Posts - MPN Voice | HealthUnlocked

MPN Voice

10,438 members • 14,387 posts

All posts for May 2019

Red blotches Legs with ET

Hello everyone. Anybody have a problem with red blotches on legs? I’m in Hydroxy and as soon as the weather gets warmer I experience patches/blotches in my...

Hello everyone. Anybody have a problem with red blotches on legs? I’m in Hydroxy...

Spirit123

•5 years ago

8 Replies

Diet for ET sufferers

Hi, I posted yesterday,asking if anyone could recommend what diet one should follow when suffering from ET JAK2+ but the post seems to have gone astray. Just...

Hi, I posted yesterday,asking if anyone could recommend what diet one should fol...

azaelea

•5 years ago

30 Replies

Blurry eyes

Hi all.... has anyone experienced blurry eyes with E/T? At random times my eyes feel like they go blurry and I have to rub them or close my eyes.

Hi all.... has anyone experienced blurry eyes with E/T? At random times my eyes ...

Dazakella2010

•5 years ago

33 Replies

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Pegasys 180 injection reaction

Morning all, So I've been off of Hydrea for a few months now and on Pegasys 180 for 4 weeks. Used 2x quater and 2x half dosage so far. I've been feeling...

Morning all, So I've been off of Hydrea for a few months now and on Pegasys 18...

Chris_H

•5 years ago

19 Replies

Vaccines

Could I get some feedback on Vaccines that were recommended to me by a general practitioner? Recommended were Pneumovax 23, influenza, Tdap, Shingles( not a...

Could I get some feedback on Vaccines that were recommended to me by a general p...

pvgirl

•5 years ago

3 Replies

Platelets at a million

Went to my mpn doctor on Monday platelets were at a million even while taking hydroxy 😟so she upped my dose to 4 times a day anyone have any side effects?

Went to my mpn doctor on Monday platelets were at a million even while taking hy...

faith949

•5 years ago

8 Replies

ANEMIA WITH HYDROXY

Greetings, all. I’m just wondering what, if anything, can be done when the red and white blood cells are killed, off. I’ve done well during my 8 months of HU,...

Greetings, all. I’m just wondering what, if anything, can be done when the red a...

BluePeony

•5 years ago

8 Replies

How can I change how I receive postings

change settings to weekly instead of indivial posts. How do I do it? Thanks

crapaud

•5 years ago

1 Reply

Just popping By to say Hello x

How’s everyone keeping Sorry I’ve neglected you all Nana Duty’s are very time consuming But as I’ve always said The best Medicine going 💗💙 Carter’s 3...

How’s everyone keeping Sorry I’ve neglected you all Nana Duty’s are very time ...

Phelpsy

•5 years ago

9 Replies

‘Sharps’ Bin

Hi , Sorry to ask such a trivial question, but I was given a sharps bin when I started Interferon a couple of months ago, but not told exactly what to put in...

Hi , Sorry to ask such a trivial question, but I was given a sharps bin when I s...

swimswam

•5 years ago

5 Replies

Weight

Hi back at consultant today has anyone had issues with weight loss and feeling full and bloated even though your hungry and not eaten much??

Hi back at consultant today has anyone had issues with weight loss and feeling f...

Sambo1978

•5 years ago

3 Replies

Bone marrow biopsy negative for PV & JAK2 NEG

So with jak2 neg & BMB negative should I get another Bone marrow biopsy? I feel great but blood cbc has my hematocrit at 58 and my hemoglobin 20.6 Its been...

So with jak2 neg & BMB negative should I get another Bone marrow biopsy? I feel...

Notlikecandy

•5 years ago

4 Replies

What is the rate for someone with ET to progress to myelofibrosis?

I have slight increase in platelets and mild splenomegaly. My hematologist gave me 15% rate for progression to ET. Does anyone else has a percentage given from...

I have slight increase in platelets and mild splenomegaly. My hematologist gave ...

Aneliv9

•5 years ago

16 Replies

Dr. removed hydrea and placed on baby aspirin only

Have E.T. for the past 11 yrs. On Hydrea and counts fluturate up and down,l Counts hoover between 500-650 and Hyrdrea regulated to usally 500mg twice a day....

Have E.T. for the past 11 yrs. On Hydrea and counts fluturate up and down,l Coun...

Hidden

•5 years ago

8 Replies

Symptom tracker

Hi all. Hope you’ve had a good day. Doctor has suggested I write down my symptoms by the minute eg how long they last. Can anyone recommend a symptoms tracker...

Hi all. Hope you’ve had a good day. Doctor has suggested I write down my symptom...

Jlah

•5 years ago

4 Replies

recurrent infections

Hi was just wondering if anyone had any advice - I have for the last 2 years have had recurrent chest/ear infections always needs treatment with antibiotics....

Hi was just wondering if anyone had any advice - I have for the last 2 years hav...

cheeks1

•5 years ago

18 Replies

Is it normal for someone with ET to have blasts percentage 1%-2% in the bone marrow?

Is it normal for someone with ET to have blasts percentage 1%-2% in the bone mar...

Aneliv9

•5 years ago

13 Replies

Foot infection

Have had a foot infection for over 3 weeks have had 4 different types of antibiotics none of them seem to be working. I have ET on aspirin and hydroxybooked...

Have had a foot infection for over 3 weeks have had 4 different types of antibio...

Benjamin12

•5 years ago

6 Replies

What "JAK2 heterozygous" means? Is JAK2 the same as JAKv617?

Aneliv9

•5 years ago

3 Replies

Gloomy spells

Is it normal to get gloomy spells and depression? How to cope up with this helplessness.

Is it normal to get gloomy spells and depression? How to cope up with this helpl...

DamnYouEt

•5 years ago

21 Replies

Weight loss

Is weight loss common with ET? I realised I was losing weight last year before I was diagnosed, it was gradual not alarming but my clothes seemed to be a bit...

Is weight loss common with ET? I realised I was losing weight last year before I...

Andra13

•5 years ago

14 Replies

ET with JakV176 "possitive" 3 years after beeing JakV167 "negative"?

Is it possible for someone to be JakV167 possitive, 3 years after initial mutation test was: JakV167 negative?

Is it possible for someone to be JakV167 possitive, 3 years after initial mutat...

Aneliv9

•5 years ago

3 Replies

What does a bone marrow biopsy result show for ET?

Hi There- I have been diagnosed with ET and had a BMB to help confirm it. My Heam said yes it is this, based upon exclusionary factors. Not sure if the BMP...

Hi There- I have been diagnosed with ET and had a BMB to help confirm it. My He...

Jschwab

•5 years ago

27 Replies

One Year On

Well, it's a Year to the day that I received my ET Jak2+ diagnosis. I can still feel the, "is this really happening to me?" question in my head as I walked out...

Well, it's a Year to the day that I received my ET Jak2+ diagnosis. I can still ...

Lemon123

•5 years ago

10 Replies

Vitamin c and fibrosis

Can anyone offer incite as to whether vitamin c promotes fibrosis via collagen development from vitamin c? It has so many other benefits in haematological...

Can anyone offer incite as to whether vitamin c promotes fibrosis via collagen d...

fee13

•5 years ago

7 Replies

Updown Blood counts

Hello Everyone, Recently i have experience updown blood counts,i had continued to drop down in blood counts after four months of phlebotomy but CBC results up...

Hello Everyone, Recently i have experience updown blood counts,i had continued t...

Vigiindia

•5 years ago

10 Replies

Travelling with Pegasys

Hi everyone I've just started on Pegasys. I'm thinking ahead to holidays abroad and I've seen mention on here of people having travel pouches or something...

Hi everyone I've just started on Pegasys. I'm thinking ahead to holidays abroad...

hall2

•5 years ago

11 Replies

HU Journey

Well after doing well on 500mg of HU.ive had a bit of a bump today my platelets have risen slightly from 1089 to 1112.. still lower than they where in February...

Well after doing well on 500mg of HU.ive had a bit of a bump today my platelets ...

heathermc

•5 years ago

4 Replies

Hydroxy

I’ve had ETfor four years. Been on hydroxy and aspirin. This week after having to increase dose due to elevated platelets I’ve had itchy patch on leg where I...

I’ve had ETfor four years. Been on hydroxy and aspirin. This week after having...

Spirit123

•5 years ago

7 Replies

Polycythemia without any symptoms

I was diagnosed with Polycythemia last December positive for Exon 12 genetic mutation. I have not experienced any symptoms at all, either before or after...

I was diagnosed with Polycythemia last December positive for Exon 12 genetic mut...

cythemia

•5 years ago

6 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2019

Red blotches Legs with ET

Diet for ET sufferers

Blurry eyes

Pegasys 180 injection reaction

Vaccines

Platelets at a million

ANEMIA WITH HYDROXY

How can I change how I receive postings

Just popping By to say Hello x

‘Sharps’ Bin

Weight

Bone marrow biopsy negative for PV & JAK2 NEG

What is the rate for someone with ET to progress to myelofibrosis?

Dr. removed hydrea and placed on baby aspirin only

Symptom tracker

recurrent infections

Is it normal for someone with ET to have blasts percentage 1%-2% in the bone marrow?

Foot infection

What "JAK2 heterozygous" means? Is JAK2 the same as JAKv617?

Gloomy spells

Weight loss

ET with JakV176 "possitive" 3 years after beeing JakV167 "negative"?

What does a bone marrow biopsy result show for ET?

One Year On

Vitamin c and fibrosis

Updown Blood counts

Travelling with Pegasys

HU Journey

Hydroxy

Polycythemia without any symptoms

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