Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for June 2014

A plea from our Communications Manager

As we are planning to upgrade our website, adding new sections and more content, we need your help please. Our real stories section on the website is very...

As we are planning to upgrade our website, adding new sections and more content,...

Mazcd

Partner•11 years ago

11 Replies

Anagrelide

How many of you take Anagrelide, I do 8 a day, I'm 43 have ET since 2012, I hear so many stories about this drug it's very worrying, hydrea made me severely...

How many of you take Anagrelide, I do 8 a day, I'm 43 have ET since 2012, I hear...

Purplelisa

•11 years ago

10 Replies

Manchester forum

Was brill at the forum today met great people Maz is lovely, she was just how I pictured her so helpful, bubbly and kind hearted thanks Maz xxxxx

Was brill at the forum today met great people Maz is lovely, she was just how I ...

Purplelisa

•11 years ago

16 Replies

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Another clot??

So I was woken up at about 1am with the horrible pain in my leg at the back of my right knee. I couldn't move my leg and the pain felt like it was a pumping...

So I was woken up at about 1am with the horrible pain in my leg at the back of m...

Chelle_

•11 years ago

8 Replies

Herbalife

Guys, I am looking at starting herbalife, just as a control factor more than anything. I shall speak to my Clinical Nurse first, although in the interim stages...

Guys, I am looking at starting herbalife, just as a control factor more than any...

Chelle_

•11 years ago

7 Replies

I was told I had ET in April 2013 after a bmb and there had been a mistake and my results were given to the other patient and mine to them.

My question is on the accuracy of a bmb in diagnosing an mpn. I don't know if I am questioning this because of the mistake with the mislabelling after being...

My question is on the accuracy of a bmb in diagnosing an mpn. I don't know if I ...

avondale2009

•11 years ago

24 Replies

I wish I was able to go to the Manchester forum on Saturday .we are able to learn so much from each other ,if you do go have a great day !!

I have attended the forums in London and around the Essex area ,over the last 2 years, they have taught me so much , Talking to others who have my same...

I have attended the forums in London and around the Essex area ,over the last 2 ...

Twinkly

•11 years ago

3 Replies

From a concerned and worried mum.

I have a wonderful daughter with ET. She suffers with the overwhelming tiredness and itching skin which is worse after just having had a bath or shower. She...

I have a wonderful daughter with ET. She suffers with the overwhelming tiredness...

mums2worry

•11 years ago

16 Replies

Diagnosed with erythrocytosis, jak2+, is this pv?

This is my first post here and I am very happy to have found this community. I'm a 34 year old male who needs to quit smoking... I was recently told that I...

This is my first post here and I am very happy to have found this community. I'm...

TimVA

•11 years ago

2 Replies

Hydroxycarbamide or Ruxolitinib am I right in thinking HU helps platelet levels but Ruxolitinib actually prevents fibrosis of bone marrow ?

HU or Rixolitinib ? am I right in thinking HU helps platelet levels but Ruxolitinib actually prevents or at least slows fibrosis of bone marrow ? Therefore if...

HU or Rixolitinib ? am I right in thinking HU helps platelet levels but Ruxolit...

Armanimick

•11 years ago

4 Replies

1000mg Hydroxy in one dose or 500 a.m. & p.m?

Hello again all you lovely MPDers out there...just a quick enquiry for all those on 1000 mg dose of Hydroxy daily. Do you split it into morning & evening...

Hello again all you lovely MPDers out there...just a quick enquiry for all those...

Hidden

•11 years ago

11 Replies

Today I posted my answers ,to the question are about the drug ruxolitinib .I hope this goes some way to help make this drug more available .

Iv been lucky in that I was invited to take part in the Majic trial .I agreed and after testing ,I was given the drug on the NHS. I'm treated at Cambridge...

Iv been lucky in that I was invited to take part in the Majic trial .I agreed an...

Twinkly

•11 years ago

1 Reply

coffee morning

If anybody lives near Finedon in Northamptonshire we have a coffee morning on Saturday 26th July at Finedon bowls club from 10.00 - Noon come and have a chat...

If anybody lives near Finedon in Northamptonshire we have a coffee morning on Sa...

tinaj

•11 years ago

8 Replies

Ruxolitinib - patient & family/carer questionnaires

We need your help and feedback to support an application to the Scottish Medicines Consortium (SMC) for the prescribing of Ruxolitinib (Jakavi) to patients...

We need your help and feedback to support an application to the Scottish Medicin...

Mazcd

Partner•11 years ago

6 Replies

Hi. I have recently been diagnosed with polycythaemia. My gp is quite confident that it is secondary, is it still okay for me to post here?

daisy82

•11 years ago

3 Replies

HAEM KNEW BEST!

Well I have some of the results of my bmb and my haemetologist was right in her assumption - I am in the early stages of MF it appears. So goodbye Polly and...

Well I have some of the results of my bmb and my haemetologist was right in her ...

linds

•11 years ago

4 Replies

Finally....

Finally manged to crack a run......hips hurt, knees hurt, throat is killing.....coughing like I smoked 60 fags....loved it!! 11weeks and counting for the Great...

Finally manged to crack a run......hips hurt, knees hurt, throat is killing........

Chelle_

•11 years ago

8 Replies

I have been taking PEGASYS by injection in the arm ~10 days after injection I get an itchy rash at injection site - how to relieve the itch?

PEGASYS 135 millig every 2weeks; I change injection site (left arm then right...). Have been taking Pegasys for 3 months. Diagnosed with MF.

PEGASYS 135 millig every 2weeks; I change injection site (left arm then right......

crapaud

•11 years ago

10 Replies

Thanks to all of you!

Some weeks ago I posted how scared I was about having a bone marrow biopsy and asked for support - you came in your tens to encourage me. This is to say...

Some weeks ago I posted how scared I was about having a bone marrow biopsy and a...

linds

•11 years ago

8 Replies

Pain symptomatic of Gout in foot for last 10 days, given Naproxen, completed dose but pain worse than ever, have ET, I'm on HU and aspirin.

Working in Khazakstan, health care difficult, what can I safely take to ease pain?

Working in Khazakstan, health care difficult, what can I safely take to ease pai...

Flaxy

•11 years ago

3 Replies

Are there many of you that have an enlarged spleen that have either PV or ET ? I am worried that I do but many others don't appear to

Karen1970

•11 years ago

15 Replies

LADIES, contraception & PV

Ladies, What contraception have you found works for you? I have PV, along with PVT & Liver Cirrhosis, I am currently on Warfarin and Hyroxy. I want to get...

Ladies, What contraception have you found works for you? I have PV, along with P...

Chelle_

•11 years ago

2 Replies

Here I go again ! Has anyone read .The China Study. It's by T Colin Campbell.PHD. It's amazing .he is convinced diet can cure heart & cancer

I was sent this book by a friend who has beat cancer ,with treatment and diet ,,He has a. son and another on the way ! The doctors are amazed by his...

I was sent this book by a friend who has beat cancer ,with treatment and diet ,,...

Twinkly

•11 years ago

3 Replies

Southampton Forum

Just wanted to say a massive thank you to the guys who set up the forum at Southampton Hospital on Friday. Although there was a lot of information to take in;...

Just wanted to say a massive thank you to the guys who set up the forum at South...

Chelle_

•11 years ago

4 Replies

How to present information to Dr. Mesa on patient who successfiully treated their E.T. condition with an alternative,without any medication,

The patient was successfull , and was monitored by their doctor over a span of time. My thinking is maybe some of the scienistst in this field might be...

The patient was successfull , and was monitored by their doctor over a span of t...

Hidden

•11 years ago

13 Replies

Back pain and hydroxy

Hello All, I'm now 42 and have ET and been on hydroxy since diagnoses about 5 years ago, I have always suffered from intermittent back problems after a mortar...

Hello All, I'm now 42 and have ET and been on hydroxy since diagnoses about 5 y...

stevenjust

•11 years ago

13 Replies

Update on the Majic trial . I'm taking the drug ruxolitinib .10 months ,ultrasound to check my liver and spleen was excellent x blood counts

When you consider I was needing venesection every 4 weeks ,when I was taking hydra Plus all those side effects I read about on this site ,flushes and painful...

When you consider I was needing venesection every 4 weeks ,when I was taking hyd...

Twinkly

•11 years ago

2 Replies

Cancer Research UK - Information regarding MPN's

Hi All I may be passing on something that you all already know about - but just in case thought I would post a link for people to check out. In particular,...

Hi All I may be passing on something that you all already know about - but just...

amarylis

•11 years ago

12 Replies

Medication Changed

Medication has changed today from Inter-A to Hydrox.....platelets and HB both dropped on Inter-A....not sure how I am feeling. Get my emotions in check and...

Medication has changed today from Inter-A to Hydrox.....platelets and HB both dr...

Chelle_

•11 years ago

10 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2014

A plea from our Communications Manager

Anagrelide

Manchester forum

Another clot??

Herbalife

I was told I had ET in April 2013 after a bmb and there had been a mistake and my results were given to the other patient and mine to them.

I wish I was able to go to the Manchester forum on Saturday .we are able to learn so much from each other ,if you do go have a great day !!

From a concerned and worried mum.

Diagnosed with erythrocytosis, jak2+, is this pv?

Hydroxycarbamide or Ruxolitinib am I right in thinking HU helps platelet levels but Ruxolitinib actually prevents fibrosis of bone marrow ?

1000mg Hydroxy in one dose or 500 a.m. & p.m?

Today I posted my answers ,to the question are about the drug ruxolitinib .I hope this goes some way to help make this drug more available .

coffee morning

Ruxolitinib - patient & family/carer questionnaires

Hi. I have recently been diagnosed with polycythaemia. My gp is quite confident that it is secondary, is it still okay for me to post here?

HAEM KNEW BEST!

Finally....

I have been taking PEGASYS by injection in the arm ~10 days after injection I get an itchy rash at injection site - how to relieve the itch?

Thanks to all of you!

Pain symptomatic of Gout in foot for last 10 days, given Naproxen, completed dose but pain worse than ever, have ET, I'm on HU and aspirin.

Are there many of you that have an enlarged spleen that have either PV or ET ? I am worried that I do but many others don't appear to

LADIES, contraception & PV

Here I go again ! Has anyone read .The China Study. It's by T Colin Campbell.PHD. It's amazing .he is convinced diet can cure heart & cancer

Southampton Forum

How to present information to Dr. Mesa on patient who successfiully treated their E.T. condition with an alternative,without any medication,

Back pain and hydroxy

Update on the Majic trial . I'm taking the drug ruxolitinib .10 months ,ultrasound to check my liver and spleen was excellent x blood counts

Cancer Research UK - Information regarding MPN's

Medication Changed

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