Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for October 2022

on IFN but now platelets rising!

Hi all, So had my hospital appointment Thursday gone after a 4 week gap. On INF and this blood test showed a significant increase in my platelets, yet the Doc...

Hi all, So had my hospital appointment Thursday gone after a 4 week gap. On INF...

Grendall

•2 years ago

11 Replies

Neuropathy

MPN Commuity Diagnosed in 2020 with PV Jak2+ and am currently on HU 500mg 7 days a week.I live in US and am under care of world renowned Dr Tefferi of Mayo...

MPN Commuity Diagnosed in 2020 with PV Jak2+ and am currently on HU 500mg 7 day...

Ridenez

•2 years ago

5 Replies

Gout medication advice please

Good Evening Hope you are all well I ama 50 year old lady My uric acid has been high since 2020 but when I asked my old doctor he said it was nothing to...

Good Evening Hope you are all well I ama 50 year old lady My uric acid has...

harryhonda25

•2 years ago

14 Replies

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Hydroxy Rare Side Effects

I note that one of the more rare side effects listed for Hydroxyurea is Dysuria / Renal disorders. I have been on Hydroxy for 4 years and am having recurring...

I note that one of the more rare side effects listed for Hydroxyurea is Dysuria ...

azaelea

•2 years ago

11 Replies

Make claim for PIP Allowance

I have polycythemia vera have since 2019. I want to claim PIP not sure i am entitled to it. My family telling me i should be applying for this because of my...

I have polycythemia vera have since 2019. I want to claim PIP not sure i am enti...

Taz777

•2 years ago

3 Replies

How to store Besremi syringe for reuse?

I live in the U.S. and use the 500mcg prefilled syringes of Besremi. I know the instructions say to never reuse a syringe, but I'm unsure if I will continue to...

I live in the U.S. and use the 500mcg prefilled syringes of Besremi. I know the ...

PupsBestFriends

•2 years ago

6 Replies

Covid Booster in Northern Ireland

Hi Everyone, I normally get a letter asking me to come and get my Covid Booster from the Heamotology department. I have ET Jak2+. I havent received a letter...

Hi Everyone, I normally get a letter asking me to come and get my Covid Booster ...

EmeraldA

•2 years ago

15 Replies

Flu Jab type for ET aged 63

I’ve just received my new Flu jab. 👍 I was told I have to have the one for people under 65, (I’m 63). However, the flu jab for over 65 has additional...

I’ve just received my new Flu jab. 👍 I was told I have to have the one for peo...

Peachjoy

•2 years ago

8 Replies

Instow1

dear friends Since diagnosed with E T 2 years 6 months ago I notice I get breathless easily. have anybody else noticed this Thanks for any reply

dear friends Since diagnosed with E T 2 years 6 months ago I notice I get bre...

Instow1

•2 years ago

13 Replies

hand tingling

I have ET jak2+ My hands constantly tingle. It’s not painful, unpleasant or disruptive. I know it’s considered a symptom of ET, but I’ve read it could also...

I have ET jak2+ My hands constantly tingle. It’s not painful, unpleasant or dis...

Peachjoy

•2 years ago

20 Replies

Over 65 Flu vaccine

I have just reached 65 and so my flu vaccine was the first one I've had in that category. For the first time I have had some side effects which started 24...

I have just reached 65 and so my flu vaccine was the first one I've had in that ...

jodary

•2 years ago

6 Replies

Non driving gene mutation-ASXL1

I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of...

I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon ....

merlisa

•2 years ago

11 Replies

Immunotherapy, early research for Jak2

We care about immune therapy because it's potentially curative by teaching our immune system to attack the mutation sort of like it were a virus infected cell....

We care about immune therapy because it's potentially curative by teaching our i...

EPguy

•2 years ago

12 Replies

Progression from ET, MPL positive to post ET MF

It has now been confirmed that my ET has progressed to MF. My haematologist has put me forward for a SCT, if tests confirm I’m well enough. I have also been...

It has now been confirmed that my ET has progressed to MF. My haematologist has ...

SRH55

•2 years ago

18 Replies

1st Peg

Hi all hope every one is well Had my first peg yesterday 45 around 2 pm At 8pm had to go to bed felt ill flu symptoms aching all over hot and cold didn't...

Hi all hope every one is well Had my first peg yesterday 45 around 2 pm At 8p...

JeniMac

•2 years ago

33 Replies

Can Hydrea Resolve (fix) Marrow?

In a recent thread one report has HU providing a strong benefit to marrow, esp for ET, but some in PV too, discussed here:...

In a recent thread one report has HU providing a strong benefit to marrow, esp f...

EPguy

•2 years ago

13 Replies

MF and Fedratinib

I've had MF for over 30 years. I was rejected for transplant recently because not robust enough. I have been on Ruxolitinib for about 8 years very successfully...

I've had MF for over 30 years. I was rejected for transplant recently because no...

Bullace

•2 years ago

12 Replies

Fatigue and more

Some times the description above sums up my condition perfectlyand it made me chuckle

Some times the description above sums up my condition perfectlyand it made me ch...

ciye

•2 years ago

14 Replies

A New Feature in the Health Unlocked format? Paste Images?

Very recently I found you can paste images right into your message or reply. Just for an example here is the familiar Conti PV plot from Besremi trial, I just...

Very recently I found you can paste images right into your message or reply. Ju...

EPguy

•2 years ago

1 Reply

Bone marrow biopsy

Hi everyone I had my bone marrow biopsy done In August along with a bunch of other test went back to the MPN specialist still don’t really know which...

Hi everyone I had my bone marrow biopsy done In August along with a bunch of o...

Nc3500

•2 years ago

13 Replies

Jak 2 positve v Jak 2 neg

Hi. Please could someone wxplain the difference? I am Jak 2 neg Karl positive.

Hi. Please could someone wxplain the difference? I am Jak 2 neg Karl positive. ...

Lynne-G

•2 years ago

2 Replies

MF progression??

Hello everyone, I was diagnosed with ET 21 years ago and am JAK2+. I've been fine in general (a few thrombotic episodes over the years), have ridiculous...

Hello everyone, I was diagnosed with ET 21 years ago and am JAK2+. I've been fin...

Karol_Rua

•2 years ago

9 Replies

Peg Day

Hope every one is well Tomorrow I start my new journey on Pegysas. I'm not worried about the injections but I'm a little worried about the side effects. Any...

Hope every one is well Tomorrow I start my new journey on Pegysas. I'm not wor...

JeniMac

•2 years ago

29 Replies

Is this normal for platelets to increase so quickly ?

I had a bit of a cold for a few days and also didn’t feel so great –the cold went away but still didn’t feel great. Blood test results at the hospital showed...

I had a bit of a cold for a few days and also didn’t feel so great –the cold wen...

kitttycat

•2 years ago

14 Replies

High/low JAK2 and Risk of MF progression

http://www.hematologiecongres.nl/_asset/_public/1330-1430-HARRISON2017.pdf

http://www.hematologiecongres.nl/_asset/_public/1330-1430-HARRISON2017.pdf ...

Manouche

•2 years ago

13 Replies

pain and numbness in finger tips

hi I wrote a couple of weeks ago re starting interferon. Thank you everyone for your helpful words. Will be starting end of October. I have another...

hi I wrote a couple of weeks ago re starting interferon. Thank you everyone for...

Sanga

•2 years ago

10 Replies

Anti Virals

My situation which may be useful to anyone else …. I returned from a holiday to Menorca on Monday, first holiday in 3 years, and tested positive for Covid on...

My situation which may be useful to anyone else …. I returned from a holiday to...

piggie50

•2 years ago

28 Replies

Besremi Allele Result

My Dr recently ordered a Jak2 allele test. This is 6 months after starting Bes. I think there are few Bes patients outside trials with allele data result so...

My Dr recently ordered a Jak2 allele test. This is 6 months after starting Bes....

EPguy

•2 years ago

31 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2022

on IFN but now platelets rising!

Neuropathy

Gout medication advice please

Hydroxy Rare Side Effects

Make claim for PIP Allowance

How to store Besremi syringe for reuse?

Covid Booster in Northern Ireland

Flu Jab type for ET aged 63

Instow1

hand tingling

Over 65 Flu vaccine

Non driving gene mutation-ASXL1

Immunotherapy, early research for Jak2

Progression from ET, MPL positive to post ET MF

1st Peg

Can Hydrea Resolve (fix) Marrow?

MF and Fedratinib

Fatigue and more

A New Feature in the Health Unlocked format? Paste Images?

Bone marrow biopsy

Jak 2 positve v Jak 2 neg

MF progression??

Peg Day

Is this normal for platelets to increase so quickly ?

High/low JAK2 and Risk of MF progression

pain and numbness in finger tips

Anti Virals

Besremi Allele Result

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