Posts - MPN Voice | HealthUnlocked

MPN Voice

10,428 members • 14,368 posts

All posts for February 2018

small rise in platelets ?

Hi all, after being on HU daily for 18 mth my blood results today are 390 ,before Christmas it was 371 always gone down , there keeping on same dose and next...

Hi all, after being on HU daily for 18 mth my blood results today are 390 ,befor...

catwoman2015

•6 years ago

12 Replies

cramps

HI I was getting them in my hands worse trying to take a plug out a socket I could not straightening my fingers I have et jak2 + my consultant sent me for ecg...

HI I was getting them in my hands worse trying to take a plug out a socket I cou...

Scottishterrier

•6 years ago

4 Replies

Rash/spots

Good morning everyone . I was wondering if anyone else gets tiny red dots on the lower half of their legs that looks like a rash . I have very dry skin and get...

Good morning everyone . I was wondering if anyone else gets tiny red dots on the...

Pippa63

•6 years ago

10 Replies

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Possible cure for calf cramps

I have been getting calf and shin cramps to varying degrees every night last few months. I can alleviate with pre bed stretching but always at least a twinge....

I have been getting calf and shin cramps to varying degrees every night last few...

Paul123456

•6 years ago

3 Replies

Long haul flights

Had anyone had any experience of flying to Australia from the U.K. with a PV diagnosis. Any precautions apart from the usually flight socks and getting up and...

Had anyone had any experience of flying to Australia from the U.K. with a PV dia...

Jasbak22

•6 years ago

11 Replies

Blood Clots

Hi I stubbed my toes last week as I got out of bed in the dark and forgot my suitcase was on the floor as I was flying off to Malta the next morning. It was...

Hi I stubbed my toes last week as I got out of bed in the dark and forgot my sui...

Mallard

•6 years ago

23 Replies

Medicine

Been on hydroxy for 6 weeks. Having dizzy spells. Am wondering if meds r worse then the disease ET. my numbers r coming down and I really dont know how much...

Been on hydroxy for 6 weeks. Having dizzy spells. Am wondering if meds r worse t...

Petsch

•6 years ago

3 Replies

Platelets!

Hello everybody! I went to see my haemo today and my platelets have fallen to 600 ish from 1200 six weeks ago. I was wondering, if when they get within a...

Hello everybody! I went to see my haemo today and my platelets have fallen to 60...

Juliet46

•6 years ago

4 Replies

Curcumin

A number of you have mentioned taking curcumin/turmeric for arthritis. I have tried to find the relevant posts but haven't been successful, so please, for...

A number of you have mentioned taking curcumin/turmeric for arthritis. I have t...

Garden987

•6 years ago

6 Replies

First time on Hydroxyurea

Hi all. Can’t sleep tonight and thought of sharing my fears. I am terrified as everybody who starts medication. I am 67 years old and active. 15 years now was...

Hi all. Can’t sleep tonight and thought of sharing my fears. I am terrified as e...

Kelly2

•6 years ago

43 Replies

Metformin could be beneficial, esp combined with Ruxo

https://www.nature.com/articles/s41419-017-0256-4 Very interesting, scroll down to impact on JAK2 mutation Early days but exciting because Metformin easily...

https://www.nature.com/articles/s41419-017-0256-4 Very interesting, scroll down ...

Paul123456

•6 years ago

12 Replies

Moving home

Hi Maz, I am moving home on 16 March to live in Bathgate, West Lothian, Scotland and will need to find new health care. I wondered if there was anyone in...

Hi Maz, I am moving home on 16 March to live in Bathgate, West Lothian, Scotland...

Mujer

•6 years ago

5 Replies

Hydroxy

Do you need to take hydroxy same time daily or does it matter

Petsch

•6 years ago

13 Replies

ET fatigue 😪😪

Hello, im 8mths diagnosed with ET. I’m 46, overweight 😱🙈🙈 and only on aspirin n vitamin supplements. At 1st the fatugue wasnt too bad, but the last few...

Hello, im 8mths diagnosed with ET. I’m 46, overweight 😱🙈🙈 and only on aspiri...

ladydriva

•6 years ago

12 Replies

fundraising

I've been swimming for MPN voice charity and Maggies. I'm nearly at my 50 miles. Its been a long year. Give me a big cheer....

I've been swimming for MPN voice charity and Maggies. I'm nearly at my 50 miles....

EleanorPV

•6 years ago

8 Replies

Bone pain

Hi does anyone who experience bone pain get pain in the pelvic bone area. I have only recently started with this and almost always the pain is in my arms....

Hi does anyone who experience bone pain get pain in the pelvic bone area. I have...

Skye333

•6 years ago

10 Replies

Coq10

I’m on a statin and hydroxyurea I am wondering if there r any problems with taking coq10 when on hydroxy

I’m on a statin and hydroxyurea I am wondering if there r any problems with taki...

Petsch

•6 years ago

3 Replies

Time of day to take hydroxy

Still trying to figure out best time of day to take meds. I’m on 2 at this time wondering if anyone takes before bed and if so aren’t you supposed to drink...

Still trying to figure out best time of day to take meds. I’m on 2 at this time ...

Petsch

•6 years ago

11 Replies

ET

Just diagnosed with ET. put on hydroxyrea. Looking for support and info on treatments.

Just diagnosed with ET. put on hydroxyrea. Looking for support and info on treat...

Sweetones

•6 years ago

15 Replies

Haemophilia

Hi I have Polycythaemia so am on here from time to time Just been told my two year old grandson has haemophilia! Tried to find a community on here but can’t...

Hi I have Polycythaemia so am on here from time to time Just been told my two y...

James53

•6 years ago

2 Replies

Ruxolitinib and high platelets

I have PV and been taking Hydroxycarbamide for a year and had many side effects and my blood counts are not being controlled. I came off Hydroxy 3 weeks ago...

I have PV and been taking Hydroxycarbamide for a year and had many side effects ...

RosemaryHarper

•6 years ago

6 Replies

Apparent polycythemia and B12

Hi I wonder if anyone can advise me about my husband He has what is called apparent polycythemia has had venesection sin the past but is just being monitored...

Hi I wonder if anyone can advise me about my husband He has what is called appa...

Gcart

•6 years ago

5 Replies

Et

Does anyone have tingling in arms and legs Diagnosed in January with ET Put on hydra and hydroxy. Don’t know if it’s the aspirin hydroxy or condition but never...

Does anyone have tingling in arms and legs Diagnosed in January with ET Put on h...

Petsch

•6 years ago

10 Replies

itching

to Nanny bar I have et jak2+ I too have an itching problem it is so bad my skin is so thin that I actually broke the skin so my consultant at the hospital I...

to Nanny bar I have et jak2+ I too have an itching problem it is so bad my skin ...

Scottishterrier

•6 years ago

1 Reply

Lemsips etc

Hello everyone! Is it all right to take lemsips, paracetamol etc for colds. Sniffle, sniffle 🤧😷🤒

Hello everyone! Is it all right to take lemsips, paracetamol etc for colds. Snif...

Juliet46

•6 years ago

11 Replies

Itching for years feeling let down.

I have been itching for years. I saw 3 Drs. One did a liver function test came back normal, 2 others Drs told me to take allergy tablets, told them it was so...

I have been itching for years. I saw 3 Drs. One did a liver function test came b...

nannybarb08

•6 years ago

6 Replies

Aspirin

Does anyone take aspirin even though they t on hydroxy

Petsch

•6 years ago

16 Replies

Supplements when on hydroxy

Does anyone take other supplements with ET It take calcium vitamin D biotin and really not sure if that’s ok when on hydroxy. If so when is it taken

Does anyone take other supplements with ET It take calcium vitamin D biotin and ...

Petsch

•6 years ago

19 Replies

Second opinion

Hi everyone in taking my mum to my local hospital in Barnsley South Yorkshire on Wednesday and im considering asking for a second opinion, She was diagnosed...

Hi everyone in taking my mum to my local hospital in Barnsley South Yorkshire on...

Jo_Ward

•6 years ago

16 Replies

Newly diagnosed – ET Jak2+ with added drama!

Hi everyone! I've been wanting to post here for some time, but it's taken me a couple of months to get a diagnosis and it's been a bit of a rollercoaster!...

Hi everyone! I've been wanting to post here for some time, but it's taken me a ...

Timjonze

•6 years ago

30 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2018

small rise in platelets ?

cramps

Rash/spots

Possible cure for calf cramps

Long haul flights

Blood Clots

Medicine

Platelets!

Curcumin

First time on Hydroxyurea

Metformin could be beneficial, esp combined with Ruxo

Moving home

Hydroxy

ET fatigue 😪😪

fundraising

Bone pain

Coq10

Time of day to take hydroxy

ET

Haemophilia

Ruxolitinib and high platelets

Apparent polycythemia and B12

Et

itching

Lemsips etc

Itching for years feeling let down.

Aspirin

Supplements when on hydroxy

Second opinion

Newly diagnosed – ET Jak2+ with added drama!

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