Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for August 2019

Whats in a Dx?

Hi Everybody, Just a question...supposedly my Dx is ET, however, my platelets are well within in normal limits and have been within normal limits for a while,...

Hi Everybody, Just a question...supposedly my Dx is ET, however, my platelets ar...

Uzza

•5 years ago

11 Replies

ET and the sun

I have ET jak2 + currently only on aspirin. I've read there is a risk going in the sun? Is this related to the condition or the medication such as hydroxy? I'm...

I have ET jak2 + currently only on aspirin. I've read there is a risk going in t...

Camelian

•5 years ago

9 Replies

Itching during the night

Hi everyone, I have PV and have recently been experiencing extremely itchy skin during the night. Normally it’s the palms of my hands but I’ve also had it on...

Hi everyone, I have PV and have recently been experiencing extremely itchy skin ...

Spam1979

•5 years ago

16 Replies

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Burning finger tips

Hi sorry to bother everyone again but does anyone else get burning finger tips? My dose of Pegasys was increased in the week which is probably responsible,...

Hi sorry to bother everyone again but does anyone else get burning finger tips? ...

Charlieapple2018

•5 years ago

22 Replies

My new best friend

Hi all. Introducing Bertie. He’s given me a new purpose to life since ‘early retirement’ and battling this condition. Thanks to everyone on this forum for the...

Hi all. Introducing Bertie. He’s given me a new purpose to life since ‘early ret...

Jlah

•5 years ago

16 Replies

Pegasys - allergic reaction at injection site

I have been on Pegasys for seven weeks now (ET) and my haematologist is happy that it's starting to take effect. For the first couple of weeks it was fine,...

I have been on Pegasys for seven weeks now (ET) and my haematologist is happy th...

Otterfield

•5 years ago

9 Replies

Hydroxyurea

Hi my name is Diane and I am 69 years old. I was diagnosed with PV jak 2 positive in January. My treatment so far has been phlebotomy and daily aspirin....

Hi my name is Diane and I am 69 years old. I was diagnosed with PV jak 2 positi...

dladydi

•5 years ago

8 Replies

WHERE CAN I FIND A NEW STOOL?

Post by MPN-MATE Admin » Sat Aug 17, 2019 12:12 pm Hey guys... :-) Here is a really different way to change your usual dietary regime, well at least...

Post by MPN-MATE Admin » Sat Aug 17, 2019 12:12 pm Hey guys... :-) Here is a r...

socrates_8

•5 years ago

14 Replies

After 15 years of high platelets my platelets have suddenly dropped into normal range

I'm not sure if this is a good thing or a bad thing. Of course the reason I think it may be bad is I'm wondering if this is the beginning of myelofibrosis. The...

I'm not sure if this is a good thing or a bad thing. Of course the reason I thin...

clubdino

•5 years ago

25 Replies

Results from hematologist

Hello, all. Yesterday I had my six week check up with my hematologist. He had taken me off of hydroxyurea last time because of anemia. I was just taking Jakafi...

Hello, all. Yesterday I had my six week check up with my hematologist. He had ta...

Cja1956

•5 years ago

17 Replies

This is beautiful

For my MPN friends

Sand-Dancer

•5 years ago

26 Replies

Don't know what to think 😟

I'm not going to lie...I've had plenty of bad experiences with doctors which led me to give up on doctors and I didn't see a doctor for probably a...

I'm not going to lie...I've had plenty of bad experiences with doctors which led...

clubdino

•5 years ago

42 Replies

Worsening symptoms of myelofibrosis

Hi Can anyone tell me the worsening symptoms of myleofibrosis as I am very concerned about my partner who has post ET myelofibrosis and since diagnosis has...

Hi Can anyone tell me the worsening symptoms of myleofibrosis as I am very conce...

Goldfish212

•5 years ago

4 Replies

Hydroxycarbomide and Neutropenia

Hello there, My partner is 32 and taking 2g HU daily for ET (triple neg). It’s quite aggressive and he can’t take anagrelide as he has already had a heart...

Hello there, My partner is 32 and taking 2g HU daily for ET (triple neg). It’s q...

intothewoods

•5 years ago

11 Replies

Moaning Minnie

HI everyone. Just to say that the Hydroxy. Dose mystery has been sorted out.I take 2 500 mg for. Six days and 500 for one day. Thank you all so very much for...

HI everyone. Just to say that the Hydroxy. Dose mystery has been sorted out.I t...

Garden987

•5 years ago

10 Replies

ET, Headaches and Reflexology

Hi all, I just wanted to pass on something that has really helped me. I had been getting headaches almost daily for months. I started reflexology 7 weeks ago,...

Hi all, I just wanted to pass on something that has really helped me. I had been...

Sheila-collins

•5 years ago

5 Replies

Tinnitus-hearing Problems ET

No doctor has believed me, but now I know that a reoccurring tinnitus has to do with my ET. Proof below. I’m presently on vacation. My next step is to go to a...

No doctor has believed me, but now I know that a reoccurring tinnitus has to do ...

Anag

•5 years ago

41 Replies

Hydrea and Platelet reduction. What about the other blood cells?

Hi, just a thought....if my platelets have reduced from 730 to 287 in under 4 months, how can they tell when they will stop going down and also if the Hydrea...

Hi, just a thought....if my platelets have reduced from 730 to 287 in under 4 mo...

azaelea

•5 years ago

22 Replies

"Dry skin" and Pegasys

Many people here report that Pegasys gives them dry skin. No doubt this is often true because Pegasys has a GIGANTIC range of side-effects. But I wanted to...

Many people here report that Pegasys gives them dry skin. No doubt this is ofte...

pnArt

•5 years ago

3 Replies

Mouth ulcers

Have you tried Gelclair, made by Helsinn? Economical to buy a bottle, use 15 ml mixed with 40 m water and wash it round your mouth, then spit out. Recommended...

Have you tried Gelclair, made by Helsinn? Economical to buy a bottle, use 15 ml ...

lucieboo

•5 years ago

2 Replies

Myelofibrosis

I have stage two MF. 72 years old. Live in California. They want to put me on JAKAFI. Anybody else out there in my situation?

I have stage two MF. 72 years old. Live in California. They want to put me on...

Jerrymohler

•5 years ago

12 Replies

Moaning minnie

After reading previous posts from people with really serious problems I am embarrassed to be writing this. My platelets rose from 540 to 650 and Hydroxy....

After reading previous posts from people with really serious problems I am embar...

Garden987

•5 years ago

35 Replies

Advil and hydroxyurea

Hydroxyurea Does anyone know if it’s ok to take Advil when on hydroxyurea for an occasional headache or backache

Hydroxyurea Does anyone know if it’s ok to take Advil when on hydroxyurea for a...

Petsch

•5 years ago

9 Replies

MPN Specialists

Hi everyone, I’m based in the UK and have the wonderful NHS caring for me. My Haematologist is great and I feel well looked after. I was wondering if there...

Hi everyone, I’m based in the UK and have the wonderful NHS caring for me. My ...

Charlieapple2018

•5 years ago

27 Replies

Recently Diagnosed-ET-Does Fitness Suffer?

I have just started my annual surfing holiday and have completed my first day in the waves. I generally consider myself as fairly fit but am now lying on the...

I have just started my annual surfing holiday and have completed my first day in...

Threelions

•5 years ago

17 Replies

The connection between MPNs and inflammation

Interesting article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4619953/

clubdino

•5 years ago

7 Replies

Should I be asking for a BMB?

Hi my MPN friends I have posted before about my chronic joint pain, especially my back trouble. I was diagnosed with PV Jak2+ in 2014 but I think because of...

Hi my MPN friends I have posted before about my chronic joint pain, especially m...

jillydabrat

•5 years ago

7 Replies

Mosquito products

is it safe to use Mosquito products containing Deet if you have MPN/PV

waddles22

•5 years ago

8 Replies

Anybody here with ET and hearing impairment?

I was diagnosed with ET in my 20s but like many people here I often wonder how long I actually had the disease before I was diagnosed. I recently read an...

I was diagnosed with ET in my 20s but like many people here I often wonder how l...

clubdino

•5 years ago

18 Replies

ET JAK2 positive and refused a scan

Has anyone who has already had a TIA with high platelets ever been refused a scan. I was at A&E this morning with a suspected torn muscle in my calf. The...

Has anyone who has already had a TIA with high platelets ever been refused a sca...

Mycancerconcern1

•5 years ago

1 Reply

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2019

Whats in a Dx?

ET and the sun

Itching during the night

Burning finger tips

My new best friend

Pegasys - allergic reaction at injection site

Hydroxyurea

WHERE CAN I FIND A NEW STOOL?

After 15 years of high platelets my platelets have suddenly dropped into normal range

Results from hematologist

This is beautiful

Don't know what to think 😟

Worsening symptoms of myelofibrosis

Hydroxycarbomide and Neutropenia

Moaning Minnie

ET, Headaches and Reflexology

Tinnitus-hearing Problems ET

Hydrea and Platelet reduction. What about the other blood cells?

"Dry skin" and Pegasys

Mouth ulcers

Myelofibrosis

Moaning minnie

Advil and hydroxyurea

MPN Specialists

Recently Diagnosed-ET-Does Fitness Suffer?

The connection between MPNs and inflammation

Should I be asking for a BMB?

Mosquito products

Anybody here with ET and hearing impairment?

ET JAK2 positive and refused a scan

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