematology team. Thank you so much.

Please can someone recommend an MPN specialist in the Manchester area. As I'm cu...

Catbells66

•3 months ago

6 Replies

Cataracts/ET

Hi, does anyone know if having ET +JAK2 can contribute to getting cataracts? Had sight test at weekend & was informed sight has changed a lot & that I now...

Hi, does anyone know if having ET +JAK2 can contribute to getting cataracts? H...

micky10

•3 months ago

2 Replies

Happy Christmas

Wishing everyone involved with the forum a Merry Christmas and a Happy and Healthy New Year! (Thought the picture might make some of you smile, the hat didn’t...

Wishing everyone involved with the forum a Merry Christmas and a Happy and Healt...

lizzziep

•3 months ago

8 Replies

PV progress. Update

Hi All Last time I inquired about where to get the Pegasus in Australia. Through this forum I came to where I can order and get it here. The company delivered...

Hi All Last time I inquired about where to get the Pegasus in Australia. Throug...

Stoosh

•3 months ago

6 Replies

Seasons Greetings

Wishing all MPN staff, medics, volunteers and fellow patients a Merry Christmas and a Happy New Year. Thank you for all that you do to on my behalf. Really...

Wishing all MPN staff, medics, volunteers and fellow patients a Merry Christmas ...

artydutch

•3 months ago

Be the first to reply

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for December 2024

A Trial of Ropeg, high starting dose

HAPPY NEW YEAR!

PV - B12 to take or not to take?

ET and anaemia

Soluble vs enteric coated aspirin

Hydroxyurea and weight gain

Besremi

Momelotinib

almost cramps

jak2 pos, PV - Foot problem

indigestion

Starting Hydroxycarbamide

Brain Fog

Alcohol and Pegasys

Efficacy of Besremi and other IFNs?

HAPPY FESTIVE SEASON ALL MY MPN BROTHERS & SISTERS... WHEREVER YOU ARE...

BP results

Merry Christmas to All

For the new year , whatever it holds

hi everyone

Some Rux history and surprise on Jak1 targeting

What is the percent of PV patients who progress to myelofibrosis and is interferon the only treatment available to lower the risks?

MPN Polycythaemia Vera / ET - headaches?

Yet another thing…

MPN Tracker

MPN specialist

Cataracts/ET

Happy Christmas

PV progress. Update

Seasons Greetings

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