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MPN Voice

10,437 members • 14,386 posts

All posts for January 2013

Does anyone else compete in competitive sport who has PV?

I've recently been diagnosed with PV and just had my first venesection. Before this I have been competing in triathlons and duathlons and don't know whether it...

I've recently been diagnosed with PV and just had my first venesection. Before t...

lizl

•11 years ago

10 Replies

Hi everybody, been on HU now for 11 years and recently been having random stabbing pains in my head.

It stops me in my tracks for a split second. Anyone experience anything like this. Thanks Denise

It stops me in my tracks for a split second. Anyone experience anything like thi...

DENMOOR

•11 years ago

8 Replies

Does anyone know if Hydrogen Peroxide therapy can help MPD patients?

It is known that Hydrogen Peroxide Therapy is very good in destroying cancerous cells. It kills cancer cells. Can this work for us MPD patients?

It is known that Hydrogen Peroxide Therapy is very good in destroying cancerous ...

light

•11 years ago

9 Replies

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Venesections for ET ?

After nearly 14 years with ET I have had my first venesection today as my PCV and HB were classed too high, platelets at 433.Reading past posts it seems this...

After nearly 14 years with ET I have had my first venesection today as my PCV an...

ourlife

•11 years ago

7 Replies

Haematocrit for those with PV

Hi, I am due to go for my next check up at the hospital tomorrow and wondered what levels others had their HCT maintained at? I am female, in my 30's...

Hi, I am due to go for my next check up at the hospital tomorrow and wondered...

Foss33

•11 years ago

12 Replies

Blood tests; how'd you handle 'em ?

Two years into my PV and I've now got into a noticeable routine; with, thankfully, my blood tests at 3 monthly intervals, I don't give them (or my PV) a...

Two years into my PV and I've now got into a noticeable routine; with, thankfu...

KevinJH

•11 years ago

12 Replies

Does anyone have difficulty making a GP appointment?

I came home from work totally exhausted yesterday and felt dreadful, went to bed after tea and stayed there until this morning, rang my GP at 8.30 am to make...

I came home from work totally exhausted yesterday and felt dreadful, went to bed...

Hidden

•11 years ago

8 Replies

Burning Feet and Legs

Hello all. Husband with PV at hospital today and at long last his red cell count is slowly rising after his major stomach bleed which they put down to...

Hello all. Husband with PV at hospital today and at long last his red cell coun...

tissi

•11 years ago

9 Replies

I had a bone marrow biopsy on 14th January and would appreciate some advice from anyone else who's had one.

The swelling and bruising has largely settled now but I have a very distinct lump below the skin and underneath one of the entry points. The lump can be...

The swelling and bruising has largely settled now but I have a very distinct lum...

Jo_L

•11 years ago

9 Replies

I live in Colchester area. Not happy with Hospital.My condition i.e.E.T ./ Vera.Would like to change Hospitals.Any suggestions please? V.

mc7232

•11 years ago

6 Replies

My haematocrit seems to creeping up.

Hi. My haematocrit seems to be creeping up on a regular basis. Usually around 45 by which time my sleep tends to be disrupted and my gums bleed. My...

Hi. My haematocrit seems to be creeping up on a regular basis. Usually around ...

LouisePRV

Volunteer•11 years ago

10 Replies

Has anyone developed chemical sensitivity or severe food allergy since taking hydroxicarbamide?

LouisePRV

Volunteer•11 years ago

3 Replies

Does anyone have problems having venesection?

Just had a venesection yesterday, not had one for a while no problems in the past, but this time was very hard to find a vein, after several attempts got...

Just had a venesection yesterday, not had one for a while no problems in the pas...

littled

•11 years ago

7 Replies

Does anyone else experience an uncomfortable cramp like pain in their heart in bed at night when they lie on their back.

Also pins and needles in their arms which wakes them up with the severity? I have been experiencing this for a while, is it just another symptom?

Also pins and needles in their arms which wakes them up with the severity? I ha...

Hidden

•11 years ago

8 Replies

Does anyone get itch from PRV or other similar afflictions?

Any water on my torso or limbs caused severe 'itch', which felt like a hundred mosquitoes biting at once. Having a bath was like inviting a horde of biters to...

Any water on my torso or limbs caused severe 'itch', which felt like a hundred m...

ABman

•11 years ago

13 Replies

Does anyone know if skin cancer is part of PRV. I have had two breakouts in the last couple of months. One on my face &one on my neck. PATT

Patt

•11 years ago

3 Replies

Diagnosed PV July 2012, last 2 months bothered by night sweats. Haematologist seems to be panicking sweats not normal symptom of PV?

Aime

•11 years ago

15 Replies

ET and Pernitious Anaemia help please

I have had ET for 3 yrs and receiving hydro/anagralide/asprin treatment. 12 mths ago i started experiencing continuous pain (similar to cramp) in one leg, it...

I have had ET for 3 yrs and receiving hydro/anagralide/asprin treatment. 12 mth...

sheldale

•11 years ago

8 Replies

Can any forum member give me any information on query below, it would be much appreciated. Thank you. Johnj

I have been invited to take part in MAJIC Clinical Trials for patients who have PV or ET. I have ET and have been treated for this condition since Aug 2000 I...

I have been invited to take part in MAJIC Clinical Trials for patients who have ...

Johnj

•11 years ago

7 Replies

Possible link, High Prolactin and polycythaemia vera

I would just like to ask you all if anyone amongst the community has a history of hyperprolactinaemia. When I was 28 years old I was diagnosed with a benign...

I would just like to ask you all if anyone amongst the community has a history o...

Hidden

•11 years ago

5 Replies

Does anyone have any knowledge/experience of reducing platelet count by collection (thrombapheresis)?

I was diagnosed with PV in November and my counts (red cells, haematocrit etc) have been reduced by means of venesections. My consultant suggests medication...

I was diagnosed with PV in November and my counts (red cells, haematocrit etc) h...

Ekkles

•11 years ago

6 Replies

Buy your tickets NOW... for the Spring Swing Ball

Hi Everyone, I hope everyone had a fab Christmas and New Year! I just wanted to let you all know I have decided to go ahead with the charity ball in May...

Hi Everyone, I hope everyone had a fab Christmas and New Year! I just want...

Jennie_Barnes

•11 years ago

4 Replies

Medical exemption on the NHS for PV?

Im 59 and have had pv for 18 months. Does anybody know is pv classed as a medical exemption on the NHS? Im thinking of going back to work and will loose my...

Im 59 and have had pv for 18 months. Does anybody know is pv classed as a medica...

pedders

•11 years ago

3 Replies

Flu and ET

Can anyone tell me of their experience with flu and having ET. I'm always exhausted as it is but do I need to worry if I get an infection of any kind ? Seems...

Can anyone tell me of their experience with flu and having ET. I'm always exhaus...

Ginny11

•11 years ago

6 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2013

Does anyone else compete in competitive sport who has PV?

Hi everybody, been on HU now for 11 years and recently been having random stabbing pains in my head.

Does anyone know if Hydrogen Peroxide therapy can help MPD patients?

Venesections for ET ?

Haematocrit for those with PV

Blood tests; how'd you handle 'em ?

Does anyone have difficulty making a GP appointment?

Burning Feet and Legs

I had a bone marrow biopsy on 14th January and would appreciate some advice from anyone else who's had one.

I live in Colchester area. Not happy with Hospital.My condition i.e.E.T ./ Vera.Would like to change Hospitals.Any suggestions please? V.

My haematocrit seems to creeping up.

Has anyone developed chemical sensitivity or severe food allergy since taking hydroxicarbamide?

Does anyone have problems having venesection?

Does anyone else experience an uncomfortable cramp like pain in their heart in bed at night when they lie on their back.

Does anyone get itch from PRV or other similar afflictions?

Does anyone know if skin cancer is part of PRV. I have had two breakouts in the last couple of months. One on my face &one on my neck. PATT

Diagnosed PV July 2012, last 2 months bothered by night sweats. Haematologist seems to be panicking sweats not normal symptom of PV?

ET and Pernitious Anaemia help please

Can any forum member give me any information on query below, it would be much appreciated. Thank you. Johnj

Possible link, High Prolactin and polycythaemia vera

Does anyone have any knowledge/experience of reducing platelet count by collection (thrombapheresis)?

Buy your tickets NOW... for the Spring Swing Ball

Medical exemption on the NHS for PV?

Flu and ET

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