Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for May 2020

Venesection

Hello friends, I had to go to the hospital yesterday for a venesection. I wasn’t looking forward to it but with HCT of .51 knew it was necessary. As I walked...

Hello friends, I had to go to the hospital yesterday for a venesection. I wasn’...

piggie50

•4 years ago

37 Replies

Help, I’m too anxious to listen to info re MPNs and COVID

Hi everybody, this is my first post. Would anybody be able to tell me please, following yesterday’s conference, what the guidance is for me - I’m newly...

Hi everybody, this is my first post. Would anybody be able to tell me please, fo...

Jules-y

•4 years ago

14 Replies

Do people on here work or do you claim disability allowance if taking hydroxycarbamide

Taking hydroxycarbamide and aspirin for high blood count can you claim disability allowance?

Taking hydroxycarbamide and aspirin for high blood count can you claim disabilit...

Foxylady0404

•4 years ago

37 Replies

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Thank you for webinar

Hi just been on the second live webinar was very interesting Maz please can you thank the doctors and nurses for there time it was so kind of them there’s a...

Hi just been on the second live webinar was very interesting Maz please can you ...

Poppy6060

•4 years ago

19 Replies

Am I the last person to receive a shielding text?

If I am what do I win? Started social distancing 16/03 Started shielding 23/03 Registered vulnerable online 01/04 GP practice queried why I had 23/04...

If I am what do I win? Started social distancing 16/03 Started shielding 23/03 ...

Jonnymitts

•4 years ago

47 Replies

German translation of MPN brochure?

Hi all. I have a beautiful new "boyfriend" who is keen to understand my condition. English is his second language, so I was hoping to find the basics in...

Hi all. I have a beautiful new "boyfriend" who is keen to understand my conditio...

ilovetoastwithbutter

•4 years ago

4 Replies

Interferon

I am JAK2 positive ET, 68 years old and am currently taking 1000mg hydrea and asprin, diagnosed 6 months ago. Apart from ET I am reasonably fit and healthy,...

I am JAK2 positive ET, 68 years old and am currently taking 1000mg hydrea and as...

JP1952

•4 years ago

32 Replies

Blood counts dropping

Hello there after spending 2 days in hospital and receiving unit of blood they got my hemoglobin back up to 8. Here we are 5 days later my counts have dropped...

Hello there after spending 2 days in hospital and receiving unit of blood they g...

Samiam1920

•4 years ago

6 Replies

Hydroxyurea and Zoloft

Hi everyone, Has anyone experienced using hydroxyurea with Zoloft ? Does it have any interaction? My mom is going through anxiety due to some family problems...

Hi everyone, Has anyone experienced using hydroxyurea with Zoloft ? Does it hav...

Lovelymom4

•4 years ago

6 Replies

EXERCISE INJURY & RECOVERY – (TIME IS THE THING...)

Post by MPN-MATE Admin » Thu May 21, 2020 8:39 pm Evening all... :D Felt that the topic of this Post is most relevant, well at least it should be for me......

Post by MPN-MATE Admin » Thu May 21, 2020 8:39 pm Evening all... :D Felt that...

socrates_8

•4 years ago

16 Replies

Update!

Hey guys, I wrote here a couple of months ago about some blood test results I got done where my doctor suspected PV, my Hb was at 175 and my HCT was up to 50.1...

Hey guys, I wrote here a couple of months ago about some blood test results I go...

Beerye1

•4 years ago

10 Replies

Probably unrelated...stomach pains after running?

PV, JAK2+ After running a good distance - at least 4 or 5 miles, within an hour or so after finishing I develop serious lower stomach cramps. Probably...

PV, JAK2+ After running a good distance - at least 4 or 5 miles, within an hour ...

JT_Marlin

•4 years ago

9 Replies

Update on replies Re: Erythromelalgia

I am so very grateful to you all for your informative replies. Yesterday I had a phone call to come to Haematology at hospital straight away to examine my toe....

I am so very grateful to you all for your informative replies. Yesterday I had a...

azaelea

•4 years ago

16 Replies

Low sodium

Hi everyone, apparently I have low sodium levels and my GP wants me to limit my fluid intake to under 2litrs a day, preferably 1.5 . I have issues with...

Hi everyone, apparently I have low sodium levels and my GP wants me to limit ...

Bridie123

•4 years ago

23 Replies

A 2nd Webinar for MPN patients relating to government guidance on COVID-19. Friday 22nd May 2020 – 3 pm

MPN Voice is once again, working with Leukaemia Care to share the government guidance on COVID-19 and how this relates to MPN patients. We will be joined by...

MPN Voice is once again, working with Leukaemia Care to share the government gui...

Mazcd

Partner•4 years ago

11 Replies

Pegasus Syringe

Yes mine leaks as well. I’ve been slowing the whole process down to try and stop this happening. The worst part about it is that you don’t know if you have...

Yes mine leaks as well. I’ve been slowing the whole process down to try and stop...

tracey1003

•4 years ago

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Hepcidin Mimetic PTG-300 Shows Early Promise in Polycythemia Vera

"PTG-300 is a big deal, and it is something different," said study investigator, Ronald Hoffman, MD, of The Icahn School of Medicine at Mount Sinai. "It was...

"PTG-300 is a big deal, and it is something different," said study investigator,...

Manouche

•4 years ago

3 Replies

Pains in knees and legs

Hi we'll had results back on blood test to see why I've got such pains in knees and legs everything came back normal I've got et and jak2 pos I'm on asprin...

Hi we'll had results back on blood test to see why I've got such pains in knees ...

Chel1

•4 years ago

6 Replies

Pneumonia Injection

My doctors have just rang to say I am eligible for a pneumonia injection. I have ET,Jak 2 positive and take Hydroxycarbamide daily - Is it safe for me to have...

My doctors have just rang to say I am eligible for a pneumonia injection. I have...

Mallard

•4 years ago

7 Replies

How to get shielding letter (scotland)

Hi, i have ET and take 16 hydroxy a week. My boss did a risk assessment at the start of covid outbreak and as gov Scotland stated i was in high risk and...

Hi, i have ET and take 16 hydroxy a week. My boss did a risk assessment at the s...

Lainy1

•4 years ago

13 Replies

PV with high MCV,high RDW ,all other parameters normal - what does it mean ?

Was diagnosed with PV in 2019 in February 2019. Was put on Hydroxyurea. Now in February my blood reports are looking much better with all other parameters...

Was diagnosed with PV in 2019 in February 2019. Was put on Hydroxyurea. Now in F...

Iwillwin123

•4 years ago

7 Replies

New to Essential Thrombocythemia

I am a 44yr old woman and was diagnosed in February 2020 with essential thrombocythemia even though my bone marrow test and bloodwork said otherwise and no...

I am a 44yr old woman and was diagnosed in February 2020 with essential thromboc...

Beths3

•4 years ago

20 Replies

ERYTHROMELALGIA

Here I am again! In my recent post I mentioned painful toe and foot and this has since got an awful lot worse. My little toe is purple and I am having the...

Here I am again! In my recent post I mentioned painful toe and foot and this has...

azaelea

•4 years ago

16 Replies

Pegasys syringe sometimes leaks

I have been on Pegasys 90mcg weekly since last July. I am always very careful preparing the syringe but approximately every second or third week some leaks out...

I have been on Pegasys 90mcg weekly since last July. I am always very careful pr...

Otterfield

•4 years ago

18 Replies

They had to have one more go at me.

Hi my MPN family You have all supported me during the difficult times where my mum was first diagnosed with Covid 19 and her passing almost a month ago. You...

Hi my MPN family You have all supported me during the difficult times where my ...

jillydabrat

•4 years ago

46 Replies

They had to have one more go at me.

Hi my MPN family You have all supported me during the difficult times where my mum was first diagnosed with Covid 19 and her passing almost a month ago. You...

Hi my MPN family You have all supported me during the difficult times where my ...

jillydabrat

•4 years ago

4 Replies

Phyllis George dies of polycythemia Vera at age 70

https://www.nkytribune.com/2020/05/phyllis-george-former-miss-america-and-first-lady-of-kentucky-dies-of-rare-blood-disease-at-age-70/ George was diagnosed...

https://www.nkytribune.com/2020/05/phyllis-george-former-miss-america-and-first-...

Manouche

•4 years ago

11 Replies

Returning to work

Hi all During the next few weeks as the government further lifts its restrictions, my work will be introducing a phased return of staff to the office. Whilst i...

Hi all During the next few weeks as the government further lifts its restriction...

Lina_uk

•4 years ago

9 Replies

Update - Good News/Not good news

Just had a tele-medicine visit with my new MPN Specialist at Johns Hopkins. the renowned Dr. Spivak has decided to cut back after 47 years in practice. The...

Just had a tele-medicine visit with my new MPN Specialist at Johns Hopkins. the...

hunter5582

•4 years ago

53 Replies

WHAT'S THE DIFFERENCE BETWEEN VIRAL & BACTERIAL INFECTIONS?

Post by MPN-MATE Admin » Sat May 16, 2020 10:06 am Morning everyone... :D Hope everyone is staying safe & well... Speaking of which, a recent article has...

Post by MPN-MATE Admin » Sat May 16, 2020 10:06 am Morning everyone... :D Hop...

socrates_8

•4 years ago

5 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2020

Venesection

Help, I’m too anxious to listen to info re MPNs and COVID

Do people on here work or do you claim disability allowance if taking hydroxycarbamide

Thank you for webinar

Am I the last person to receive a shielding text?

German translation of MPN brochure?

Interferon

Blood counts dropping

Hydroxyurea and Zoloft

EXERCISE INJURY & RECOVERY – (TIME IS THE THING...)

Update!

Probably unrelated...stomach pains after running?

Update on replies Re: Erythromelalgia

Low sodium

A 2nd Webinar for MPN patients relating to government guidance on COVID-19. Friday 22nd May 2020 – 3 pm

Pegasus Syringe

Hepcidin Mimetic PTG-300 Shows Early Promise in Polycythemia Vera

Pains in knees and legs

Pneumonia Injection

How to get shielding letter (scotland)

PV with high MCV,high RDW ,all other parameters normal - what does it mean ?

New to Essential Thrombocythemia

ERYTHROMELALGIA

Pegasys syringe sometimes leaks

They had to have one more go at me.

They had to have one more go at me.

Phyllis George dies of polycythemia Vera at age 70

Returning to work

Update - Good News/Not good news

WHAT'S THE DIFFERENCE BETWEEN VIRAL & BACTERIAL INFECTIONS?

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