Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,843 posts

All posts for September 2022

Nattokinase

Does anyone take nattokinase or know anything about it?

Barbiebreath

•2 years ago

12 Replies

Bronchitis, hospitalization and pancytopenia

hi everyone, I am currently on peg 45mcg/week and somehow got a nasty bronchitis that I was unable to shake. I was sent by my GP to the hospital ER to receive...

hi everyone, I am currently on peg 45mcg/week and somehow got a nasty bronchiti...

leefsu97

•2 years ago

7 Replies

Body Odor

Hi. I have an unusual request. I have been on Hydrea for a few months and am beginning to notice that I have weird body odor. Have any of you had bad body odor...

Hi. I have an unusual request. I have been on Hydrea for a few months and am beg...

AndyKay

•2 years ago

4 Replies

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Another week and another issue with my consultant

After my infuriating visit to the consultant last week, I got an infuriating letter from them. It has sent me into a fit of rage. Not only is it completely...

After my infuriating visit to the consultant last week, I got an infuriating let...

Fjdjdjdjd

•2 years ago

7 Replies

Bone Marrow biopsy

I was diagnosed with PV in 2014 and had bone marrow with inconclusive results. Recent blood tests now show I have ET and my consultant wants another bone...

I was diagnosed with PV in 2014 and had bone marrow with inconclusive results. R...

MCBR2

•2 years ago

9 Replies

Is this normal

I hope all is well with everyone I don't know if anyone will answer the question as it's a bit personal and don't even know if it's normal but here goes. I...

I hope all is well with everyone I don't know if anyone will answer the questi...

JeniMac

•2 years ago

14 Replies

Allele burden shock

During the visit with the MPN consultant yesterday to organise going on Pegasys, I found out the results of my JAK2 allele burden test: 79% ! I am...

During the visit with the MPN consultant yesterday to organise going on Pegasy...

Aldebaran25

•2 years ago

15 Replies

will I tolerate Hydroxy after interferon?

hello everyone. After having given Interferon for ET a good go, I haven’t been able to continue on it. Currently just on aspirin awaiting next blood results to...

hello everyone. After having given Interferon for ET a good go, I haven’t been a...

Baimead

•2 years ago

6 Replies

query on previous meds before realising/dx with ET and how long?

Hi all, I have just watched the latest MPN seminar (which I always fine very interesting and informative) There is always a Q&A but it did raise a question...

Hi all, I have just watched the latest MPN seminar (which I always fine very in...

Grendall

•2 years ago

4 Replies

Continued

the recipe

Mostew

•2 years ago

Be the first to reply

Continued

recipe

Mostew

•2 years ago

3 Replies

For all fans of gin !!

worth a try ?

Mostew

•2 years ago

3 Replies

Spleen - normal size varies by height of the person

Hi All, I recently had a visit to a new MPN specialist after mine changed hospitals. I was discussing my diagnosis of pre-MF and why that diagnosis versus...

Hi All, I recently had a visit to a new MPN specialist after mine changed hosp...

BlastedKnees

•2 years ago

10 Replies

opinion on submarine trip

I’m very lucky to be going on holiday to the Caribbean in November. I would like to take part on a 150 foot descent, air conditioned submarine trip to view...

I’m very lucky to be going on holiday to the Caribbean in November. I would like...

Peachjoy

•2 years ago

11 Replies

Covid jab no.6

how do all you people with mpn’s feel about having yet another booster for Covid? I’m only having it if it’s Pfizer like the previous jabs.

how do all you people with mpn’s feel about having yet another booster for Covid...

HazeBlue

•2 years ago

68 Replies

Interferons as the First Choice of Cytoreduction in ET and PV

»Interferons are a group of cytokines with immunomodulatory properties and were the first immune therapies used in the treatment of cancers, including...

»Interferons are a group of cytokines with immunomodulatory properties and were...

Manouche

•2 years ago

12 Replies

Symptoms

I got a nummular headache six days after the second Moderno booster vaccine. I am wondering if it was from the vaccine or the fact that I was starting with...

I got a nummular headache six days after the second Moderno booster vaccine. ...

Winchie

•2 years ago

2 Replies

scalp problem in Hydroxy

very dry scalp on Hydroxycarbamide! Any one else with Et/PV have scalp problems? my scalp is very crusty and I’m sure it’s the drug Hydroxy that’s caused...

very dry scalp on Hydroxycarbamide! Any one else with Et/PV have scalp problems...

HazeBlue

•2 years ago

12 Replies

Triple negative ET has or has not worse prognosis? According to this video (snapshot), it has worse.

In case that triple negative ET transforms to MF, even the SCT has no good results. I really feel hopeless. I can't go on with these probabilities in my...

In case that triple negative ET transforms to MF, even the SCT has no good resul...

Aneliv9

•2 years ago

28 Replies

Bivalent Boosters for MPN Community

Hello, You might have noticed that Bivalent (term they use for the updated new covid vaccination ) boosters are here. Anybody heard from their health care...

Hello, You might have noticed that Bivalent (term they use for the updated new...

AnonymousMike

•2 years ago

17 Replies

MPN-MPN-total liver protein - decreased protein synthesis capacity of the liver

I am an MPN-MF patient and have been ill for 10 years. I am a follow-up person who takes meticulous notes. I found that for some MPN people, just like my...

I am an MPN-MF patient and have been ill for 10 years. I am a follow-up person w...

merlisa

•2 years ago

6 Replies

???? GGiGizGiz aa cclcluclue

ThThiThisThis iisis rrereareasreasoreasonreason nnonotnot bbebeebeenbeen rreresrespresporesponrespondrespondirespondinrespondingresponding ttoto yyoyouyou...

ThThiThisThis iisis rrereareasreasoreasonreason nnonotnot bbebeebeenbeen rreresr...

JediReject

•2 years ago

27 Replies

Over reaction by heamo

I started back on hydroxy 6 weeks ago after taking nothing for 6 weeks platelets have risen slightly 711 to 736. Increase hydroxy to 1000mg 4 days & 500mg for...

I started back on hydroxy 6 weeks ago after taking nothing for 6 weeks platelet...

ciye

•2 years ago

3 Replies

ET CALR - Heavy Flu like head, neuropathy

Hello all, 64 years old male here in search of reasons for feeling miserable every day. I’m dealing with flu like heavy head within which my heartbeat throbs...

Hello all, 64 years old male here in search of reasons for feeling miserable ev...

George1976

•2 years ago

10 Replies

Weight gain and JAK 2 inhibitors

For those of us with positive JAK2.... I was doing some research on the web to determine a possible cause for my tummy bloating and weight gain. I was...

For those of us with positive JAK2.... I was doing some research on the web to ...

Hidden

•2 years ago

15 Replies

I made .

did it 32.2miles 11hr 30 minutes and 15 seconds. Thank you such am Amazing charity!!!

did it 32.2miles 11hr 30 minutes and 15 seconds. Thank you such am Amazing chari...

Avamia94

•2 years ago

12 Replies

PV patients and Common Variable Immune Deficiency Adult Onset

I have been a PV patient since 2012 and on Ruxolitinib 20mg 2xday since 2017. In the past two years my IG's have begun to fall as have my B cells and T cells....

I have been a PV patient since 2012 and on Ruxolitinib 20mg 2xday since 2017. I...

Psteuer

•2 years ago

10 Replies

Mpn walk accrington to Blackpool.

set off at 5am to get to Blackpool just 10miles to go. Please read my story and help raise awareness: http://www.justgiving.com/fundraising/fromatobformpn

set off at 5am to get to Blackpool just 10miles to go. Please read my story ...

Avamia94

•2 years ago

8 Replies

Hydroxyurea and cracked teeth?

Hi, Has anyone had issues with cracked teeth while taking Hydrea ? I'm 74 and have been on Hydrea about 1 year. In the last 6 months, I have had 3...

Hi, Has anyone had issues with cracked teeth while taking Hydrea ? I'm 74 an...

Jamesxyz

•2 years ago

19 Replies

The video of the MPN Voice patients’ ‘virtual’ forum, held on Wed 7 Sep 2022, is now available to view.

This online forum focussing on ET – featured talks from: Dr Anna Godfrey, Cambridge University Hospitals; Prof Mary Frances McMullin, Queen’s University...

This online forum focussing on ET – featured talks from: Dr Anna Godfrey, Cambri...

Mazcd

Partner•2 years ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2022

Nattokinase

Bronchitis, hospitalization and pancytopenia

Body Odor

Another week and another issue with my consultant

Bone Marrow biopsy

Is this normal

Allele burden shock

will I tolerate Hydroxy after interferon?

query on previous meds before realising/dx with ET and how long?

Continued

Continued

For all fans of gin !!

Spleen - normal size varies by height of the person

opinion on submarine trip

Covid jab no.6

Interferons as the First Choice of Cytoreduction in ET and PV

Symptoms

scalp problem in Hydroxy

Triple negative ET has or has not worse prognosis? According to this video (snapshot), it has worse.

Bivalent Boosters for MPN Community

MPN-MPN-total liver protein - decreased protein synthesis capacity of the liver

???? GGiGizGiz aa cclcluclue

Over reaction by heamo

ET CALR - Heavy Flu like head, neuropathy

Weight gain and JAK 2 inhibitors

I made .

PV patients and Common Variable Immune Deficiency Adult Onset

Mpn walk accrington to Blackpool.

Hydroxyurea and cracked teeth?

The video of the MPN Voice patients’ ‘virtual’ forum, held on Wed 7 Sep 2022, is now available to view.

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