Posts - MPN Voice | HealthUnlocked

MPN Voice

10,431 members • 14,373 posts

All posts for March 2013

Hi, Does anyone out there have PRV and Rheumatoid Arthritis? If so, what medication do you take? Thanks.

piggie50

•11 years ago

3 Replies

Fatigue not consistent with blood counts

Just had Hct result .41 which is good but the fatigue has been quite bad this week and so has the itch!! I thought a pattern was forming with blood counts...

Just had Hct result .41 which is good but the fatigue has been quite bad this we...

Aime

•11 years ago

15 Replies

MPDlife newsletter - March edition

The March edition of MPDlife - the newsletter for people with MPDs is now available. Articles include: NICE recommendations for Ruxolitinib – latest...

The March edition of MPDlife - the newsletter for people with MPDs is now availa...

Mazcd

Partner•11 years ago

5 Replies

Want to take advantage of all our features? Just log in!

Recently started on Interferon injections and platelet count now on way down at 940. Feeling nauseous is this usual?

Redheugh

•11 years ago

7 Replies

Osteoarthritis and PV is there a connection?

Osteoarthritis getting worse in more and more joints - my cartilage seems to be wearing thin quite easily. I also seem to be prone to nerve compression...

Osteoarthritis getting worse in more and more joints - my cartilage seems to be ...

Aime

•11 years ago

9 Replies

Anyone know anything about kidney stones and PV/ET? I have just had an ultrasound an told I am "peppered" with them!

Haem says "nothing to do with him" but i feel he is economical with the truth when he thinks i don't need to know or am taking up his precious time!

Haem says "nothing to do with him" but i feel he is economical with the truth wh...

jane13

•11 years ago

7 Replies

Is it possible to have both ET and PV as I have symptoms and blood counts associated with both

steve_m

•11 years ago

16 Replies

PV and a high white blood count

Hello everyone. Husband has PV and at the hospital today usual worries before and after. After having a stomach bleed and anaemia for the past year his red...

Hello everyone. Husband has PV and at the hospital today usual worries before a...

tissi

•11 years ago

4 Replies

Periods stopped...

I was diagnosed with PV last year. I have been on hydroxycarbamide for 10 months and haven't had a period for 6 months. I had a blood test to see if I was...

I was diagnosed with PV last year. I have been on hydroxycarbamide for 10 months...

jogging1

•11 years ago

5 Replies

Has anyone gone past the menopause with PV?

Hi just been confirmed I am post menopausal and waiting for my next haematology appt, to discuss possible HRT as my family doctor is not sure of the side...

Hi just been confirmed I am post menopausal and waiting for my next haematology ...

littled

•11 years ago

7 Replies

Hi Everyone, I have just found out I have very elevated liver enzymes (ATL) 100,

am on Interferon alpha (or was) hem sending me for an ultrasound scan this week, it hasn't been raised prevously, have bee n taking IFN for around 5 months,...

am on Interferon alpha (or was) hem sending me for an ultrasound scan this week,...

Marie95

•11 years ago

2 Replies

Newcastle Forum Friday 15th March. Feed back

This was first forum, i did know what to exspect, in my head i was looking for answers! I recieved a letter saying that the speaker was Mary Frances McMullen...

This was first forum, i did know what to exspect, in my head i was looking for a...

wendycu

•11 years ago

1 Reply

My husband has MF can you tell me the difference between MF and ET and PV I do find this very confusing

ardpatrick

•11 years ago

2 Replies

My views on my first forum in Newcastle. What did you think?

This afternoon I went to my first forum in Newcastle. The format was very much as I had imagined, with Haemotologist speakers from the locality, and I was...

This afternoon I went to my first forum in Newcastle. The format was very much a...

lizl

•11 years ago

7 Replies

Vascular eczema

Hello, after being told my husband with polycythemia had been suffering cellulitis both legs for a year and been on antibiotics all this time, dermatology now...

Hello, after being told my husband with polycythemia had been suffering celluli...

tissi

•11 years ago

3 Replies

Newcastle Patients' Forum - CHANGE OF ROOM

I have just been informed that the forum will now be held in The Grainger Suite, Centre for Life, not the Marlborough Suite. The rooms are next to each other,...

I have just been informed that the forum will now be held in The Grainger Suite,...

Mazcd

Partner•11 years ago

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Does anyone else experience visual (ocular) migraines?

I have PV and have just had an extremely quick visit to the optician after the words on my computer screen started dropping and strange things were happening...

I have PV and have just had an extremely quick visit to the optician after the w...

Aime

•11 years ago

14 Replies

Anyone going to the forum in Newcastle on Friday?

I'm going to the forum on Friday in Newcastle, which will be my first one. Has anyone else been to one? What can I expect? Lizl

I'm going to the forum on Friday in Newcastle, which will be my first one. Has a...

lizl

•11 years ago

12 Replies

Social worker support

When I was diagnosed with Leukaemia I was very quickly put in contact with a social worker who was great and really useful, i've never been offered that...

When I was diagnosed with Leukaemia I was very quickly put in contact with a soc...

Jennie_Barnes

•11 years ago

26 Replies

Does ET affect my bone density?

buddin11

•11 years ago

11 Replies

Eire

As a 'newbie' I hope I can share my experiences with you. I was diagnosed with MF 4 years ago and am now on a Clinical Trial taking Ruxolitinib (15mg in the...

As a 'newbie' I hope I can share my experiences with you. I was diagnosed with M...

eire

•11 years ago

7 Replies

Anyone with PV/ET know if you can use Jacuzzi, Sauna’s and Steam Rooms?

Going away for the weekend soon, the Hotel has these facilities and I'd love to use them but not sure if its safe. I've recently had a few dizzy spells which...

Going away for the weekend soon, the Hotel has these facilities and I'd love to ...

NewBloom

•11 years ago

4 Replies

Hi, I was diagnosed with ET 18 months ago and am on aspirin. My platelets are on the move and my Haem wants me to consider hydroxycarbamide

I'm not sure which I'm more afraid of, a chemo drug or a stroke. Anyone else faced this dilemma?

I'm not sure which I'm more afraid of, a chemo drug or a stroke. Anyone else fac...

jamieisabella

•11 years ago

10 Replies

Any tips on injecting interferon (Pegasys)?

I've recently started on Pegasys (my third injection will be on the 9th March) and I was wondering if anyone would like to share their experiences of injecting...

I've recently started on Pegasys (my third injection will be on the 9th March) a...

Jo_L

•11 years ago

3 Replies

In support group for my Contributory ESA benefit. I have ET, symptoms mild but include fatigue and mood swings. Should I be?

Liver Transplant in April last year due to Budd-Chiari secondary to ET as cause. Feel I want to break free of benefit one day, grateful for it the next as my...

Liver Transplant in April last year due to Budd-Chiari secondary to ET as cause....

nickprich

•11 years ago

2 Replies

Is agent orange and the dioxin from AO (TCDD) a potential cause of my MPD,essential Thombocytosis.

I am a 64 year old Viet-Nam veteran and was stationed in Danang for 1 year(1970/1971).I was exposed to agent orange during that time(as ALL who set foot on...

I am a 64 year old Viet-Nam veteran and was stationed in Danang for 1 year(1970/...

Hidden

•11 years ago

3 Replies

Burning legs and feet at night early hours

Hi can anyone help please. Husband PV. He has been suffering from hot legs and feet in bed after being asleep he wakes up and has burning legs and feet. He...

Hi can anyone help please. Husband PV. He has been suffering from hot legs and...

tissi

•11 years ago

4 Replies

Did anyone feel tipsy when they first started taking HU?

My consultant has just (3 days ago) put me on HU and I feel as though I have had a stiff drink on an empty stomach, and feel spaced out. Has anyone...

My consultant has just (3 days ago) put me on HU and I feel as though I have had...

Ekkles

•11 years ago

4 Replies

Ruxolitinib as a treatment for Myelofibrosis (MF) – NICE draft guidance - UPDATE

Further to the NICE draft guidance not recommending Ruxolitinib (Jakavi, Novartis), for the treatment of disease-related splenomegaly (enlarged spleen) or...

Further to the NICE draft guidance not recommending Ruxolitinib (Jakavi, Novarti...

Mazcd

Partner•11 years ago

3 Replies

Veins in hiding

Do everyone's elses veins go into hiding with frequent usage for blood tests, venesections, dye for scans, etc? I used to have no bother at all when docs...

Do everyone's elses veins go into hiding with frequent usage for blood tests, ve...

Aime

•11 years ago

4 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2013

Hi, Does anyone out there have PRV and Rheumatoid Arthritis? If so, what medication do you take? Thanks.

Fatigue not consistent with blood counts

MPDlife newsletter - March edition

Recently started on Interferon injections and platelet count now on way down at 940. Feeling nauseous is this usual?

Osteoarthritis and PV is there a connection?

Anyone know anything about kidney stones and PV/ET? I have just had an ultrasound an told I am "peppered" with them!

Is it possible to have both ET and PV as I have symptoms and blood counts associated with both

PV and a high white blood count

Periods stopped...

Has anyone gone past the menopause with PV?

Hi Everyone, I have just found out I have very elevated liver enzymes (ATL) 100,

Newcastle Forum Friday 15th March. Feed back

My husband has MF can you tell me the difference between MF and ET and PV I do find this very confusing

My views on my first forum in Newcastle. What did you think?

Vascular eczema

Newcastle Patients' Forum - CHANGE OF ROOM

Does anyone else experience visual (ocular) migraines?

Anyone going to the forum in Newcastle on Friday?

Social worker support

Does ET affect my bone density?

Eire

Anyone with PV/ET know if you can use Jacuzzi, Sauna’s and Steam Rooms?

Hi, I was diagnosed with ET 18 months ago and am on aspirin. My platelets are on the move and my Haem wants me to consider hydroxycarbamide

Any tips on injecting interferon (Pegasys)?

In support group for my Contributory ESA benefit. I have ET, symptoms mild but include fatigue and mood swings. Should I be?

Is agent orange and the dioxin from AO (TCDD) a potential cause of my MPD,essential Thombocytosis.

Burning legs and feet at night early hours

Did anyone feel tipsy when they first started taking HU?

Ruxolitinib as a treatment for Myelofibrosis (MF) – NICE draft guidance - UPDATE

Veins in hiding

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