Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,730 posts

All posts for May 2021

Has anyone with ET had a DVT? What were the symptoms? If so, how was it treated?

I have been having some leg pain and wondered if it could be a DVT.

Whitehair51

•3 years ago

3 Replies

Proximal onycholysis

Just wondering if anyone taking hydroxyurea or ruxolitinib has had any nail problems. Two of my fingernails (thumb and ring finger) started with bruises under...

Just wondering if anyone taking hydroxyurea or ruxolitinib has had any nail prob...

Buggerbear

•3 years ago

17 Replies

MPN and amitriptyline

Should a GP prescribe amitriptyline to a patient who is already suffering from fatigue due to MDS/MPN? I have cut down to taking it every other day (at 6.0...

Should a GP prescribe amitriptyline to a patient who is already suffering from f...

MaggieSylvie

•3 years ago

20 Replies

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Oh no!

More laughs! I DON’T BELIEVE IT! Apparently after all that carnage I didn’t fill something in properly. I’ve got to do it all again😲😲😲 Best wishes to all,...

More laughs! I DON’T BELIEVE IT! Apparently after all that carnage I didn’t fi...

beetle

•3 years ago

7 Replies

Are there any foods or supplements anyone has found to help build RBC?

My husband has had ET since 2013. On hydroxyurea and low dose aspirin. Recently 2nd bone marrow now shows secondary MF. No MPN near us. Looking for any...

My husband has had ET since 2013. On hydroxyurea and low dose aspirin. Recently ...

dburbax

•3 years ago

1 Reply

new member with p-vera exon 12

Hi everyone, I was recently diagnosed with p-vera. Have been treated by a local hematologist/oncologist with expert consult from doctor at Weill Cornell....

Hi everyone, I was recently diagnosed with p-vera. Have been treated by a local...

gvibes

•3 years ago

10 Replies

NAC

Hi everyone... Hoping someone can share their experience.... I am taking hydroxyurea & low dose daily aspirin....... can I take the NAC supplement while on...

Hi everyone... Hoping someone can share their experience.... I am taking hydr...

Hidden

•3 years ago

8 Replies

Vaccine antibodies

Be interesting if we all listed our results on one thread I’m now 203 u/ml at 4 months (2nd jab at 2 months). My hem, who is involved in the Oxford trial said...

Be interesting if we all listed our results on one thread I’m now 203 u/ml at 4 ...

Paul123456

•3 years ago

21 Replies

Sweating

Been diagnosed with ET, Jaj2 pos with Calreticulan. mutation in 2006. Have gone through gamut of side effects. Massive headaches, tinnitus even leading to ear...

Been diagnosed with ET, Jaj2 pos with Calreticulan. mutation in 2006. Have gone ...

BellTech

•3 years ago

4 Replies

You have to laugh!

My curiosity got the better of me and I sent for a testing for all covid antibody test. (Probably wasted my money I expect!). Well I set about doing the blood...

My curiosity got the better of me and I sent for a testing for all covid antibod...

beetle

•3 years ago

31 Replies

Platelets results

Hi had my appointment over the phone with haematology my platelets number count gone up slightly from 615 to 701 talk to see how a was going if got any...

Hi had my appointment over the phone with haematology my platelets number count...

Jody00

•3 years ago

6 Replies

Night sweats

Is any of you with ET having night sweats? I have them once in a while. Is it normal in ET? And why do we get them? I hope you all had a nice and sunny...

Is any of you with ET having night sweats? I have them once in a while. Is it no...

Johan2021

•3 years ago

17 Replies

Wanting to thank everyone for their input, kindness and responses.

Hi Everyone Thank you all for answering my questions and sharing such great information. This is frightening being diagnosed with something you have never...

Hi Everyone Thank you all for answering my questions and sharing such great info...

Sunnylesser

•3 years ago

1 Reply

Little red sores on lower legs

I have noticed lately that I have been getting little red patches on my lower legs that never go away. Some just look like dry skin but if I try and brush it...

I have noticed lately that I have been getting little red patches on my lower le...

Jenny_F

•3 years ago

14 Replies

Borderline high platelets

Hi all, My GP has referred me to a hematologist for a slightly high platelet count. The hospital cut off being 400 rather than 450. My platelets are only 453...

Hi all, My GP has referred me to a hematologist for a slightly high platelet co...

Lunarj

•3 years ago

24 Replies

JAK2 test

Hi everyone, Had bloods tested for JAK2 two weeks ago, but wondering how long these usually take to come back? I am in the UK. Thanks in advance. Lynn🙂

Hi everyone, Had bloods tested for JAK2 two weeks ago, but wondering how long th...

Peetzil

•3 years ago

12 Replies

Anyone experiencing tremors, possibly related to their MPN?

Diagnosed w/covid 3/26, spent a week in ICU and I’m still recovering. My Jak2 MF labs have remained XLNT. Upon release from hospital, I started having tremors,...

Diagnosed w/covid 3/26, spent a week in ICU and I’m still recovering. My Jak2 MF...

blu3yedblonde

•3 years ago

21 Replies

ERROR VIT D

1 tablet a week !! Sorry

Wyebird

•3 years ago

9 Replies

Vit D update

After months of not wanting to even get out of bed it was eventually discovered my Vit D level was 31 ( very low is below 30) I was put on a prescribed Vit D....

After months of not wanting to even get out of bed it was eventually discovered ...

Wyebird

•3 years ago

12 Replies

ET is Chronic Leukemia?🤔

Hi guys!Im in some groups on facebook about ET and im having some misunderstandings,some of the people there says that ET is a Chronic Leukemia,which i believe...

Hi guys!Im in some groups on facebook about ET and im having some misunderstandi...

Alexa445

•3 years ago

19 Replies

Dear friends, I have a ‘what would you do’ scenario that I’d really love your help with, please.

A short update for those following - When I saw my haematologist last week it was quite unpleasant, I think her impatience was due to her ridiculous workload...

A short update for those following - When I saw my haematologist last week it wa...

Magentas

•3 years ago

16 Replies

Update on my recent post

First I want to thank everybody for the many kind and empathetic replies to my previous post regarding my herniated disc problems. I am actually doing better...

First I want to thank everybody for the many kind and empathetic replies to my p...

Cja1956

•3 years ago

2 Replies

👉🏽 question about Epo 👈🏽

Hello MPNers, Those of you with experience of Epo treatment - do you know, even roughly, how long it took for you to start feeling benefits from it? And is...

Hello MPNers, Those of you with experience of Epo treatment - do you know, even...

LucyGeering

•3 years ago

6 Replies

WARWICK'S ASCT ~ LATEST UPDATE...

Evening all... :-) Below I have Posted Warwick's latest Update on his Stem Cell Transplant journey... Best wishes all, stay safe & well... Steve Re:...

Evening all... :-) Below I have Posted Warwick's latest Update on his Stem Cell...

socrates_8

•3 years ago

18 Replies

Article re Pfizer vaccine response incl MPNs

https://jhoonline.biomedcentral.com/articles/10.1186/s13045-021-01090-6

Paul123456

•3 years ago

8 Replies

Update 5.5 - Good News

The Pegasys was finally authorized and arrived yesterday. I did my first self-injection of 45mcg PEG at my hematology office the same day. The wonderful...

The Pegasys was finally authorized and arrived yesterday. I did my first self-i...

hunter5582

•3 years ago

40 Replies

Whoa

So I’m 52… have always been told that I was disgustingly healthy. Active mother of two. Then in 2016, I almost bled to death was hospitalized, blood...

So I’m 52… have always been told that I was disgustingly healthy. Active mother...

Bug68

•3 years ago

17 Replies

Covid jab and interferon injection

Hi Hope everyone is doing OK. Quick question. I had my second covid jab this morning. Iam due to have my interferon injection this evening. (45MG EVERY...

Hi Hope everyone is doing OK. Quick question. I had my second covid jab this ...

Elab

•3 years ago

6 Replies

Has anyone been diagnosed with Polycythemia Vera over 60 years old and Not taking medication despite medical advise?

Wondering how critical it is to start medication hydrea Right away or could I do phlebotomy first and see how counts come down. I am 70 and I know high risk...

Wondering how critical it is to start medication hydrea Right away or could I d...

Sunnylesser

•3 years ago

11 Replies

Watch Out World Here I Come

Well after much delaying and a couple of prompting emails I finally found time to do my Covid Antibody test sent by Imperial College London / Ipsos MORI on...

Well after much delaying and a couple of prompting emails I finally found time t...

JediReject

•3 years ago

47 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2021

Has anyone with ET had a DVT? What were the symptoms? If so, how was it treated?

Proximal onycholysis

MPN and amitriptyline

Oh no!

Are there any foods or supplements anyone has found to help build RBC?

new member with p-vera exon 12

NAC

Vaccine antibodies

Sweating

You have to laugh!

Platelets results

Night sweats

Wanting to thank everyone for their input, kindness and responses.

Little red sores on lower legs

Borderline high platelets

JAK2 test

Anyone experiencing tremors, possibly related to their MPN?

ERROR VIT D

Vit D update

ET is Chronic Leukemia?🤔

Dear friends, I have a ‘what would you do’ scenario that I’d really love your help with, please.

Update on my recent post

👉🏽 question about Epo 👈🏽

WARWICK'S ASCT ~ LATEST UPDATE...

Article re Pfizer vaccine response incl MPNs

Update 5.5 - Good News

Whoa

Covid jab and interferon injection

Has anyone been diagnosed with Polycythemia Vera over 60 years old and Not taking medication despite medical advise?

Watch Out World Here I Come

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