Posts - MPN Voice | HealthUnlocked

MPN Voice

10,784 members • 14,980 posts

All posts for January 2024

Half Marathon - MPN ET fundraising ♥️

Hi All, I’m Alice and I’m currently 21 years old. I got diagnosed with MPN ET in 2019. It’s taken a while for me to come to terms with it and live with it....

Hi All, I’m Alice and I’m currently 21 years old. I got diagnosed with MPN ET i...

Alicejj

•8 months ago

8 Replies

Unsure of treatment

My first post. I was told that I had an MPN 6-7 years ago and that I had too many platelets. My haematologist has never given me any details about my disorder...

My first post. I was told that I had an MPN 6-7 years ago and that I had too man...

Debinuk

•8 months ago

33 Replies

Can anyone tell me if they have ever had a problem with Hydroxyurea and leg ulcers

I am reaching out to you wonderful people once more. I have had ET Jak 2 for 3 years. Last May, I received a scratch on my leg I didnt think anything of it,...

I am reaching out to you wonderful people once more. I have had ET Jak 2 for 3...

kitttycat

•8 months ago

12 Replies

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Finally failed at side-stepping the “rona”

Well I guess sooner or later it had to happen. Four years of avoiding covid and now I caught it whilst traveling for work in the Far East. Started with a...

Well I guess sooner or later it had to happen. Four years of avoiding covid a...

Aldebaran25

•8 months ago

15 Replies

Meeting at Maggies at Marsden Sutton: 10.00am Monday 22nd

Hi Hope to meet Loraine, and anyone else who can make it, at the Maggies in Sutton Marsden. Its near the Cotswold Rd entrance. Signage not the best. I’ll be...

Hi Hope to meet Loraine, and anyone else who can make it, at the Maggies in Sut...

Rachelthepotter

•8 months ago

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MPN and secondary cancer

Hi Everyone, Diagnosed ET Nov 2023, currently taking daily aspirin and Hydroxy 500mg. I also have Hashimoto’s. Recently discovered lump in my breast, now...

Hi Everyone, Diagnosed ET Nov 2023, currently taking daily aspirin and Hydroxy ...

Vladimir1

•8 months ago

9 Replies

Pegasys and Sun

Hello, while on Pegasys do we still have to avoid or minimise sun exposure like on Hydrea? Or that's okay to hike in sunny days ?Just wondering as I live in...

Hello, while on Pegasys do we still have to avoid or minimise sun exposure like ...

kamiilos

•8 months ago

8 Replies

ET, platelets and stroke risk

Hello all from another new member. I was diagnosed with ET three months ago and as I am high-risk (over 60, JAK-2 positive, another mutation and a couple of...

Hello all from another new member. I was diagnosed with ET three months ago and...

Ginevra

•9 months ago

13 Replies

IFN or Rux?

Hello, I am looking for some advise regarding a change from Hydroxy to IFN or Rux. My WCC continues to rise and fluctuates between around 28-42. I have...

Hello, I am looking for some advise regarding a change from Hydroxy to IFN or Ru...

MWxxxx

•9 months ago

25 Replies

Tinnitus

I was diagnosed PV with positive Jak2 in November, 2022. Hydroxy and low dose aspirin has seemed to work for me. Good blood tests, only mild fatigue. But...

I was diagnosed PV with positive Jak2 in November, 2022. Hydroxy and low dose a...

Yanks7

•9 months ago

7 Replies

UPDATE: Would You Like to Have a Patient Led MPN Support Group in Devon and Cornwall?

UPDATE: Thank you everyone for your replies. At the moment our meetings are about organising the patient led support group as opposed to being actual support...

UPDATE: Thank you everyone for your replies. At the moment our meetings are ab...

Echocat

•9 months ago

23 Replies

update on my eyelid problem

Hello, all. I don’t know how many of you saw my previous post a few weeks ago when an ophthalmologist suspected basal cell carcinoma in my eyelid. I had a...

Hello, all. I don’t know how many of you saw my previous post a few weeks ago ...

Cja1956

•9 months ago

17 Replies

My Last (IFN) Dose, my Fateful Decision One Year Ago

This is a long and not cheerful post, I understand if you don’t wish to wade fully or at all thru it. Sections are marked for easy reference. The thoughts...

This is a long and not cheerful post, I understand if you don’t wish to wade ful...

EPguy

•9 months ago

76 Replies

Full list of autoimmune tests I got

This has come up in various threads, so I figure it's worth posting. I got all these in search of severe then-unspecific neuro/immune troubles. There are...

This has come up in various threads, so I figure it's worth posting. I got all ...

EPguy

•9 months ago

4 Replies

Devon to Dorset

I live in Devon at the moment and have a lovely caring Haematologist, but if things go as planned we'll be moving to Dorset shortly. How do I find/register...

I live in Devon at the moment and have a lovely caring Haematologist, but if thi...

Izzys-Mum

•9 months ago

10 Replies

chels1

been on hydra for over 2 years no probs but developed small lump on side of nose had it removed this week now have to wait 6 weeks approx for results. My hemo...

been on hydra for over 2 years no probs but developed small lump on side of nose...

Chel1

•9 months ago

13 Replies

Circulation

I have ET jak2-ve. I'm 53 and on aspirin with my platelets usually around 1300. The last 6/12 my circulation in my toes and fingers has been getting worse. My...

I have ET jak2-ve. I'm 53 and on aspirin with my platelets usually around 1300....

lynnieb

•9 months ago

10 Replies

Anyone have ankle and leg swelling on Hydroxyurea?

I've started having ankle and lower leg swelling, and some numbness in my lower legs. I have ET, and am JAK2 positive. I've been on Hydroxyurea since 2018. I...

I've started having ankle and lower leg swelling, and some numbness in my lower ...

dogsandhorses

•9 months ago

5 Replies

Is it ok to alter Pegasys dosage interval if going on holiday?

I have an appointment at Guy’s in three weeks time to discuss changing from hydroxycarbemide to Pegasys. I have a few one week holidays booked for this Spring...

I have an appointment at Guy’s in three weeks time to discuss changing from hydr...

Na56

•9 months ago

21 Replies

Peginterferon and nightmares

Just wondering if anyone has experienced nightmares whilst take peginterferon alpha 2a. I have noticed some sleep disturbance and last week, my 8th injection,...

Just wondering if anyone has experienced nightmares whilst take peginterferon al...

Lyndjs

•9 months ago

24 Replies

Link to article

This looks interesting-...

Phantasia

•9 months ago

2 Replies

increase of platelets

got my blood results back and my platelets are constantly increasing each time. I’m on aspirin daily. Anyone know what other action I can take to try reducing...

got my blood results back and my platelets are constantly increasing each time. ...

Chihuahua1505

•9 months ago

3 Replies

Total Hip Replacement Decision

Hello Friends, I have ET-MPL 515L, and this is year 10 with the disease, and I am doing well thanks to Pegasys. I have been informed, due to arthritis, I need...

Hello Friends, I have ET-MPL 515L, and this is year 10 with the disease, and I ...

Indigo42916

•9 months ago

13 Replies

What time to take hydroxycarbamide

Yesterday there was a post about what time to take hydroxycarbamide. I have ET jak2 positive and I have been taking 500 mg hydroxy daily for two-and-a-half...

Yesterday there was a post about what time to take hydroxycarbamide. I have ET ...

Jelbea

•9 months ago

11 Replies

Polycythemia

Hi everyone, I was diagnosed with PV last November after having a TIA the previous month. On Hydroxycarbamide daily and other tablets for high blood pressure....

Hi everyone, I was diagnosed with PV last November after having a TIA the previo...

Hidden

•9 months ago

13 Replies

ET and work!

Hi Just want some experiences from you regarding your work situation. I have ET. I work normal 8 hours office sedentary job. We had some reorganisations and I...

Hi Just want some experiences from you regarding your work situation. I have ET...

Myers75

•9 months ago

7 Replies

ET and fatigue

Hi, I am new to the site.My husband has recently been diagnosed with ET JAK2 positive. He has seen a haem but she doesn’t believe his extreme fatigue and...

Hi, I am new to the site.My husband has recently been diagnosed with ET JAK2 pos...

Ona54

•9 months ago

29 Replies

Enlarged spleen and new findings on trephine biopsy

Thanks to all who commented on the speed of spleen enlargement. It seems like there is a large variety of experiences and hard to pinpoint exactly what sort...

Thanks to all who commented on the speed of spleen enlargement. It seems like t...

artydutch

•9 months ago

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high platlets

hi I’m new here I’ve got severe health anxiety depression and I worry about things all the time for the last 2 years 3 months I’ve been fatigued and it’s...

hi I’m new here I’ve got severe health anxiety depression and I worry about thin...

Welshgirlxx

•9 months ago

25 Replies

Hydroxycarbamide

hello everyone I have ET JAK2 positive and take Hydroxycarbamide. I take this in the evening. My haematologist nurse has informed me this should be taken in...

hello everyone I have ET JAK2 positive and take Hydroxycarbamide. I take this ...

YBSx

•9 months ago

57 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2024

Half Marathon - MPN ET fundraising ♥️

Unsure of treatment

Can anyone tell me if they have ever had a problem with Hydroxyurea and leg ulcers

Finally failed at side-stepping the “rona”

Meeting at Maggies at Marsden Sutton: 10.00am Monday 22nd

MPN and secondary cancer

Pegasys and Sun

ET, platelets and stroke risk

IFN or Rux?

Tinnitus

UPDATE: Would You Like to Have a Patient Led MPN Support Group in Devon and Cornwall?

update on my eyelid problem

My Last (IFN) Dose, my Fateful Decision One Year Ago

Full list of autoimmune tests I got

Devon to Dorset

chels1

Circulation

Anyone have ankle and leg swelling on Hydroxyurea?

Is it ok to alter Pegasys dosage interval if going on holiday?

Peginterferon and nightmares

Link to article

increase of platelets

Total Hip Replacement Decision

What time to take hydroxycarbamide

Polycythemia

ET and work!

ET and fatigue

Enlarged spleen and new findings on trephine biopsy

high platlets

Hydroxycarbamide

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