Posts - MPN Voice | HealthUnlocked

MPN Voice

10,437 members • 14,387 posts

All posts for February 2014

Polycythemia vera and urticaria

Just been diagnosed with chronic urticaria (hives). Does anyone else have it. The itching is driving me mad, but only lasts about an hour or two and then...

Just been diagnosed with chronic urticaria (hives). Does anyone else have it. ...

mark382

•10 years ago

19 Replies

Difficulty injecting Fragmin

Hello everybody, I have to inject fragmin daily and interferon 3x a week but since sunday i am struggling with the fragmin injecton. It feel like the tip of...

Hello everybody, I have to inject fragmin daily and interferon 3x a week but ...

noodles26

•10 years ago

6 Replies

Proposed patient forums in 2014

We are currently in the process of planning forums for this year to be held in various locations around the country, one proposed venue is Edinburgh and we...

We are currently in the process of planning forums for this year to be held in v...

Mazcd

Partner•10 years ago

57 Replies

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

Hi, I am due to have a Typhoid vaccination on Thursday and it occurred to me that maybe I should not go ahead with it.

I have had ET for just over a year and take aspirin and 11 Hydroxy per week. I`m holidaying in Central America and only in areas where the risk is minimal....

I have had ET for just over a year and take aspirin and 11 Hydroxy per week. I`m...

sksar

•10 years ago

2 Replies

Morning all! Well, it's month 3 of taking 2 Hydroxy per day with time off at the weekend for good behaviour!

One of the most rotten side effects is the hair thinning-I wasn't blessed with thick luscious locks to begin with so now am beginning to look like a new born...

One of the most rotten side effects is the hair thinning-I wasn't blessed with t...

Hidden

•10 years ago

8 Replies

Ruxolitinib and side effects.

Hi all . Have now been taking Ruxolitinib for four weeks and have noticed my concentration is improving , my rash has gone and the itching is not so bad . On...

Hi all . Have now been taking Ruxolitinib for four weeks and have noticed my con...

maestromaverick

•10 years ago

7 Replies

Peg Interferon - Anyone found bone structure changing?

Hi The meds we are taking affect the bone. Has anyone noticed any changes in their joints / bone structure? I am on Pegylated Inteferon and I think I am...

Hi The meds we are taking affect the bone. Has anyone noticed any changes in th...

Sherry2

•10 years ago

3 Replies

MPN Voice Fundraising Thames Pathway 14th September.

Hello everyone. Don't forget to register with Marilyn if you want to be part of the MPN Voice Team doing the 25k Thames Pathway Event 14th September. Email...

Hello everyone. Don't forget to register with Marilyn if you want to be part of ...

Hidden

•10 years ago

3 Replies

Free Eye test use before 29th March.

I typed in free eye test for my area and it came up with this voucher, but you can try typing in your area see what it comes up with. If you are like me,...

I typed in free eye test for my area and it came up with this voucher, but you c...

wendycu

•10 years ago

3 Replies

We are all looking for a magic pill from the doctor ,to take it all away ,kiss and make it better syndrome ! But in our case it can't happen

The doctor cannot make a miracle happen , but believe me ,we really can help ourselves ,take back your control ,if you do one positive thing today ,it's to...

The doctor cannot make a miracle happen , but believe me ,we really can help our...

Twinkly

•10 years ago

10 Replies

New to PV

Hello! I have been recently diagnosed with PV and have been on Interferon for a week now but I am experiencing really achey legs, it literally feels like my...

Hello! I have been recently diagnosed with PV and have been on Interferon for a ...

noodles26

•10 years ago

8 Replies

Considering changing from Hu to Interferon and need support to make right decision.

Diagnosed with ET Oct. 2011 and been on Hu ever since different dosages. I am doing well and now my dosage is reduced to 1gr. one day and rest week days 500mg....

Diagnosed with ET Oct. 2011 and been on Hu ever since different dosages. I am do...

light

•10 years ago

15 Replies

Having reacted v badly to Hu in the past, the haematologist wants to put me on Busulfan. Has anyone had similar experiences? Tinkerbell

Tinkerbell13

•10 years ago

9 Replies

Omega 7 Sea Buckthorn Oil

I read about the great benefits of this natural supplement in relation to maintaining healthy mucous membranes and it's benefit for those who have reached...

I read about the great benefits of this natural supplement in relation to mainta...

Florence1961

•10 years ago

2 Replies

Am I eating too much or is it a side effect of there Ruxo?

Folks: I work hard at staying in shape and thank God the PMF hasn't sapped my energy yet. And I have an appetite. But I burn calories. So why, after 16 months...

Folks: I work hard at staying in shape and thank God the PMF hasn't sapped my en...

andrewschorr

•10 years ago

24 Replies

Fundraising Updates from Marilyn Webster, MPN Voice Fundraising Co-Ordinator

2014 is an exciting year for MPN Voice Fundraising. We have been set the challenge to raise £100,000 to fund the Epidemiology Study and with your help we...

2014 is an exciting year for MPN Voice Fundraising. We have been set the challe...

Mazcd

Partner•10 years ago

22 Replies

Can you use a Power Plate with a MPN?

I am considering joining a gym to try and get fitter, on the application form it states you can not use the power plate if you have cancer or acute thrombosis...

I am considering joining a gym to try and get fitter, on the application form it...

ourlife

•10 years ago

6 Replies

I am interested in a buddy as well. I'm located in Alberta, but a guy located anywhere else would be fine. I've had PRV for 8 years. ABman

ABman

•10 years ago

1 Reply

Hi all my name is Don just been told I have prv and have been refused life cover anybody else had the same problem?

OHalloran

•10 years ago

6 Replies

Video with Dr. Ruben Mesa

You might find this of interest: http://www.patientpower.info/video/living-stronger-and-longer-with-mpns

You might find this of interest: http://www.patientpower.info/video/living-stron...

andrewschorr

•10 years ago

2 Replies

Introducing myself

I am an American with PMF who lives in Barcelona and has been meeting several people with MPNs in the UK and Europe. You may know that I run a website:...

I am an American with PMF who lives in Barcelona and has been meeting several pe...

andrewschorr

•10 years ago

30 Replies

Help my daughter to raise money for Leukaemia, She raised over £200 last year. Thank you for all your support. x

I'm fundraising on JustGiving for Leukaemia & Lymphoma Research, Please sponsor me. Help me raise money for this great cause by donating to my fundraising...

I'm fundraising on JustGiving for Leukaemia & Lymphoma Research, Please sponsor ...

wendycu

•10 years ago

2 Replies

Pvr, hydroxy and man flu

My husband has pvr diagnosed last summer. Is on hydroxy (4 per day) and aspirin. His counts are now all good, so much so that we are now on 3 monthly visit....

My husband has pvr diagnosed last summer. Is on hydroxy (4 per day) and aspirin...

Headinthesand

•10 years ago

7 Replies

Can anyone fill me in on anything discussed at Colchester Forum please ?

Unfortunately I was unable to attend this forum, even though it is my 'local' ! I would be interested to know if anything useful was discussed. Thanks in...

Unfortunately I was unable to attend this forum, even though it is my 'local' ! ...

rubyrubyruby

•10 years ago

6 Replies

Is anyone on Bisulfan and if so, are you having side affects? Tinkerbell

Tinkerbell13

•10 years ago

2 Replies

Lets talk about a healthy lifestyle ..we are what we eat ,I used to think "what a load of cobblers",two years ago I went green .read on ....

The difference ,changing my intake of good healthy eating ,is now being proved by my results at the clinic I attend, I stopped eating dairy ,we really don't...

The difference ,changing my intake of good healthy eating ,is now being proved b...

Twinkly

•10 years ago

12 Replies

Charity 60s Disco in aid of MPD Voice

Saturday 8 March 2014, 8 pm – 1 am in The Kennington Carvery, Ulley Road, Kennington, Ashford, Kent, TN24 9HX. Come along to this fab 60s themed disco and...

Saturday 8 March 2014, 8 pm – 1 am in The Kennington Carvery, Ulley Road, Kennin...

Mazcd

Partner•10 years ago

1 Reply

Living with MPD's Day/Forums

Hi, Will there be another Living with MPD's day this year? I notice there was a 2 yr gap between the first and second one. I was unable to attend last year....

Hi, Will there be another Living with MPD's day this year? I notice there was a...

Paul42

•10 years ago

11 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2014

Polycythemia vera and urticaria

Difficulty injecting Fragmin

Proposed patient forums in 2014

Hi, I am due to have a Typhoid vaccination on Thursday and it occurred to me that maybe I should not go ahead with it.

Morning all! Well, it's month 3 of taking 2 Hydroxy per day with time off at the weekend for good behaviour!

Ruxolitinib and side effects.

Peg Interferon - Anyone found bone structure changing?

MPN Voice Fundraising Thames Pathway 14th September.

Free Eye test use before 29th March.

We are all looking for a magic pill from the doctor ,to take it all away ,kiss and make it better syndrome ! But in our case it can't happen

New to PV

Considering changing from Hu to Interferon and need support to make right decision.

Having reacted v badly to Hu in the past, the haematologist wants to put me on Busulfan. Has anyone had similar experiences? Tinkerbell

Omega 7 Sea Buckthorn Oil

Am I eating too much or is it a side effect of there Ruxo?

Fundraising Updates from Marilyn Webster, MPN Voice Fundraising Co-Ordinator

Can you use a Power Plate with a MPN?

I am interested in a buddy as well. I'm located in Alberta, but a guy located anywhere else would be fine. I've had PRV for 8 years. ABman

Hi all my name is Don just been told I have prv and have been refused life cover anybody else had the same problem?

Video with Dr. Ruben Mesa

Introducing myself

Help my daughter to raise money for Leukaemia, She raised over £200 last year. Thank you for all your support. x

Pvr, hydroxy and man flu

Can anyone fill me in on anything discussed at Colchester Forum please ?

Is anyone on Bisulfan and if so, are you having side affects? Tinkerbell

Lets talk about a healthy lifestyle ..we are what we eat ,I used to think "what a load of cobblers",two years ago I went green .read on ....

Charity 60s Disco in aid of MPD Voice

Living with MPD's Day/Forums

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