Posts - MPN Voice | HealthUnlocked

MPN Voice

10,784 members • 14,980 posts

All posts for November 2022

ET Jak 2 Hydroxcarbamide Low WBC

Morning everyone, I have been on a daily 500 grm of Hydroxcarbamide for about a year and my platelets have stablised in the normal range. However, just had...

Morning everyone, I have been on a daily 500 grm of Hydroxcarbamide for about ...

Cassandra61

•2 years ago

4 Replies

Fascinating Results different drugs

My journey on different drugs shows the reaction they can have in short periods. I am ET Jak2 positive diagnosed March 2022. Took Hydroxy 500mg daily 5 days...

My journey on different drugs shows the reaction they can have in short periods....

Exeter21

•2 years ago

1 Reply

Cataract surgery

I am on Besremi, any recommendations to cataract surgery? What kind of lens monofocal or multifocal lenses, blue filter, etc, etc. Thanks

I am on Besremi, any recommendations to cataract surgery? What kind of lens mono...

SoledadBarcelona

•2 years ago

8 Replies

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between a rock and a hard place.

I’m supposed to get my platelets down,according to my MPN specialist, below 400 before my hip surgery on 12/21. So had to take hydrea daily instead of 4x a...

I’m supposed to get my platelets down,according to my MPN specialist, below 400 ...

Pounds11

•2 years ago

8 Replies

Flublok Vaccine

I recently posted on selecting this version of the flu vax for its potential advantages....

I recently posted on selecting this version of the flu vax for its potential adv...

EPguy

•2 years ago

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Headaches on HU

I was diagnosed with ET/JAK2 June 2022. I was put on HU 500 mg daily. I started with headaches after two weeks. If headache was bad then I felt light...

I was diagnosed with ET/JAK2 June 2022. I was put on HU 500 mg daily. I star...

Mirror368

•2 years ago

8 Replies

Losing faith

i don’t normally come here to moan but I feel I need speak to someone since the pandemic it feels like I have completely different team altogether my liver...

i don’t normally come here to moan but I feel I need speak to someone since the ...

Leighcox85

•2 years ago

23 Replies

Ropeg 6 Year Allele Data (apparently) Revealed

Top point: Data may show an increase in average allele after 5 years on Bes, see orange plot line. -- I've been searching for 6 year update to the familiar...

Top point: Data may show an increase in average allele after 5 years on Bes, see...

EPguy

•2 years ago

18 Replies

Red skin impression shoulders

Evening All, I attended Lord Mayor's show today in London and being a good dad, I carried a rucksack with drinks,sweets and any other rubbish my family...

Evening All, I attended Lord Mayor's show today in London and being a good dad, ...

Smudger0122

•2 years ago

11 Replies

Waste

I have just over £900 worth of interferon in my fridge I no longer take and it will have to be destroyed. It was delivered in a cool bag and went straight in...

I have just over £900 worth of interferon in my fridge I no longer take and it w...

ciye

•2 years ago

13 Replies

Increased Analegride Dose - Heart Related Side Affects

Diagnosed in April with ET-Jak2. Started on Hydroxurea that got my platelet count down but after short while along came uncomfortable side effects plus highly...

Diagnosed in April with ET-Jak2. Started on Hydroxurea that got my platelet coun...

Mishie14

•2 years ago

28 Replies

Cold leg and foot

I am on my and the last few days I have been getting a really cold leg and foot both much paler than the other. I know it definitely not a clot that would be...

I am on my and the last few days I have been getting a really cold leg and foot ...

ciye

•2 years ago

3 Replies

Jak2 results

I've been waiting for Jak2 results for 11 weeks now! Can anyone tell me if they have waited this long to get their results? This has been on going since...

I've been waiting for Jak2 results for 11 weeks now! Can anyone tell me if they ...

Tinkerbelle50

•2 years ago

27 Replies

Hello Hello Interferon users

Hi gave myself a third Pegusus injection last night all whent well sort of. Although the first 2 syringe needles appeared very fine, last night's needle...

Hi gave myself a third Pegusus injection last night all whent well sort of. A...

Hidden

•2 years ago

22 Replies

blood test bingo!

I've just been to Bristol stem cell department in preparation for a possible Stem cell transplant. I had to have 14 phials of blood taken for tests. Is this...

I've just been to Bristol stem cell department in preparation for a possible Ste...

Scaredy_cat

•2 years ago

23 Replies

Recently diagnosed with Primary Myelofibrosis

Up until I caught Covid at the beginning of June 2022 I was fit, healthy and pretty active, always outdoors doing something like playing golf two or three...

Up until I caught Covid at the beginning of June 2022 I was fit, healthy and pre...

Flyingsteamer

•2 years ago

21 Replies

Cheshire Hospitals

Hi, I have ET Calr+ and will shortly be moving to Cheshire from Kent. Is there anybody on this forum with ET or another MPN who is receiving treatment at a...

Hi, I have ET Calr+ and will shortly be moving to Cheshire from Kent. Is there ...

Anoif100

•2 years ago

10 Replies

GP hasn’t recorded my condition

Hi everyone. I was diagnosed with ET nearly a year ago now and have generally been receiving a pretty bad service from both my GP and my consultant. I recently...

Hi everyone. I was diagnosed with ET nearly a year ago now and have generally be...

Fjdjdjdjd

•2 years ago

22 Replies

newly diagnosed Myelofibrosis

Hi to all Was recently diagnosed with Myelofibrosis Still learning about the condition and associated terms

Hi to all Was recently diagnosed with Myelofibrosis Still learning about the...

Discover59

•2 years ago

13 Replies

Infusion and poor veins

I’m due to have an iron infusion tomorrow, however, my veins aren’t very good. When having blood taken they take it from my hands, even the most experienced...

I’m due to have an iron infusion tomorrow, however, my veins aren’t very good. W...

lizzziep

•2 years ago

7 Replies

Low iron levels

Been on treatment for ET for some time now and I take 500mg HU and 1x4 of angralide..platelets around 350 to 480 . My haemoglobin levels are low and felt...

Been on treatment for ET for some time now and I take 500mg HU and 1x4 of angra...

heathermc

•2 years ago

9 Replies

Gout in back?

Hi all, I have seen a few posts recently regarding Gout. My query is a recent CT scan to check for kidney stones showed Degenerative disc disease as I have...

Hi all, I have seen a few posts recently regarding Gout. My query is a recent C...

Grendall

•2 years ago

9 Replies

Pegasys

Hi is anyone out there taking Pegasys (active ingredient peginterferon alfa-2a)? I have been Hydrea, (hydroxicarbomide) and my onc wants me to inject with Peg...

Hi is anyone out there taking Pegasys (active ingredient peginterferon alfa-2a)?...

jcowboy

•2 years ago

21 Replies

Tachycardia andPV

Hello everyone Hope your all well 😊 I was wondering if there is anyone out there who has experienced rapid heart beat with PV. Over this year I have had...

Hello everyone Hope your all well 😊 I was wondering if there is anyone out ther...

Mauritiu

•2 years ago

16 Replies

Besremi and kidney function

Hello to all. I’m new to posting but have so enjoyed reading others questions and comments. I have had PV since 2018. Started taking Hydrea right away and...

Hello to all. I’m new to posting but have so enjoyed reading others questions a...

P1pp1r

•2 years ago

7 Replies

MPN LONDON DAY

I just want to use this platform to say a big thank you to all who organised the conference in London on November 5. It was an excellent day, well organised...

I just want to use this platform to say a big thank you to all who organised the...

artydutch

•2 years ago

10 Replies

thank you all

Hi my MPN friends Thank you all for your lovely support on my last post re my last Haematology appointment. Well I did get a telephone call from a...

Hi my MPN friends Thank you all for your lovely support on my last post re my l...

Superwoman

•2 years ago

3 Replies

Just started hydroxyurea..

Only taken for 2 nights and feeling a little dizzy and slight nausea. For polycythemia Vera. Blood counts are all high and also had my first phlebotomy! Any...

Only taken for 2 nights and feeling a little dizzy and slight nausea. For polycy...

Ginger1017

•2 years ago

21 Replies

MPNVoice Living With MPNs. .

Went to the MPNVoice Living With MPNs day yesterday as I am fortunate to live only a tube ride away. Amazingly the auditorium was pretty full despite the...

Went to the MPNVoice Living With MPNs day yesterday as I am fortunate to live on...

MFBMT2011

•2 years ago

17 Replies

Hydroxycarbamide and hair dye and perfume

Hello all. I’ve been on hydroxy for over a year now and I’m just wondering if my imagination is working overtime.. Has anyone noticed that hair dye doesn’t...

Hello all. I’ve been on hydroxy for over a year now and I’m just wondering if m...

Cokopops

•2 years ago

20 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2022

ET Jak 2 Hydroxcarbamide Low WBC

Fascinating Results different drugs

Cataract surgery

between a rock and a hard place.

Flublok Vaccine

Headaches on HU

Losing faith

Ropeg 6 Year Allele Data (apparently) Revealed

Red skin impression shoulders

Waste

Increased Analegride Dose - Heart Related Side Affects

Cold leg and foot

Jak2 results

Hello Hello Interferon users

blood test bingo!

Recently diagnosed with Primary Myelofibrosis

Cheshire Hospitals

GP hasn’t recorded my condition

newly diagnosed Myelofibrosis

Infusion and poor veins

Low iron levels

Gout in back?

Pegasys

Tachycardia andPV

Besremi and kidney function

MPN LONDON DAY

thank you all

Just started hydroxyurea..

MPNVoice Living With MPNs. .

Hydroxycarbamide and hair dye and perfume

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