Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for July 2020

Itching with PV

I usually getting bad itching after a shower etc, but this morning it started “for no reason”? And went on longer than usual,. Does anyone know What actually...

I usually getting bad itching after a shower etc, but this morning it started “f...

Yvette49

•4 years ago

32 Replies

Aspirin

Hi guys! Hope everyone is keeping well. Quick query, I’m going to get a beauty procedure done and have been advised to come off Aspirin prior to avoid excess...

Hi guys! Hope everyone is keeping well. Quick query, I’m going to get a beauty...

Mackydee123

•4 years ago

9 Replies

MPN and back injuries

A week after my diagnosis with MDS/MPN I got a slipped disc. Less than a year after that, I was still suffering but it had just started to improve and then it...

A week after my diagnosis with MDS/MPN I got a slipped disc. Less than a year a...

MaggieSylvie

•4 years ago

22 Replies

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Still here!

Hi - just realised it's been a long time since my last post. I've been trying to get to reason for my fatigue - as I mentioned in previous posts it seems to...

Hi - just realised it's been a long time since my last post. I've been trying to...

Not2bad

•4 years ago

9 Replies

Possible new Anti-platelet drug with reduced bleeding issues goes to human trials

Hi All, I hope everyone is trucking along OK at the moment and making the most out of life as it is. Not sure if this has already been posted about on here...

Hi All, I hope everyone is trucking along OK at the moment and making the most ...

SilverET

•4 years ago

1 Reply

First post and thank you

Hi I am relatively new to the group having joined about a month ago. I find myself looking at the posts every day as a way to connect with people with similar...

Hi I am relatively new to the group having joined about a month ago. I find myse...

Katy121

•4 years ago

18 Replies

JAK v617f tests

Hi all I have a diagnosis of CALR positive Primary Myelofibrosis with ASXL1. My haematologist has suggested I have a JAK v617f disease burden test but that...

Hi all I have a diagnosis of CALR positive Primary Myelofibrosis with ASXL1. My...

ConniesDad

•4 years ago

18 Replies

Really Droopy Eyelids

Can anyone explain whether really droopy eyelids are a symptom of ET. I thought that perhaps I am now allergic to the Hydrea. Today they nearly covered my...

Can anyone explain whether really droopy eyelids are a symptom of ET. I thought...

Hidden

•4 years ago

10 Replies

From leeches to interferon: should cytoreduction be prescribed for all patients with polycythemia vera?

https://rdcu.be/b5JAt

Manouche

•4 years ago

3 Replies

Vaccine update

Hello my MPN buddies I came across this update on the status of coronavirus vaccine development in respect of blood cancer sufferers. It was published by the...

Hello my MPN buddies I came across this update on the status of coronavirus vacc...

Ovingite

•4 years ago

17 Replies

Heparin and platelet count

Does heparin lower platelets? Since i am on heparin my level dropped with 100

littleluigi

•4 years ago

4 Replies

Could it be ET?

A few months ago I noticed on my GP portal my platelets have been high for a few years and asked my new GP to investigate. She repeated bloods and platelets...

A few months ago I noticed on my GP portal my platelets have been high for a few...

Jessiexx

•4 years ago

22 Replies

First post from a newbie awaiting JAK2 result

Hi, First post from a 69 yr old newbie nervously waiting for my JAK2 result [so far 12 days]. I emailed my doctor as I was having off the scale pins and...

Hi, First post from a 69 yr old newbie nervously waiting for my JAK2 result [so ...

Inan

•4 years ago

26 Replies

Thank you to all my MPN friends

Hi, I want to thank you for all the thoughts and advice sent in reply to my query about visiting my son this weekend. Your thoughts were much appreciated and...

Hi, I want to thank you for all the thoughts and advice sent in reply to my quer...

azaelea

•4 years ago

4 Replies

Living with Myeloproliferative Neoplasm - ET Jak2+ and Chronic Neuropathic Pain

There is much money in the pain and drug industry. Ethics and the recipients of these drugs do not factor into the bottom line. Profit and Loss Statements...

There is much money in the pain and drug industry. Ethics and the recipients of...

Hidden

•4 years ago

21 Replies

Instant relief without drugs

Oil of Cloves or ground up cloves placed on the offending tooth. Relief is instant and you can keep applying it until you can get the dentist.

Oil of Cloves or ground up cloves placed on the offending tooth. Relief is insta...

Hidden

•4 years ago

5 Replies

Is anyone else worried about stopping shielding?

I am lucky enough to be able to work from home, and while I miss face to face contact with people I have a better work life balance and am finding I am more...

I am lucky enough to be able to work from home, and while I miss face to face co...

Jenny_F

•4 years ago

18 Replies

Back to reality . Am I being dramatic

Back to work this week I work full time, three 13hr shift a week. I was very nervous but my gp/ consultant said I should be fine if I keep my 2meters and a...

Back to work this week I work full time, three 13hr shift a week. I was very ner...

Avamia94

•4 years ago

2 Replies

Hematologist

When I read you posts you all seem to have a hematologist that you see all the time. I have Pv and budd chiari have only seen the same doctor twice...

When I read you posts you all seem to have a hematologist that you see all t...

Palace53

•4 years ago

14 Replies

When Iʼm 84: What Should Life Look Like in Old Age?

Post by MPN-MATE Admin » Fri Jul 17, 2020 1:17 pm Hey guys... :D The Title of this topic I am finding one worthy of a stimulating discussion that I hope a...

Post by MPN-MATE Admin » Fri Jul 17, 2020 1:17 pm Hey guys... :D The Title o...

socrates_8

•4 years ago

32 Replies

Occupational health

A word of warning. This is false information but it's what I was told. I'm sharing this incase anyone has a covid risk assessment for work. I'm sure there are...

A word of warning. This is false information but it's what I was told. I'm shari...

EleanorPV

•4 years ago

10 Replies

Night sweats - PV

Does anyone with PV suffer from night sweats? My husband gets them awful and when his local consultant phoned yesterday she said it was nothing to do with PV....

Does anyone with PV suffer from night sweats? My husband gets them awful and wh...

scousesbird

•4 years ago

18 Replies

When change in treatment?

I have had PV 3 years and initially had phlebotomy every 6 to 8 weeks then 3/4 times a year. Recently had one done every month last 3 months and feel like I...

I have had PV 3 years and initially had phlebotomy every 6 to 8 weeks then 3/4 ...

Alex9621

•4 years ago

7 Replies

Calling Pegysus Interferon users!

Hi gang, BMB results day today🙈 All indicators so far are that I’ll be starting on Pegysus, which I’m pretty excited about if my dream of it reducing my ET...

Hi gang, BMB results day today🙈 All indicators so far are that I’ll be starti...

IrishSarah

•4 years ago

30 Replies

Checking in Time to all my Blood Sisters & Brother’s 🌹

How’s everyone feeling with the release of our Shielding coming up ? From 16 March I’ve done my time indoors Staying safe 💙,I’m feeling very uneasy about...

How’s everyone feeling with the release of our Shielding coming up ? From 16 Ma...

Phelpsy

•4 years ago

24 Replies

Curious of Other Peoples Experiences

I do not have Pre-MF, but my husband was recently diagnosed. He is only 51. We had no idea, but he lost a dramatic amount of weight and became quite fatigued....

I do not have Pre-MF, but my husband was recently diagnosed. He is only 51. We h...

TM76

•4 years ago

31 Replies

Botox

Hi can we have any Botox treatment if we have ET

Windy51

•4 years ago

8 Replies

OVERCOMING GVHD AFTER ASCT

Post by MPN-MATE Admin » Thu Jul 16, 2020 9:56 am Morning all... :D For some of us here, (but hopefully not all...?), some may eventually have to travel...

Post by MPN-MATE Admin » Thu Jul 16, 2020 9:56 am Morning all... :D For some...

socrates_8

•4 years ago

1 Reply

Folate/Folic Acid

I had my telephone consultation today (ET JAK2+ Pegasys) and was initially horrified to hear that my Haemoglobin was 77 and Platelets 46! However, it turns out...

I had my telephone consultation today (ET JAK2+ Pegasys) and was initially horri...

Otterfield

•4 years ago

9 Replies

Covid test

Hello has anyone had to have a Covid test before they have their hospital appointment for their venesection? I have had my blood test which shows bloods up a...

Hello has anyone had to have a Covid test before they have their hospital appoin...

Maisie10

•4 years ago

17 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2020

Itching with PV

Aspirin

MPN and back injuries

Still here!

Possible new Anti-platelet drug with reduced bleeding issues goes to human trials

First post and thank you

JAK v617f tests

Really Droopy Eyelids

From leeches to interferon: should cytoreduction be prescribed for all patients with polycythemia vera?

Vaccine update

Heparin and platelet count

Could it be ET?

First post from a newbie awaiting JAK2 result

Thank you to all my MPN friends

Living with Myeloproliferative Neoplasm - ET Jak2+ and Chronic Neuropathic Pain

Instant relief without drugs

Is anyone else worried about stopping shielding?

Back to reality . Am I being dramatic

Hematologist

When Iʼm 84: What Should Life Look Like in Old Age?

Occupational health

Night sweats - PV

When change in treatment?

Calling Pegysus Interferon users!

Checking in Time to all my Blood Sisters & Brother’s 🌹

Curious of Other Peoples Experiences

Botox

OVERCOMING GVHD AFTER ASCT

Folate/Folic Acid

Covid test

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