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MPN Voice

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All posts for September 2012

What are the typical signs of essential Thrombocytosis?

I worry I might have MPD. My platelets are high. WBC is elevated also neutrophils. Chest pain and burning sensation in my feet and arms I noticed for a couple...

I worry I might have MPD. My platelets are high. WBC is elevated also neutrophil...

Brianna

•13 years ago

7 Replies

Has anyone experienced a rapid rise in haematocrit?

I had a blood test on the 13th August and my haematocrit was 0.45 but by the time I had my next blood test on 10th September it had risen to 0.49 It had...

I had a blood test on the 13th August and my haematocrit was 0.45 but by the tim...

Jo_L

•13 years ago

5 Replies

ITCHY SKIN

Sorry that was itchy skin, had fingers on wrong keys! Can anyone suggest anything to try for recently diagnosed husband MF, waiting on appt at hospital but...

Sorry that was itchy skin, had fingers on wrong keys! Can anyone suggest anythi...

tissi

•13 years ago

9 Replies

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Anyone know haemotologist in Scotland using Pegasys

I am considering Pegasys and wondered if anyone else in Scotland is being treated by any haems who using it.

I am considering Pegasys and wondered if anyone else in Scotland is being trea...

Optimistic

•13 years ago

6 Replies

Irxhy akin

Husband waiting first appt after being diagnosed MF following PV. Can anyone help with his itchy skin. He is fine all day then at bedtime wham the itching...

Husband waiting first appt after being diagnosed MF following PV. Can anyone hel...

tissi

•13 years ago

1 Reply

The fatigue!

I was diagnosed with PV in June this year after being told I was just depressed! Had two venesections, felt good after first one but not much improvement in...

I was diagnosed with PV in June this year after being told I was just depressed!...

Aime

•13 years ago

14 Replies

Would hydroxyurea affect INR levels?

Have been on HU 500mg a day since June. Recently increased and have found my INR levels have risen. Nurse struggling to get this under control. She doesn't...

Have been on HU 500mg a day since June. Recently increased and have found my INR...

R8afg

•13 years ago

4 Replies

Do you suffer from quick onset headaches? I often get a constant pain in my head that feels like a nail is being pushed in. I have ET.

The headaches started before Hydrea but became worse after on the med for a year.

The headaches started before Hydrea but became worse after on the med for a year...

BlessedWithSix

•13 years ago

6 Replies

How is ET classified?

Have got very confused reading different site and information. Is ET classified and a blood disorder or is a form of leukaemia?

Have got very confused reading different site and information. Is ET classified...

sjdard

•13 years ago

2 Replies

Hi newly diagnosed husband with MF following six years with PV.

Terrified of what I read on the internet. Is there any hope.

tissi

•13 years ago

11 Replies

Are MPNs more common than we think?

I attended my 3 monthly hospital appointment today and for the first time saw the nurse specialist instead of the Consultant. It was the first time I was able...

I attended my 3 monthly hospital appointment today and for the first time saw th...

Hidden

•13 years ago

4 Replies

living abroad

I am 58 have pv diagnosed last year. I am considering living in Spain for 2 to 3 month periods. I dont want to break my links with the UK because of my...

I am 58 have pv diagnosed last year. I am considering living in Spain for 2 to 3...

pedders

•13 years ago

7 Replies

Hydroxycarbamide side effects

There are many websites listing the side effects of HC, I have ET and anticipate that at some stage in the future will require to take this drug. Can you...

There are many websites listing the side effects of HC, I have ET and anticipate...

Alired

•13 years ago

11 Replies

Wow there's a group for Essential Thrombocythaemia!!

So after living with ET for the past 10years and never doing any research into what it was or how many other people are affected by it, I thought it was time...

So after living with ET for the past 10years and never doing any research into w...

Jennie_Barnes

•13 years ago

14 Replies

Why is SCT a last option for MPD's patients?

I have been diagnosed with ET November 2011 and been on Hydroxycarbomide ever since, on different dosages and Aspirin on different dosages. I am doing well at...

I have been diagnosed with ET November 2011 and been on Hydroxycarbomide ever si...

light

•13 years ago

8 Replies

Cardiff MPDVoice 4th October

Look forward to meeting anyone who is going. Am doing a small turn on my experience, might talk about Myelofibrosis and BMT as well. :-) Chris

Look forward to meeting anyone who is going. Am doing a small turn on my experie...

MFBMT2011

•13 years ago

5 Replies

Can anyone given me any advice re; Interferon

I am due to start interferon meds very soon due to unstable counts on hydrea, the Hem has warned me I am in for a period of ajustment which maybe very...

I am due to start interferon meds very soon due to unstable counts on hydrea, th...

Marie95

•13 years ago

10 Replies

Positive Care Plan with AIG.

I have the above policy which I pay through my company that I work for. It is for any type of cancer. I am confused, what ET is classified as, some internet...

I have the above policy which I pay through my company that I work for. It is f...

sjdard

•13 years ago

4 Replies

Being positive about it and finding meaning and purpose to rest of life!

Well life has to go on ....and so I have recently picked up further studies in counselling after15 years. Had just done 1 year and got Certificate. Now I am...

Well life has to go on ....and so I have recently picked up further studies in c...

Daeminee

•13 years ago

10 Replies

Been having heel pain a lot these days....wondering if any ET patients have the same and what they are doing about it???

...wondering if any ET patients have the same and what they are doing about it???Am at a loss as it stops me from getting on with my life

...wondering if any ET patients have the same and what they are doing about it??...

Daeminee

•13 years ago

6 Replies

Returning to work?

I had 2 TIAs in June 2011 brought on by PV im on 7 tablets a day including hydrox and blood pressure tablets. I have been to see occupational health through...

I had 2 TIAs in June 2011 brought on by PV im on 7 tablets a day including hydr...

pedders

•13 years ago

7 Replies

Has anyone noticed that their skin is easily broken, e.g. when gardening?

I have MF, which 'migrated' from PVR about 3 years ago. (I was diagnosed with PVR in 1983). Lately I have noticed that my skin seems to be getting frail. I...

I have MF, which 'migrated' from PVR about 3 years ago. (I was diagnosed with PV...

MichaelS

•13 years ago

5 Replies

Has anyone had trouble getting venflons in or having bloods taken?

I had a contrast dye scan last week - after four attempts they went into a vein in my foot. Although they successfully got the cannula in twice in veins in my...

I had a contrast dye scan last week - after four attempts they went into a vein ...

janesid

•13 years ago

6 Replies

Has anyone with PV just been managed with Venesection

hollymae

•13 years ago

4 Replies

Were any other ET patients "easy bruisers" in childhood?

I have always bruised easily and could never account for how I'd got the bruises. My daughter (who is 9) is the same. She does have a very active life of...

I have always bruised easily and could never account for how I'd got the bruises...

Loubielou

•13 years ago

4 Replies

Has anyone tried acupuncture for MPDs and particularily for the painful feet associated with the condition?

myelo

•13 years ago

4 Replies

I have noticed lately that my lips and fingertips are going blue on occasions, does anybody else get this?

stevenjust

•13 years ago

3 Replies

Prescription Charges.

I was wondering has anybody got a medical exemption certificate cos they take Hydrocarbamide for there condition.

I was wondering has anybody got a medical exemption certificate cos they take Hy...

sjdard

•13 years ago

22 Replies

Good news!!

After being diagnosed with E.T. eleven months ago & going through some stuff, I am now over the moon..............it appears there is life after diagnosis & I...

After being diagnosed with E.T. eleven months ago & going through some stuff, I ...

StreetPastor

•13 years ago

13 Replies

Flu jab / pneumonia jab is offered to PV patients in US . Do I need this ?

I was diagnosed with PV at the beginning of this year. Can any one tell me if I should get a flu jab /pneumonia jab. As I am only in my mid 40's I am not on...

I was diagnosed with PV at the beginning of this year. Can any one tell me if I ...

Titatagg

•13 years ago

7 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2012

What are the typical signs of essential Thrombocytosis?

Has anyone experienced a rapid rise in haematocrit?

ITCHY SKIN

Anyone know haemotologist in Scotland using Pegasys

Irxhy akin

The fatigue!

Would hydroxyurea affect INR levels?

Do you suffer from quick onset headaches? I often get a constant pain in my head that feels like a nail is being pushed in. I have ET.

How is ET classified?

Hi newly diagnosed husband with MF following six years with PV.

Are MPNs more common than we think?

living abroad

Hydroxycarbamide side effects

Wow there's a group for Essential Thrombocythaemia!!

Why is SCT a last option for MPD's patients?

Cardiff MPDVoice 4th October

Can anyone given me any advice re; Interferon

Positive Care Plan with AIG.

Being positive about it and finding meaning and purpose to rest of life!

Been having heel pain a lot these days....wondering if any ET patients have the same and what they are doing about it???

Returning to work?

Has anyone noticed that their skin is easily broken, e.g. when gardening?

Has anyone had trouble getting venflons in or having bloods taken?

Has anyone with PV just been managed with Venesection

Were any other ET patients "easy bruisers" in childhood?

Has anyone tried acupuncture for MPDs and particularily for the painful feet associated with the condition?

I have noticed lately that my lips and fingertips are going blue on occasions, does anybody else get this?

Prescription Charges.

Good news!!

Flu jab / pneumonia jab is offered to PV patients in US . Do I need this ?

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