Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for August 2013

CANCELLATION OF COLCHESTER PATIENTS' FORUM

I regret to inform you that the Colchester patients' forum has been cancelled. I would like to apologize if this causes any of you any inconvenience, it is...

I regret to inform you that the Colchester patients' forum has been cancelled. ...

Partner•11 years ago

Very interesting lecture by Dr Teferi

This you tube footage is from a talk by Dr Teferi on the basic approach to the treatment of PV and ET. The English speaking part begins after about 20......

This you tube footage is from a talk by Dr Teferi on the basic approach to the t...

•11 years ago

Can anyone tell me if it is safe to take a decongestant such as Sudafed.

I suffer with chronic phlegm at the back of my throat which I cannot easily cough up or clear. I used to use Sudafed pretty regularly which I am reluctant to...

I suffer with chronic phlegm at the back of my throat which I cannot easily coug...

•11 years ago

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ET & interferon

My partner has ET & it's being discussed by the docs that his treatment needs to be changed to interferon. Yet there seems a delay - we get the impression this...

My partner has ET & it's being discussed by the docs that his treatment needs to...

sheffieldvisitor

•11 years ago

I've got ET and been on hydroxycarbamide for 6 wks 1.5 g, I've got severe athletes foot and vaginal thrush. Is this common and any tips?

•11 years ago

After diagnoses of PV/ET, how long did it take for blood counts to stabilize?

Diagnosed around 11 months ago, currently on daily Aspirin and Interferon Alpha 4 times a week. My consultant has confirmed my counts are slow to stabilize...

Diagnosed around 11 months ago, currently on daily Aspirin and Interferon Alpha ...

•11 years ago

I'm a40yr old female with ET. platelet count are at 900 now. suggestions for relaxation and stress reducers? count has been up and down.

•11 years ago

Low PH level?

Hi just been for bloods and told my ph level has gone low and the blood is clumping, they have repeated the bloods and going to look further just in case it's...

Hi just been for bloods and told my ph level has gone low and the blood is clump...

•11 years ago

Ruxolitinib (Jakavi) change to packaging

Novartis Pharmaceuticals UK Limited have informed MPD Voice that as of Friday 16th August 2013, Jakavi (Ruxolitinib) tablets will be packaged in blister packs,...

Novartis Pharmaceuticals UK Limited have informed MPD Voice that as of Friday 16...

Partner•11 years ago

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Can anyone recommend an anti histamine that actually work for itching?

I have tried lots of different makes but haven't hit on the right one yet. Thanks.

I have tried lots of different makes but haven't hit on the right one yet. Thank...

•11 years ago

I have PV and get fairly regular bruising especially on my arms and legs. Do others of you get this and do you know why

•11 years ago

Do symptoms get worse? I was originally diagnosed with PV early last year but...

After having tests for JAK2 and EXON12 mutations (both negative) and a diagnosis of Secondary Erythrocytosis ruled out through extensive testing, I was...

After having tests for JAK2 and EXON12 mutations (both negative) and a diagnosis...

•11 years ago

Excessive sweating

Hello all. We have just returned from a 10 day holiday to Menorca where it was very hot. Before we went hubby had a red count of 49 and they tried to bring...

Hello all. We have just returned from a 10 day holiday to Menorca where it was ...

•11 years ago

Ruxolitinib Relief Trial .

Hi all , just to let you know I started on the trial last Thursday ( 8-8-13 ) and so far have felt no better . But its early days and won't know for sixteen...

Hi all , just to let you know I started on the trial last Thursday ( 8-8-13 ) an...

maestromaverick

•11 years ago

my legs ache and my feet seem to be constantly swollen even when I get up in the morning. Today I am also having an episode of vertigo.

Does anyone else get this?

Does anyone else get this?

•11 years ago

Flying and PV

Hi, has anyone had any advice from their haem about flying (short haul about 5 hours) with PV. I am going away at the end of September and will ask my haem...

Hi, has anyone had any advice from their haem about flying (short haul about 5 h...

•11 years ago

Hi, has anybody with PV have experience of applying for Attendance Allowance (DLA for the under 65s)?

I'm about to try...I'm really suffering now with PV & Spondylosis & wondered if there any pitfalls with the application I should be aware of?

I'm about to try...I'm really suffering now with PV & Spondylosis & wondered if ...

•11 years ago

Bone pain with secondary polycythaemia

Hi, does anyone else with polycythaemia get pains in their thighs.. it feels like someone is pressing a blunt hard edge on my bones, when standing im a bit...

Hi, does anyone else with polycythaemia get pains in their thighs.. it feels lik...

Geoff_mpnfamily

•11 years ago

PV, treated by venesection and anti-histamines only. Does anyone else suffer from the shakes - could be low blood sugar?

I do eat regular meals but quite often by 4.00 p.m., I feel really weak and limbs shakey. Just wondered if this was related to the PV or something else as I...

I do eat regular meals but quite often by 4.00 p.m., I feel really weak and limb...

•11 years ago

Ankle ache

I have Polycythaemia Vera, being treated by venesection plus allopurinol to treat high uric acid. My feet are aching a lot, below my inner ankles, occasionally...

I have Polycythaemia Vera, being treated by venesection plus allopurinol to trea...

•11 years ago

Interferon negative side effects personal research

Hi, I was wondering if anyone received any kind of treatment with Interferon lika INTRON A, Roferon A, Peginterferon, Pegasys....and so on? I was on INTRON...

Hi, I was wondering if anyone received any kind of treatment with Interferon l...

•11 years ago

Newbie

I am currently being tested for possible Polycythemia. I have had raised Hct and Hb etc and have 4 venesections and am on 75mg daily asprin, I have been...

I am currently being tested for possible Polycythemia. I have had raised Hct an...

•11 years ago