Posts - MPN Voice | HealthUnlocked

MPN Voice

10,438 members • 14,388 posts

All posts for January 2024

Ear problems

I've read a few posts from people with mpns and ear problems. I suddenly developed some deafness in one of my ears a few months ago. The usual gp ideas based...

I've read a few posts from people with mpns and ear problems. I suddenly develo...

Scaredy_cat

•3 months ago

6 Replies

Itchy skin, scratchy eyes, heat and humidity…. 🤔

Good morning from Brisbane, Australia 👋🏻 I’ve got ET JAK2 pos and have started to get the itchies 😆 I have read that it’s common with PV but I wondered...

Good morning from Brisbane, Australia 👋🏻 I’ve got ET JAK2 pos and have starte...

Pachena

•3 months ago

3 Replies

One year stem cell transplant anniversary

This week a year ago I received my donor's stem cells. For those of you not following my posts, it was hard going in the early months but by late June things...

This week a year ago I received my donor's stem cells. For those of you not foll...

Scaredy_cat

•3 months ago

33 Replies

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Trimethoprim - ET

I have unfortunately developed a urinary tract infection. I am penicillin-sensitive and have been prescribed trimethoprim as a seven day course. I have been...

I have unfortunately developed a urinary tract infection. I am penicillin-sensi...

Jelbea

•3 months ago

10 Replies

Whooshing in right ear

Hi, just wondering if anyone has experienced a pulsing noise in ear. It started a couple of weeks ago. I have MF and take 90mg of Pegasys weekly. I have called...

Hi, just wondering if anyone has experienced a pulsing noise in ear. It started ...

Robeets_33

•3 months ago

30 Replies

Alternative to Domperidone tablets?

I've joined here because I'm interested to find out what tips others have on helping nausea/vomiting which I'd likely to be caused by the hydroxycarbamide even...

I've joined here because I'm interested to find out what tips others have on hel...

Eagles52

•3 months ago

10 Replies

Jakafi out of stock

Hi all fellows in MPN, I just met my doc and informed that Malaysia especially Kuala Lumpur hospitals out of stock for Jakafi and Pegasys. If you have a plan...

Hi all fellows in MPN, I just met my doc and informed that Malaysia especially K...

william-Indo

•3 months ago

2 Replies

Sleep

Diagnosed with PV,ET,Jak2 My only question is does anyone have sleep problems,I’m struggling to get too sleep. I take 2Hydroxycarbamide at approximately...

Diagnosed with PV,ET,Jak2 My only question is does anyone have sleep problems,I...

Magpie48

•3 months ago

9 Replies

JAK2 Allele Frequency/Burden

I am a 69-year-old female and was diagnosed with polycythemia vera in November 2023. I have been taking hydroxyurea since the middle of November it has...

I am a 69-year-old female and was diagnosed with polycythemia vera in November ...

FlannelPJs

•3 months ago

26 Replies

Pumpkin Seed Oil?

I’ve been recommended pumpkin seed oil for help with my overactive bladder, has anyone used it, and did it affect blood counts? Thank you in advance 😁

I’ve been recommended pumpkin seed oil for help with my overactive bladder, has ...

lizzziep

•3 months ago

2 Replies

turkey tail mushrooms

I’ve been told these mushrooms are very good for boosting immunity; has anyone heard or tried them?

I’ve been told these mushrooms are very good for boosting immunity; has anyone h...

waterloveryippee

•3 months ago

16 Replies

Frustrated, stressed and finally starting Ruxolinitib sometime soon.

The MDT meeting ( my first one) concluded that I need to start RUX and I qualify on the NHS, as MF intermediate 2. This has taken me nearly 9 months to achieve...

The MDT meeting ( my first one) concluded that I need to start RUX and I qualify...

artydutch

•3 months ago

6 Replies

Peg Interferon

Hello everyone.I check into this site every day because your input has helped me on my journey with Jak2 pos. I have been on hydroxycarmide 500mg daily for...

Hello everyone.I check into this site every day because your input has helped me...

Charliemills

•3 months ago

34 Replies

pre workout supplements

Hi, wonder if any of you use a pre workout supplements and if its safe to do for us ? I am not very experience at the science behind it, but some supplements...

Hi, wonder if any of you use a pre workout supplements and if its safe to do fo...

kamiilos

•3 months ago

3 Replies

Heliocare

I am going to post this and everyone can do with the information what they want. I wanted to bring this dietary supplement to everyone’s attention especially...

I am going to post this and everyone can do with the information what they want....

KLCTJC

•3 months ago

21 Replies

Peg update suprize

Hi to you all,Well you could have knocked me down with a feather platelets at 295!!! Been on Peg since Nov at 45 mg fortnightly so even the Heam was...

Hi to you all,Well you could have knocked me down with a feather platelets at 29...

Spanelmad

•3 months ago

32 Replies

Pegasys Update 1.0

Finally getting around to sharing my experiences of starting Pegasys. First a little background. Diagnosed with ET JAK2+ in 2019 after a decade of...

Finally getting around to sharing my experiences of starting Pegasys. First a li...

Crossefield

•3 months ago

16 Replies

Fatigue

Any tips on dealing with the constant Fatigue and brain fuzziness I'm getting.

ArchieCatPurr

•3 months ago

8 Replies

Familial Polycythemia

Hi,I wondered if anyone could advise on what care we should be getting for familial polycythemia? my 2 children (age 24 & 27) and I were tested at Guys a few...

Hi,I wondered if anyone could advise on what care we should be getting for famil...

Vicky_b

•3 months ago

4 Replies

Covid and Myelofibrosis

hi I’ve just tested positive for Covid, I have post pv Myelofibrosis. I’m waiting on 111 to see whether I need to have some treatment. What are your thoughts...

hi I’ve just tested positive for Covid, I have post pv Myelofibrosis. I’m wait...

Mal42

•3 months ago

5 Replies

Global MPN Scientific Foundation – MPN Educational Roundtables webinars 24 – 26 January 2024

The GMPNSF https://www.gmpnsf.org/ are holding a series of MPN educational roundtable webinars uniting MPN experts, MPN associations and patients from 6...

The GMPNSF https://www.gmpnsf.org/ are holding a series of MPN educational round...

Mazcd

Partner•3 months ago

4 Replies

side effects of hydroxycarbamide

I am soon to start this drug, does it impact on physical activity; I do a lot of cycling and swimming at the moment. Also, has anyone experienced problems...

I am soon to start this drug, does it impact on physical activity; I do a lot of...

waterloveryippee

•3 months ago

39 Replies

Update 7.9 = Good News

I just saw both the Neurologist/Neurofibromatosis specialist and MPN specialist yesterday. The news was good on both fronts. Neurology Update. At 4.5...

I just saw both the Neurologist/Neurofibromatosis specialist and MPN specialist ...

hunter5582

•3 months ago

60 Replies

calr mutation new information

https://www.nature.com/articles/s41408-024-00991-2?fbclid=IwAR1tcWk4RDnJMryk77_4T2TWyHhBt87Up87JOqT3KfQEHm_Lr_jtrBtDyJk can someone break this down for me ?...

https://www.nature.com/articles/s41408-024-00991-2?fbclid=IwAR1tcWk4RDnJMryk77_4...

Green1988

•3 months ago

7 Replies

Myeloproliferative or Myelodysplastic: Which Term Is Correct?

From our friends at My MPN Team, a very nice brief explanation of MPN - MDS terminology....

From our friends at My MPN Team, a very nice brief explanation of MPN - MDS term...

hunter5582

•3 months ago

4 Replies

Besremi side effects?

Hello community, After getting the prescription for Besremi, my husband is now tentative about starting the medication as he has be told by both the...

Hello community, After getting the prescription for Besremi, my husband is now ...

Laluna5683

•3 months ago

17 Replies

Platelets

Hi, me again.Jak2 positive ET. On aspirin since 2018, and HU since 2019. Platelets this week are down to 366 and HCT risen to 0.503 Last review three months...

Hi, me again.Jak2 positive ET. On aspirin since 2018, and HU since 2019. Platel...

Mcrg

•3 months ago

2 Replies

Aspirin and ET

Hi. I have E T and I’ve been on hydroxy and aspirin for 4 years. Saw the haematologist last week. She said that my spleen was a little enlarged but nothing to...

Hi. I have E T and I’ve been on hydroxy and aspirin for 4 years. Saw the haemat...

Cokopops

•3 months ago

8 Replies

Worries about side effects of hydroxycarbamide - hair loss in particular

I was diagnosed with ET last July aged 66. I also have type 1 diabetes though this is well controlled. My consultant recommended I start taking...

I was diagnosed with ET last July aged 66. I also have type 1 diabetes though th...

gardner99

•3 months ago

17 Replies

log in

I’ve been a member of this group for at least ten years and suddenly I’m being asked to log in with password every time which is every day. Does anyone else...

I’ve been a member of this group for at least ten years and suddenly I’m being a...

Little-friend-Susan

•3 months ago

4 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2024

Ear problems

Itchy skin, scratchy eyes, heat and humidity…. 🤔

One year stem cell transplant anniversary

Trimethoprim - ET

Whooshing in right ear

Alternative to Domperidone tablets?

Jakafi out of stock

Sleep

JAK2 Allele Frequency/Burden

Pumpkin Seed Oil?

turkey tail mushrooms

Frustrated, stressed and finally starting Ruxolinitib sometime soon.

Peg Interferon

pre workout supplements

Heliocare

Peg update suprize

Pegasys Update 1.0

Fatigue

Familial Polycythemia

Covid and Myelofibrosis

Global MPN Scientific Foundation – MPN Educational Roundtables webinars 24 – 26 January 2024

side effects of hydroxycarbamide

Update 7.9 = Good News

calr mutation new information

Myeloproliferative or Myelodysplastic: Which Term Is Correct?

Besremi side effects?

Platelets

Aspirin and ET

Worries about side effects of hydroxycarbamide - hair loss in particular

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