Posts - MPN Voice | HealthUnlocked

MPN Voice

10,430 members • 14,370 posts

All posts for November 2018

Follow up

Hi, I had my second monthly test with Hydro 500 daily (except weekends this month), and platelets went up from 281 to 520! So not so good idea to change the...

Hi, I had my second monthly test with Hydro 500 daily (except weekends this mont...

Kelly2

•5 years ago

5 Replies

AML patients in Australia today learn midostaurin (Rydapt®) will be available under new PBS listing. Press Release below.

Media Release For media queries, please contact media@leukaemia.org.au New PBS listing vital to Australians living with Acute Myeloid Leukaemia (AML) Leukaemia...

Media Release For media queries, please contact media@leukaemia.org.au New PBS l...

Hidden

•5 years ago

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Alternative medication

I recently wrote about the side effects I am having to Hydroxycarbamide and had numerous replies stating they were experiencing the same symptoms fatigue...

I recently wrote about the side effects I am having to Hydroxycarbamide and had ...

Heather270240

•5 years ago

9 Replies

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Daily Smokers Have a More than 3 Times Increased Risk for MPN

Daily Smokers Have a More than 3 Times Increased Risk for MPN NOVEMBER 28, 2018 Einav Keet The results of a new study conducted by investigators in Denmark...

Daily Smokers Have a More than 3 Times Increased Risk for MPN NOVEMBER 28, 2018 ...

shiftzz

•5 years ago

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Still shaking my head

This is a long post so please be patient. I had not been feeling good for a couple of weeks, i.e. much tireder than usual, slurry speech, stumbling and short...

This is a long post so please be patient. I had not been feeling good for a coup...

jillydabrat

•5 years ago

19 Replies

Want your opinons or experiences

My megaspleenomegaly has not increased in my opinion but was lately measured at 35cm. Recently started taking fexofenadine for itching which had become a lot...

My megaspleenomegaly has not increased in my opinion but was lately measured at ...

skodaguy

•5 years ago

3 Replies

ET and iron intake and supplements

Since being diagnosed with ET JAK2+ in November 2016 and 9x500mg Hydrea weekly, I have never been given any information on either taking iron supplements or...

Since being diagnosed with ET JAK2+ in November 2016 and 9x500mg Hydrea weekly, ...

Searcher56

•5 years ago

10 Replies

PV diet and excercise in addition to hydroxycarbamide

I had my bloods checked yesterday and my platelets have increased dramatically over the last few months. I was told by my haematologist that I would have to...

I had my bloods checked yesterday and my platelets have increased dramatically o...

Hughley

•5 years ago

14 Replies

Update from a PV Newbie

I had my follow-up visit with my hematologist on 10/31 when he confirmed my diagnosis of PV. I had been getting 3 venesections per week since my first visit...

I had my follow-up visit with my hematologist on 10/31 when he confirmed my diag...

JP2018

•5 years ago

9 Replies

Cold without fever.

Hi I am on Hydroxyurea 500mg a day and have a cold for some days runny nose and eyes and some chest pain when coughing (not often). What antibiotics are we...

Hi I am on Hydroxyurea 500mg a day and have a cold for some days runny nose and ...

Kelly2

•5 years ago

18 Replies

Does anybody take very low dose of Hydrea?

Hi all, so suddenly my counts are more normal, after taking 500mg daily of Hydrea for a little more than a year. The doctor suggested to try 500mg every other...

Hi all, so suddenly my counts are more normal, after taking 500mg daily of Hydre...

love0826

•5 years ago

22 Replies

Short term memory

Hi, I am 40, I have PV and was diagnosed 7 years ago, I take aspirin and have venesections no other treatment. Recently I have become increasingly concerned...

Hi, I am 40, I have PV and was diagnosed 7 years ago, I take aspirin and have v...

Foss33

•5 years ago

10 Replies

Nothing to do with an mpn but hope it makes you laugh on a grey old day.

Really, how much longer do we have to put up with time wasting cold callers on the phone? I’ve just had a call which made me hurtle down the stairs ( was...

Really, how much longer do we have to put up with time wasting cold callers on t...

Loubprv

Volunteer•5 years ago

17 Replies

Pain Relief

Had a few days of real bad bone pain, it’s keeping me awake and driving me nuts, what pain meds are people on. The doctor gave me CoDydramol but won’t...

Had a few days of real bad bone pain, it’s keeping me awake and driving me nuts,...

Raphael_UK

•5 years ago

11 Replies

Shingles vaccine update

Hi folks, and thanks for your responses. I called my haematology department today and they advised that it is ok for my wife to have the zostavax shingles...

Hi folks, and thanks for your responses. I called my haematology department toda...

Ovingite

•5 years ago

4 Replies

Flight socks

Hi Guys I am due to fly to Boston in a couple of weeks from Dublin. I follow all the usual recommendations for travel but up to now have used flight socks from...

Hi Guys I am due to fly to Boston in a couple of weeks from Dublin. I follow all...

Margo18

•5 years ago

8 Replies

Blood clots!

Just cut my leg & it was bleeding, running down my leg, next thing I have an actual soft clot of blood on my leg, definitely sticky blood! Right in front of...

Just cut my leg & it was bleeding, running down my leg, next thing I have an ac...

Melaniem59

•5 years ago

4 Replies

Hydroxy and shingles vaccination

My wife went for a flu & shingles jab today but was advised by the nurse not to have the shingles vaccination because it is a live virus and could affect me as...

My wife went for a flu & shingles jab today but was advised by the nurse not to ...

Ovingite

•5 years ago

11 Replies

Low mood

I wonder how many of our MPN family experience low mood. I have ET and CFS and have had a UTI for 2 years which has finally been dealt with. The infection...

I wonder how many of our MPN family experience low mood. I have ET and CFS and ...

Garden987

•5 years ago

9 Replies

Mouth/Tongue Ulcers

I have PV JAK2+ dx three & a half years. Been on Hydroxycarbamide for a year & a half - 2 x 500mg daily. Since August, every three/four weeks I’ve been getting...

I have PV JAK2+ dx three & a half years. Been on Hydroxycarbamide for a year & a...

Albt4z

•5 years ago

10 Replies

TENS machines.

Hi everyone. As a PV patient on Rivaroxaban, Hydroxycarbamide and Amlodipine, I know we’re not allowed ibruprofen. Does anyone have experience with or know...

Hi everyone. As a PV patient on Rivaroxaban, Hydroxycarbamide and Amlodipine, ...

Sallush

•5 years ago

3 Replies

Fingers sore...PV or arthritis?

Both of my middle fingers at the first joint are starting to turn out. It is painful, red, and getting worse. This started shortly after being diagnose 18...

Both of my middle fingers at the first joint are starting to turn out. It is pai...

Alex9621

•5 years ago

13 Replies

update New Beginnings

well evening all from Spain.. New Beginnings .. its been a quicl 14month since moved to Spain with my new lady. started a printing and embroidery company 7...

well evening all from Spain.. New Beginnings .. its been a quicl 14month since m...

Hughesf

•5 years ago

10 Replies

London Forum 23 November

I attended the London Forum last Friday on 23 November 2018 and I found it very warm and friendly. Thanks to all organisers and participants.

I attended the London Forum last Friday on 23 November 2018 and I found it very ...

Searcher56

•5 years ago

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Nose bleeds.

Hi everyone. I’m PRV jac2pos. On Hydroxycarbamide and aspirin for last 15years, venesection about 4 per year. Last three nights awakened with very severe...

Hi everyone. I’m PRV jac2pos. On Hydroxycarbamide and aspirin for last 15years,...

Mysi

•5 years ago

7 Replies

Blood donating/ Venesection

I have two questions which I've been pondering about recently : 1. I've been donating blood for most of my grown up life, but stopped some 5 years ago. I have...

I have two questions which I've been pondering about recently : 1. I've been do...

yarrowleaf

•5 years ago

16 Replies

Melanie66

hi melanie i would gave hydroxycarbamide a go yes you feel a bit nausea to start with but you can get a drug called domperidone which cures it i have been on...

hi melanie i would gave hydroxycarbamide a go yes you feel a bit nausea to start...

Scottishterrier

•5 years ago

1 Reply

Advice

Hello , I was diagnosed earlier this year .... ET...I am being asked to take Hydra carbo but I have declined .... now am considering interferon ... Still...

Hello , I was diagnosed earlier this year .... ET...I am being asked to take Hy...

Melanie66

•5 years ago

7 Replies

Injecting Pegasys- Air Bubbles

You know when you inject Pegasys, I was told to make sure there was no air bubbles in the liquid, but the nurse said it was ok that there was a bit of air at...

You know when you inject Pegasys, I was told to make sure there was no air bubbl...

Raphael_UK

•5 years ago

5 Replies

London Forum Follow Up

Didn’t get 100% success at last night’s London forum although to be fair my Where’s Wally shirt was hidden under my coat for some of the time and I do look...

Didn’t get 100% success at last night’s London forum although to be fair my Wher...

MFBMT2011

•5 years ago

18 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2018

Follow up

AML patients in Australia today learn midostaurin (Rydapt®) will be available under new PBS listing. Press Release below.

Alternative medication

Daily Smokers Have a More than 3 Times Increased Risk for MPN

Still shaking my head

Want your opinons or experiences

ET and iron intake and supplements

PV diet and excercise in addition to hydroxycarbamide

Update from a PV Newbie

Cold without fever.

Does anybody take very low dose of Hydrea?

Short term memory

Nothing to do with an mpn but hope it makes you laugh on a grey old day.

Pain Relief

Shingles vaccine update

Flight socks

Blood clots!

Hydroxy and shingles vaccination

Low mood

Mouth/Tongue Ulcers

TENS machines.

Fingers sore...PV or arthritis?

update New Beginnings

London Forum 23 November

Nose bleeds.

Blood donating/ Venesection

Melanie66

Advice

Injecting Pegasys- Air Bubbles

London Forum Follow Up

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