Posts - MPN Voice | HealthUnlocked

MPN Voice

10,832 members•15,126 posts

All posts for August 2021

Change to Interferon

Hi my MPN family. Today I had my first weekly -Interferon injection after being on Hydroxy for 6 years for my PV. What, if anything, can I expect to feel or...

Hi my MPN family. Today I had my first weekly -Interferon injection after bein...

jillydabrat

•3 years ago

13 Replies

No medication !

Went to my appointment yesterday never got started on any medication for my ET MF, my bloods haven't changed much from last appointment so doc said there is...

Went to my appointment yesterday never got started on any medication for my ET M...

indy22

•3 years ago

3 Replies

ET hair loss

Im having so much hair loss … is this because of ET or because of my treatment pegasys ???

Im having so much hair loss … is this because of ET or because of my treatment p...

shiela23

•3 years ago

4 Replies

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Curly hair side effect?

I started taking hydroxyurea about 20 mo ago. Is it possible to have developed somewhat curly hair as a ‘side effect’? It’s wonderful! Ive never had curly hair...

I started taking hydroxyurea about 20 mo ago. Is it possible to have developed s...

Fi82

•3 years ago

17 Replies

Decrease in blood counts after vaccination.

Hi everyone. A few months ago I posted here to ask if anyone's blood counts had dropped after the Pfizer vaccination. Mine dropped dramatically and have still...

Hi everyone. A few months ago I posted here to ask if anyone's blood counts had ...

Anita53

•3 years ago

8 Replies

Midlands MPN Specialist

My husband and I are considering moving to the Midlands so we are closer to support from friends. I am nervous about leaving my local hospital haematology...

My husband and I are considering moving to the Midlands so we are closer to supp...

jillydabrat

•3 years ago

14 Replies

Anyone with ET/MPN based in Switzerland?

Hi everyone, I was recently offered a job in Switzerland and expect to move there this autumn. I don't know how the health system works there, and wondering if...

Hi everyone, I was recently offered a job in Switzerland and expect to move ther...

junebuggy

•3 years ago

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Hematoma after blood draw/muscle tear?!

Had sudden onset of a really painful lump and bruising in my forearm. Increased pain with movement. Went to ER to rule out DVT. Ultrasound showed good blood...

Had sudden onset of a really painful lump and bruising in my forearm. Increased ...

Lndcr4evr

•3 years ago

7 Replies

Hydroxyurea contribute to Osteoporosis?

Has anyone been told that taking hydroxyurea can contribute to osteoporosis

DH65

•3 years ago

2 Replies

Et treatment

Does anyone have ET without treatment only aspirin????

shiela23

•3 years ago

15 Replies

How to change my username

I would like to change my username. I saw a post where some else was able to do that. Thanks! Annette

I would like to change my username. I saw a post where some else was able to do ...

Oceanviewer2019

•3 years ago

1 Reply

Prescription size/duration

I was wondering if anyone else has seen this; starting this month, I've just noticed that my GP has reduced the amount/duration of prescribed tablets being...

I was wondering if anyone else has seen this; starting this month, I've just no...

KevinJH

•3 years ago

18 Replies

ET PROBLEM

My eyes are twitching is this related to ET or peg side effects?

shiela23

•3 years ago

4 Replies

Myelofibrosis worsened so going to start ruxolitinib

I've had my second consultant appointment since being diagnosed with post ET myelofibrosis about 1 month ago. Then I was intermediate level 1 with platelet...

I've had my second consultant appointment since being diagnosed with post ET mye...

Scaredy_cat

•3 years ago

17 Replies

Rusfertide Could Represent New Therapeutic Option in Polycythemia Vera

https://www.onclive.com/view/rusfertide-could-represent-new-therapeutic-option-in-polycythemia-vera What we are seeing is that not only can we use this drug...

https://www.onclive.com/view/rusfertide-could-represent-new-therapeutic-option-i...

Manouche

•3 years ago

1 Reply

symptoms

i had my second appointment with haematologist last thursday, after being diagnosed E.T 8 weeks ago, i was told to take aspirin once a day and hopefully it...

i had my second appointment with haematologist last thursday, after being diagno...

doglover49

•3 years ago

24 Replies

Little blood spots

Can anyone shed a light on those little “blood spots” on the inside of my arm. What can they be? Why do I keep getting those? They just appear overnight. I’m...

Can anyone shed a light on those little “blood spots” on the inside of my arm. W...

Cokopops

•3 years ago

4 Replies

Diarrhea with ET on hydroxyurea

Hi Everyone. Has anyone with ET on hydroxyurea had horrible diarrhea? I am having horrible diarrhea for two weeks now. My GP gave me a stool sample kit that I...

Hi Everyone. Has anyone with ET on hydroxyurea had horrible diarrhea? I am havin...

blueseas45

•3 years ago

6 Replies

Worried about my symptoms!!

Good afternoon everyone! Is the first time for me posting on here but I read all your post and sometimes re-read. I am an 34 years female, diagnosed with...

Good afternoon everyone! Is the first time for me posting on here but I read al...

Cinemon

•3 years ago

43 Replies

Is it essential to get a bone marrow biopsy?

I'm newly diagnosed with ET JAK2+, 600-700 platelet count, taking aspirin. Getting my head around it all. Is there an urgency to get biopsy or see how I am...

I'm newly diagnosed with ET JAK2+, 600-700 platelet count, taking aspirin. Getti...

Love2walk2

•3 years ago

25 Replies

Cancelled again

I have received an email that the article in the Sun has been bumped again. I give up.

I have received an email that the article in the Sun has been bumped again. I gi...

jillydabrat

•3 years ago

9 Replies

Pegasus, Hu and Iron

This is my first individual post. I am PV Jak 2+. I’ve just started Pegasus as HU had not yet stabilised my bloods (after two years of increasing treatment)...

This is my first individual post. I am PV Jak 2+. I’ve just started Pegasus as H...

lhammy66

•3 years ago

17 Replies

Brown like circle patches on my feet

Hi guys am just wondering if these brown circle like patches appeared on my feet last night got around 6 altogether could it be due to condition we got or is...

Hi guys am just wondering if these brown circle like patches appeared on my feet...

Jody00

•3 years ago

2 Replies

Should I wait ?

My haematologist receptionist phoned and said doctor wanted to change my appointment till after I had my scan to check my spleen ! My original appointment is...

My haematologist receptionist phoned and said doctor wanted to change my appoint...

indy22

•3 years ago

5 Replies

Low Serum Folate

After taking a B12 supplement for only one month, my B12 levels are now normal. Which is good. All other blood levels are also within 'normal' range. HCT...

After taking a B12 supplement for only one month, my B12 levels are now normal. ...

Kari1961

•3 years ago

6 Replies

Tremors Update

My tremors (post covid) continue. I take all the recommended supplements and have tried 3 different epilepsy meds. I just cannot tolerate them, they make me...

My tremors (post covid) continue. I take all the recommended supplements and hav...

blu3yedblonde

•3 years ago

28 Replies

haemoglobin

Hello do haemoglobin levels go down as well as up with PRV?

Brychni

•3 years ago

12 Replies

ET TREATMENT

Is okay to stop my peg treatment causing me a lot of problem in my body and head… since im showing good blood counts every month … can I stop my treatment????...

Is okay to stop my peg treatment causing me a lot of problem in my body and head...

shiela23

•3 years ago

2 Replies

Pegasus interferon injection

I have just done my 7th injection and so pleased to say it went well. I was originally having problems with the prepping but thanks to all the advice different...

I have just done my 7th injection and so pleased to say it went well. I was orig...

Hughley

•3 years ago

23 Replies

Thanks to the MPN Voice Community Had Empowering Appt with my MPN Specialist

I had posted this as a reply to another post, but given that I was so able to directly affect my treatment plan only thanks to all of you and the great...

I had posted this as a reply to another post, but given that I was so able to di...

Solyesh

•3 years ago

8 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2021

Change to Interferon

No medication !

ET hair loss

Curly hair side effect?

Decrease in blood counts after vaccination.

Midlands MPN Specialist

Anyone with ET/MPN based in Switzerland?

Hematoma after blood draw/muscle tear?!

Hydroxyurea contribute to Osteoporosis?

Et treatment

How to change my username

Prescription size/duration

ET PROBLEM

Myelofibrosis worsened so going to start ruxolitinib

Rusfertide Could Represent New Therapeutic Option in Polycythemia Vera

symptoms

Little blood spots

Diarrhea with ET on hydroxyurea

Worried about my symptoms!!

Is it essential to get a bone marrow biopsy?

Cancelled again

Pegasus, Hu and Iron

Brown like circle patches on my feet

Should I wait ?

Low Serum Folate

Tremors Update

haemoglobin

ET TREATMENT

Pegasus interferon injection

Thanks to the MPN Voice Community Had Empowering Appt with my MPN Specialist

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