Posts - MPN Voice | HealthUnlocked

MPN Voice

11,252 members•15,727 posts

All posts for July 2012

I was diagnosed with PV and have to take Hydroxycarbamide. I'm breaking out in cold sores constantly. Has anyone else suffered with this?

jogging1

•13 years ago

11 Replies

just wondering, any 'young patients' with mpd's here? and if so how young and what mpd do u have, and what treatment are you getting?

kentuckyrain

•13 years ago

7 Replies

I have been diagnosed with PV. Can anyone recommend travel insurance for under 50s?

jogging1

•13 years ago

7 Replies

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Stem cell treatment for joint/hip repair for ET patients?

I wonder if anyone with ET have to face hip replacement surgery. I would rather go with stem cell treatment and appreciate if anyone can help with stem cell...

I wonder if anyone with ET have to face hip replacement surgery. I would rather ...

light

•13 years ago

1 Reply

Travel Insurance

Anyone having difficulty finding travel insurance? Went to new York earlier this year and almost found it almost impossible to source an insurance company...

Anyone having difficulty finding travel insurance? Went to new York earlier this...

R8afg

•13 years ago

11 Replies

Has anyone with ET successfully applied for Disability Living Allowance (DLA)?

Ginnyhelen

•13 years ago

10 Replies

Just been diagnosed with ET

Hi there, I have just been diagnosed with ET (this week). I don't know much about it but have read load of stuff on the internet and getting a bit confused. I...

Hi there, I have just been diagnosed with ET (this week). I don't know much abou...

sjdard

•13 years ago

13 Replies

I have PV I am just having venesection blood normal should I still have headaches and fatigue the specialist nurse thinks not is she right

hollymae

•13 years ago

3 Replies

Anyone any ideas on how to reduce the uncomfortable body itch that comes with PV ?. Tried various antihistamines with no success.

sutherland

•13 years ago

9 Replies

How have you had to change your life in response to your MPD?

rubyrubyruby

•13 years ago

13 Replies

How long did it take to come to terms with your condition?

I heard at one of the London forums that it is believed the average time is 2 years! My GP thought I was depressed and sent me on a course of cognitive...

I heard at one of the London forums that it is believed the average time is 2 ye...

ourlife

•13 years ago

22 Replies

I have ET my platelets are usually between 650 and 800, I dont take any meds apart from aspirin 75mg

do any of you,take other meds on this platelet level, i am 64.

treebeard

•13 years ago

22 Replies

I have MF and for the past week have had severe pain under my left ribs and back but only when I cough. Anyone else had this?

telvis

•13 years ago

11 Replies

Has anyone with ET had a stroke or a T.I.A?

vic01

•13 years ago

12 Replies

Has anyone been on meds for over 10 years ?

When I was diagnosed 12 years ago my Haematologist (I must add that he was not a nice man!) told me right from the beginning that my ET probably wouldn't kill...

When I was diagnosed 12 years ago my Haematologist (I must add that he was not a...

ourlife

•13 years ago

15 Replies

Has anyone successfully claimed on a critical illness insurance policy for an MPD ?

ourlife

•13 years ago

63 Replies

What are your current counts ?

I would be interested to know what everyone's counts are - and I think it shows how diverse our illness is. I have ET - my platelets are currently 798 - but...

I would be interested to know what everyone's counts are - and I think it shows ...

ourlife

•13 years ago

15 Replies

Does anyoneknow about myelo fibrosis and severe lung fibrosis

ardpatrick

•13 years ago

1 Reply

MAJIC (Ruxolitinib) Trial?

Has anyone put themselves forward for this? I saw my haematologist yesterday and she is putting my name down (I have also self-referred through MPD Voice)...

Has anyone put themselves forward for this? I saw my haematologist yesterday...

Jo_L

•13 years ago

16 Replies

Anyone manage platelet levels with something other than strong meds?

My platelet levels have increased significantly in 6 months since diagnosis in Jan 2012. I now believe that the stress/anxiety has played a big part as no...

My platelet levels have increased significantly in 6 months since diagnosis in J...

rubyrubyruby

•13 years ago

21 Replies

Does anyone eith ET have feet pain?

I have had bone pain for 20 years, joint pain for the last year and feet/heel pain in the last two months. I can barely walk. Been on Hydrea 2.5 years. Could...

I have had bone pain for 20 years, joint pain for the last year and feet/heel pa...

BlessedWithSix

•13 years ago

11 Replies

Do you have problems with miss-spelling words on the PC ?

This is a problem I encounter daily. I am convinced it is related to the cognitive problems caused by ET and/or the meds. A quick trawl through...

This is a problem I encounter daily. I am convinced it is related to the cog...

ETphonehome

•13 years ago

5 Replies

How to get Pegasys in UK

I am in Scotland and want to try Pegasys, I have PV and am treated wiht venisections and asprin only., this controls my counts. My haem says NHS guidelines say...

I am in Scotland and want to try Pegasys, I have PV and am treated wiht venisect...

Optimistic

•13 years ago

11 Replies

Does anyone have PRV, AND restless leg syndrome? Just wondered what sort of medication you take, if any. Thanks

Does anyone have polycythemia AND restless leg syndrome? Just wondered what sort of medication you take if any. Thanks.

Does anyone have polycythemia AND restless leg syndrome? Just wondered what so...

LouisePRV

Volunteer•13 years ago

6 Replies

HealthUnlocked forum layout and design ?

I am very appreciative that this forum was set up but does anyone else find it badly designed and difficult to navigate ? The front page is becoming crowded...

I am very appreciative that this forum was set up but does anyone else find it b...

ETphonehome

•13 years ago

5 Replies

Trial or not to Trial

I am now trialling SAR302503 - and am giving extra bloods, marrow & DNA samples to help future research. I would be interested in your experiences if you are...

I am now trialling SAR302503 - and am giving extra bloods, marrow & DNA samples ...

ourlife

•13 years ago

18 Replies

Exemption from prescription charges for MPD medication.

Are you taking medication for your MPD? Are you paying prescription charges for this medication? Well you don't need to. In 2008 the World Health...

Are you taking medication for your MPD? Are you paying prescription charges ...

Mazcd

Partner•13 years ago

11 Replies

Interferon v Peg. Interferon

Does anyone know if the new Peg. Interferon is more expensive than the standard Interferon?

Does anyone know if the new Peg. Interferon is more expensive than the standard ...

StreetPastor

•13 years ago

8 Replies

Life long clexane injection

For the past year I have been having daily Clexane injection .I have been told that I will need them life long . I was diagnosed with PV five years ago after...

For the past year I have been having daily Clexane injection .I have been told ...

KeithGW

•13 years ago

Be the first to reply

Stay positive and try not to become too anxious

I was diagnosed with ET over 16 years ago whilst pregnant. I was told very little about the illness, as I believe not a huge amount was known back then,...

I was diagnosed with ET over 16 years ago whilst pregnant. I was told very litt...

amarylis

•13 years ago

5 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2012

I was diagnosed with PV and have to take Hydroxycarbamide. I'm breaking out in cold sores constantly. Has anyone else suffered with this?

just wondering, any 'young patients' with mpd's here? and if so how young and what mpd do u have, and what treatment are you getting?

I have been diagnosed with PV. Can anyone recommend travel insurance for under 50s?

Stem cell treatment for joint/hip repair for ET patients?

Travel Insurance

Has anyone with ET successfully applied for Disability Living Allowance (DLA)?

Just been diagnosed with ET

I have PV I am just having venesection blood normal should I still have headaches and fatigue the specialist nurse thinks not is she right

Anyone any ideas on how to reduce the uncomfortable body itch that comes with PV ?. Tried various antihistamines with no success.

How have you had to change your life in response to your MPD?

How long did it take to come to terms with your condition?

I have ET my platelets are usually between 650 and 800, I dont take any meds apart from aspirin 75mg

I have MF and for the past week have had severe pain under my left ribs and back but only when I cough. Anyone else had this?

Has anyone with ET had a stroke or a T.I.A?

Has anyone been on meds for over 10 years ?

Has anyone successfully claimed on a critical illness insurance policy for an MPD ?

What are your current counts ?

Does anyoneknow about myelo fibrosis and severe lung fibrosis

MAJIC (Ruxolitinib) Trial?

Anyone manage platelet levels with something other than strong meds?

Does anyone eith ET have feet pain?

Do you have problems with miss-spelling words on the PC ?

How to get Pegasys in UK

Does anyone have PRV, AND restless leg syndrome? Just wondered what sort of medication you take, if any. Thanks

HealthUnlocked forum layout and design ?

Trial or not to Trial

Exemption from prescription charges for MPD medication.

Interferon v Peg. Interferon

Life long clexane injection

Stay positive and try not to become too anxious

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