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MPN Voice

10,722 members • 14,843 posts

All posts for October 2017

Venesections and blood tests when on holiday

We hope to go on a long trip in Europe, I was wondering if anyone had ever arranged Venesections and blood tests when on holiday?

We hope to go on a long trip in Europe, I was wondering if anyone had ever arran...

shiftzz

•7 years ago

1 Reply

Change of season cause problems?

Hi all I just wanted to ask if any of you feel worse now that Autumn and the associated colder weather affects your symptoms? My joint pains have got a lot...

Hi all I just wanted to ask if any of you feel worse now that Autumn and the ass...

Jellybean129

•7 years ago

12 Replies

Does Hydroxycarbamide cause excessive wind

Since I was put on Hydroxycarbamide last November, I also went on an elimination diet of no tea, coffee, sugar, gluten or dairy. I started to lose weight...

Since I was put on Hydroxycarbamide last November, I also went on an elimination...

Searcher56

•7 years ago

6 Replies

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Badger

Hi I'm badger 4 years PoV live Northumberland

Badger1

•7 years ago

5 Replies

New with ET and this week I completely fell apart

I was diagnosed with ET in late August with fatigue and lightheadedness being my primary symptoms. I'm JAK2+ and my latest platelets are 800. I take a daily...

I was diagnosed with ET in late August with fatigue and lightheadedness being my...

MaryELWoods

•7 years ago

23 Replies

Flu Jab

I went for my annual flu jab today at my GP surgery. I know it's not a live vaccine but I always check just before they jab me. My own GP knows me very well...

I went for my annual flu jab today at my GP surgery. I know it's not a live vac...

piggie50

•7 years ago

19 Replies

ET "Fatigue Bomb"

It's funny you know, when you have an MPN you think that you have adaped to the fatigue bombs that hit you. But when they hit, it still surprises me nearly 3...

It's funny you know, when you have an MPN you think that you have adaped to the ...

Kinsale

•7 years ago

33 Replies

Forgot to take Aspirin

I've just realised that I forgot to take my Aspirin yesterday (I usually take it between 6 and 9 pm) - should I take it now or just forget about it?

I've just realised that I forgot to take my Aspirin yesterday (I usually take it...

Debborah

•7 years ago

9 Replies

Pegasys

Just started Pegasys last night, so far so good. Dose 45mg, they gave me 90 g, so 50% wasted... Anyone know of the cost of Pegasys By the way I attended the...

Just started Pegasys last night, so far so good. Dose 45mg, they gave me 90 g, s...

shiftzz

•7 years ago

1 Reply

Newcastle Forum 2017

This was my first MPN Forum. I went with my daughter and sis and we all thoroughly enjpyed it . Lucy and Sue partucularly enjoyed the family group session. All...

This was my first MPN Forum. I went with my daughter and sis and we all thorough...

Dianne-Guisborough

•7 years ago

3 Replies

Hydroxycarbamide side effects

My partner commenced hydroxycarbamide about a month ago and although he has not suffered any major side effects he has just started to get a few mouth ulcers....

My partner commenced hydroxycarbamide about a month ago and although he has not ...

Joybard

•7 years ago

24 Replies

Blood test departments: not very user friendly

Hi The blood test department at the East Surrey hospital has a notice saying take a numbered ticket if you need a blood test - and also another notice saying...

Hi The blood test department at the East Surrey hospital has a notice saying ta...

Rachelthepotter

•7 years ago

1 Reply

Help yourself .eat to be well ...

I had my 8 weeks check up at the oncology unit at hospital yesterday ,,my results were excellent my blood tests surprised the specialist doctor ..I have had my...

I had my 8 weeks check up at the oncology unit at hospital yesterday ,,my result...

Twinkly

•7 years ago

13 Replies

A symptomatic

How can a gp say a condition like ET is asymptomatic. With rising platelets..hot sweats.. migraine.. undertreatment with aspirin. Just had a medical review...

How can a gp say a condition like ET is asymptomatic. With rising platelets..ho...

heathermc

•7 years ago

16 Replies

ET & CBD OIL

Can anyone tell me if we have ET can we use CBD Oil? I know if you have inflammation it increases your platelets, so, as I have inflammation I'm told that CBD...

Can anyone tell me if we have ET can we use CBD Oil? I know if you have inflamma...

130396

•7 years ago

18 Replies

thrombocytosis?

Not sure if this is the right place to post this but, I have been under the rheumatologist the past 2 years ( Recently been diagnosed with UCTD start of lupus)...

Not sure if this is the right place to post this but, I have been under the rheu...

Hidden

•7 years ago

6 Replies

PV - Tight Chest

Hi everyone. Firstly - I was at the MPN Voice conference in Birmingham last Friday which was excellent! If you have not been to one before and have an MPN you...

Hi everyone. Firstly - I was at the MPN Voice conference in Birmingham last Frid...

Disney71

•7 years ago

10 Replies

Blood counts gone up

I am being treated by a haematology team for PV and rarely get to see the same haematologist twice - the doctor I saw at my latest appointment has said that it...

I am being treated by a haematology team for PV and rarely get to see the same h...

RosemaryHarper

•7 years ago

5 Replies

Newcastle MPN Forum

Hi Maz I hope you are keeping well . After just getting diagnosed in late 2016 I am looking foward to my first MPN Forum at Newcastle on Friday . I am...

Hi Maz I hope you are keeping well . After just getting diagnosed in late 2016 ...

Dianne-Guisborough

•7 years ago

4 Replies

High platelets count

Hello, am 29 years old and I did a blood test 1 week ago and it showed a high platelets 540 after that I repeated the test 3 days after and i found that the...

Hello, am 29 years old and I did a blood test 1 week ago and it showed a high pl...

Lamya8A

•7 years ago

16 Replies

Pain around upper back and ribs

I was diagnosed with ET this summer. I was wondering if anyone had pain in upper back mainly along spine. This is my only symptom. It doesn't hurt every day...

I was diagnosed with ET this summer. I was wondering if anyone had pain in upper...

Griffey

•7 years ago

3 Replies

Send in your Qs for tomorrow's live event!

Got questions about an MPN? Send them in for Patient Power's town meeting live from Houston TOMORROW with MD Anderson’s Dr. Verstovsek and other experts....

Got questions about an MPN? Send them in for Patient Power's town meeting live f...

tclementi

•7 years ago

2 Replies

Anyone with ET from California?

I'd love to find people near me and hear who their doctors are.

MaryELWoods

•7 years ago

13 Replies

Aching Ribs

Morning all, I feel like I am learning so much from this group thank you, quick question recently feeling lots of aching in my rib cage area anyone any...

Morning all, I feel like I am learning so much from this group thank you, quick ...

Cliffe2003

•7 years ago

7 Replies

Quick question

My husband was diagnosed with Myelofibrosis about a year ago and is on Hydro and Ruxolitinib. He has been doing very well on these drugs .At moment he is in...

My husband was diagnosed with Myelofibrosis about a year ago and is on Hydro and...

Marianjones54

•7 years ago

3 Replies

Hello from a newby!

Hi all Thought I’d introduce myself. I’ve read a lot of your posts and find you all a mine of information, caring, funny and very supportive. Having got my...

Hi all Thought I’d introduce myself. I’ve read a lot of your posts and find you ...

Jellybean129

•7 years ago

16 Replies

Clopidogrel

Hello, is anyone taking clopidogrel, i commenced taking them 3 days ago.

linphy

•7 years ago

20 Replies

Jak2+

HI what jak2+ means is that you may be more inclined to have blood clots and at worse a stroke but that is very remote chance of that happening your consultant...

HI what jak2+ means is that you may be more inclined to have blood clots and at ...

Scottishterrier

•7 years ago

Be the first to reply

38 and just found out I am JAK2+

Hi All, I was informed yesterday that my JAK2 test came back positive. It is hard to understand what exactly that means in regards to my health and what I...

Hi All, I was informed yesterday that my JAK2 test came back positive. It is har...

Spectabilis

•7 years ago

12 Replies

Appointment with Claire Harrison

Well what can I say, this is the best clinic I have ever been to. Everybody was so nice making me feel welcome. There were a few teething problem as they have...

Well what can I say, this is the best clinic I have ever been to. Everybody was ...

sjdard

•7 years ago

4 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2017

Venesections and blood tests when on holiday

Change of season cause problems?

Does Hydroxycarbamide cause excessive wind

Badger

New with ET and this week I completely fell apart

Flu Jab

ET "Fatigue Bomb"

Forgot to take Aspirin

Pegasys

Newcastle Forum 2017

Hydroxycarbamide side effects

Blood test departments: not very user friendly

Help yourself .eat to be well ...

A symptomatic

ET & CBD OIL

thrombocytosis?

PV - Tight Chest

Blood counts gone up

Newcastle MPN Forum

High platelets count

Pain around upper back and ribs

Send in your Qs for tomorrow's live event!

Anyone with ET from California?

Aching Ribs

Quick question

Hello from a newby!

Clopidogrel

Jak2+

38 and just found out I am JAK2+

Appointment with Claire Harrison

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