Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,843 posts

All posts for October 2021

Decision made

I haven't been on here for about three weeks as my husband and I took a much needed holiday on the Isle of Mull. The day before we set off I had an appointment...

I haven't been on here for about three weeks as my husband and I took a much nee...

Otterfield

•3 years ago

38 Replies

Positive for Covid

Good evening, I have tested positive for Covid and I have ET Jack2. I am only on aspirin 75 mg and my last count of platelets were 430. My symptoms are very...

Good evening, I have tested positive for Covid and I have ET Jack2. I am only ...

Cinemon

•3 years ago

5 Replies

Pain-top of foot

Could pain on top of my foot be due to hydroxy? Feels like someone hammering nails in my foot! Get tingling feeling and then sharp pain.. can hardly walk Has...

Could pain on top of my foot be due to hydroxy? Feels like someone hammering nai...

Cokopops

•3 years ago

22 Replies

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Dosage of hydroxyurea

I should add a side bar to my previous post...after only being on 500mgs of hydroxyurea for a few weeks. I did experience some hair loss! 😳 It still seems...

I should add a side bar to my previous post...after only being on 500mgs of hyd...

K-itty

•3 years ago

6 Replies

What Platelet count is your doctor recommending?

I have been recently diagnosed with Jak 2 ET. At the time of diagnosis my platelets were 575. Was put on hydroxyurea 500 mg once a day but has been increased...

I have been recently diagnosed with Jak 2 ET. At the time of diagnosis my platel...

FloydWood

•3 years ago

21 Replies

Potassium levels?

Has anyone had problems with their Potassium Levels? I had a high level on one of my routine blood tests and it was followed up by another test - due to COVID...

Has anyone had problems with their Potassium Levels? I had a high level on one o...

Plavers

•3 years ago

23 Replies

Appointments

Hi I've eventually had a scan on my stomach few days ago has been in pain and bloating bit said doesn't look like there too much to worry about my results...

Hi I've eventually had a scan on my stomach few days ago has been in pain and b...

Jody00

•3 years ago

4 Replies

Kidney disease and ET, HU

Since being diagnosed with ET JAK2 in January '21 I have noticed that my blood tests are showing level 2 kidney disease. From what I have read and from what...

Since being diagnosed with ET JAK2 in January '21 I have noticed that my blood t...

nightshadow

•3 years ago

15 Replies

Announcing a new monthly blog dedicated to young people living with MPNs

Are you a young MPN patient? Alice, a 26 year old with ET, is now writing a monthly blog dedicated to young people and MPNs, she will be writing about...

Are you a young MPN patient? Alice, a 26 year old with ET, is now writing a mont...

Mazcd

Partner•3 years ago

21 Replies

Can't get 3rd primary jab? Contact CCG

If like me you know you fall into the immunosuppressed group and are entitled to a 3rd primary dose of covid vaccine yet have been unsuccessful in obtaining...

If like me you know you fall into the immunosuppressed group and are entitled to...

MCW22

•3 years ago

23 Replies

Besremi (ropeginterferon) authorized for polycythemia vera treatment in Korea

https://www.koreabiomed.com/news/articleView.html?idxno=12349

HFrank

•3 years ago

9 Replies

Anagralide

Hi. Hope everyone is well. So went to see my haemotoligist today for results. Not progressed to myelofibrosis but do have scarring on bone marrow. After years...

Hi. Hope everyone is well. So went to see my haemotoligist today for results. No...

JeniMac

•3 years ago

24 Replies

Given up asking, nobody gives a fig

Fig is a substitute word. After trying to get my darling wife who has MF and is without a spleen, along with a portal vein thrombosis a third covid vaccination...

Fig is a substitute word. After trying to get my darling wife who has MF and is ...

jointpain

•3 years ago

24 Replies

Third Jab Conundrum

Just thought I ‘d tell people on here my experience as I find it inexplicably. Luckily I managed to obtain my third Covid jab last week, (thanks to MPN Voice...

Just thought I ‘d tell people on here my experience as I find it inexplicably. ...

swimswam

•3 years ago

6 Replies

Normal life expectancy with PV

Overall Survival with PV clinically tested. https://mpnforum.com/pv-os/

Manouche

•3 years ago

21 Replies

Oops, venesection required!

My own fault. I asked to be put onto iron tablets as my levels were so low and I was fatigued. I had a phone call from Haematology yesterday informing me I...

My own fault. I asked to be put onto iron tablets as my levels were so low and ...

Aime

•3 years ago

23 Replies

Stubborn platelets

I have been taking 45 mps interferon for Et for 3 months and my platelet count has started to rise haemo wants to increase this to 90 not too happy as I am...

I have been taking 45 mps interferon for Et for 3 months and my platelet count h...

ciye

•3 years ago

31 Replies

Getting copy of blood tests

I usually ring haematology nurse at hospital for results but they havnt answered the phone. So I rang consultants secretary who was very helpful and is sending...

I usually ring haematology nurse at hospital for results but they havnt answered...

Mostew

•3 years ago

3 Replies

Hurrah

Hi my fellow MPNs My husband got through this Morning to the GP Alliance, where he has booked his third covid Jab, told her about me not getting an invite...

Hi my fellow MPNs My husband got through this Morning to the GP Alliance, where...

Superwoman

•3 years ago

3 Replies

Dental problems

I have always taken good care of my teeth and, until I was put on Hydroxy, had no dental problems at all. After 6 years of Hydroxy my gums have receded, my...

I have always taken good care of my teeth and, until I was put on Hydroxy, had n...

jillydabrat

•3 years ago

17 Replies

3rd Covid Jab

Hi Peeps, Just got an e.mail from Blood Cancer UK to ask if I had been invited for my third Covid Jab by 5pm today, if not would I fill out a survey which I...

Hi Peeps, Just got an e.mail from Blood Cancer UK to ask if I had been invited f...

Superwoman

•3 years ago

17 Replies

3rd dose or is it a booster?

When I had my flu jab last week I enquired about the 3rd dose/booster though the receptionist wasn’t aware of any differences, however a lady in front of me...

When I had my flu jab last week I enquired about the 3rd dose/booster though the...

Jonnymitts

•3 years ago

7 Replies

Dental implant question

Hello, Have you had a dental implant since being dx with MF, and if so which material is your implant made from? I’m trying to decide whether to have...

Hello, Have you had a dental implant since being dx with MF, and if so which ma...

LucyGeering

•3 years ago

3 Replies

Moderna and third vaccine

I had the third vaccine at a mass vaccination centre outside Edinburgh yesterday evening. The admin lady who checked my appointment said it was going to be...

I had the third vaccine at a mass vaccination centre outside Edinburgh yesterda...

DJK12

•3 years ago

13 Replies

Ear pressure and popping with ET

Has anyone had trouble with ear pressure and constant popping after starting aspirin or possibly as a symptom. Mine has lasted 6 months now. Non stop.

Has anyone had trouble with ear pressure and constant popping after starting asp...

Cjmurray4

•3 years ago

10 Replies

mouth ulcers

Just a big thank you to everyone who answered re Mouth Ulcers. I have made a note of all remedies/suggestions which I will pass on to her. She may have tried...

Just a big thank you to everyone who answered re Mouth Ulcers. I have made a no...

Oscarsboy

•3 years ago

2 Replies

Flu jab

I got my flu jab last Monday which made me feel pretty unwell until Wednesday plus a sore arm. I know we are all individuals so everyone’s reaction may be...

I got my flu jab last Monday which made me feel pretty unwell until Wednesday pl...

Aime

•3 years ago

22 Replies

Flu

Anyone had the flu shot on hydroxycarbamide not sure if to have it

ChillyAsh34

•3 years ago

17 Replies

Pegasus on ET JAK+ Oct. 08 2021 update

Started on Pegasus 90umg/wk for 2 months, plate drops from 500-600 to 300. Used to take HU 500mg/day and dropped platelets from 900+ to 500ish. Switch from HU...

Started on Pegasus 90umg/wk for 2 months, plate drops from 500-600 to 300. Used ...

Sam2022

•3 years ago

6 Replies

Monoclonal antibody infusion

I’d Covid 19 positive I discovery from this morning my primary dr recommend take a monoclonal antibody I have ESSENCIAL trombositosis my platelets are...

I’d Covid 19 positive I discovery from this morning my primary dr recommend ta...

Tcperez

•3 years ago

1 Reply

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2021

Decision made

Positive for Covid

Pain-top of foot

Dosage of hydroxyurea

What Platelet count is your doctor recommending?

Potassium levels?

Appointments

Kidney disease and ET, HU

Announcing a new monthly blog dedicated to young people living with MPNs

Can't get 3rd primary jab? Contact CCG

Besremi (ropeginterferon) authorized for polycythemia vera treatment in Korea

Anagralide

Given up asking, nobody gives a fig

Third Jab Conundrum

Normal life expectancy with PV

Oops, venesection required!

Stubborn platelets

Getting copy of blood tests

Hurrah

Dental problems

3rd Covid Jab

3rd dose or is it a booster?

Dental implant question

Moderna and third vaccine

Ear pressure and popping with ET

mouth ulcers

Flu jab

Flu

Pegasus on ET JAK+ Oct. 08 2021 update

Monoclonal antibody infusion

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