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MPN Voice

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All posts for February 2022

MPN Progression Webinar recording

Here is the MPN Progression webinar in case you missed it. https://www.youtube.com/watch?v=yaeHpBdRxJo

Here is the MPN Progression webinar in case you missed it. https://www.youtube....

hunter5582

•3 years ago

9 Replies

Mpn specialist

I know Norfolk and Norwich isn’t on list of MPN specialists but when I’ve asked I’ve been assured dr. Angela Collins is . Because she isn’t on list I feel...

I know Norfolk and Norwich isn’t on list of MPN specialists but when I’ve asked ...

Mostew

•3 years ago

7 Replies

MPN specialist

Could somebody remind me of the name of the MPN specialist at Guys St Thomas London please?

Could somebody remind me of the name of the MPN specialist at Guys St Thomas Lon...

Murdoch01

•3 years ago

5 Replies

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Switch from HU to Pegasys - update 3.0

Great news from my haematologist: Platelets down from 395 to 337, Hb 153, Hct 0.447. Liver, thyroid and renal profile fine; so too neutrophils and......

Great news from my haematologist: Platelets down from 395 to 337, Hb 153, Hct 0....

FG251

•3 years ago

7 Replies

Ropeginterferon

Those of you that are on ropeginterferon have you noticed any improvements on your symptoms? Which symptoms have you seen the most improvements? Thanks in...

Those of you that are on ropeginterferon have you noticed any improvements on yo...

Bears23

•3 years ago

21 Replies

Progression to PV

I was diagnosed with ET Jak 2 in 2017, I have not been feeling well for months now and was wondering how you would know if the ET has progressed to something...

I was diagnosed with ET Jak 2 in 2017, I have not been feeling well for months ...

Murdoch01

•3 years ago

7 Replies

Bruise

I've been pleased until now not to have had side effects from hydroxicarbamide. A week ago my finger knuckle went red with one pin prick. Today more purple...

I've been pleased until now not to have had side effects from hydroxicarbamide. ...

Mostew

•3 years ago

13 Replies

Dual Mutation

Hi, has anyone been diagnosed with ET dual mutation of JAK2 & MPL? Hubby has just had his second BMB and they've spotted both mutations.

Hi, has anyone been diagnosed with ET dual mutation of JAK2 & MPL? Hubby has jus...

Garandel

•3 years ago

5 Replies

Varicose veins

Hi, does anyone else get varicose veins with ET jak2+ or PV recently had a bout of flibitus just wondered if connected to MPN’s or something totally different...

Hi, does anyone else get varicose veins with ET jak2+ or PV recently had a bout ...

Mustang50

•3 years ago

11 Replies

Pneumococcal vaccination

I have ET with Jac2 and take hydroxycarbamide and aspirin. Does anyone know, is it ok to have this Pneumococcal Polysaccharide Vaccine? My thanks in advance...

I have ET with Jac2 and take hydroxycarbamide and aspirin. Does anyone know, is ...

dabs121

•3 years ago

14 Replies

Anyone attend the call today? : MPN Progression: What We Know and What We Hope to Learn

Or, is there a recording? Perhaps, the new research Manouche posted was part of the call? https://www.nature.com/articles/s41375-022-01528-x

Or, is there a recording? Perhaps, the new research Manouche posted was part of ...

Elizka

•3 years ago

2 Replies

Contra indicators with piriteze

Are there problems with taking Cetirizine Hydrochloride whilst on Hydroxicarbamide and Abixaban?

Are there problems with taking Cetirizine Hydrochloride whilst on Hydroxicarbami...

Plavers

•3 years ago

3 Replies

Newly Diagnosed PV

Hi I really don’t know what to say other than that I am just diagnosed with PV and yesterday had first venesection. I am absolutely terrified and trying my...

Hi I really don’t know what to say other than that I am just diagnosed with PV a...

Hocus58

•3 years ago

36 Replies

Experiences giving birth with MPN?

Hi gang! Would love to hear from any of you who’ve had a baby either pre or post MPN diagnosis. Were you on any treatment at the time? How was delivery...

Hi gang! Would love to hear from any of you who’ve had a baby either pre or post...

IrishSarah

•3 years ago

7 Replies

ET

Hi everyone not been on for a while had my appointment today my Platelets are now on 735 only got up a bit has my last appointment 3 months ago was on 701,...

Hi everyone not been on for a while had my appointment today my Platelets are no...

Jody00

•3 years ago

16 Replies

Covid Restrictions Lifted - Rant

Well I understand that life needs to move on, and I don't hold a grudge against those who just want to get on with things and put covid behind them - don't we...

Well I understand that life needs to move on, and I don't hold a grudge against ...

MWxxxx

•3 years ago

14 Replies

Aspirin as a painkiller??

This is probably a very very dim question, but can you still use aspirin as a medicine if you're also taking it for ET?? I take 50mg daily and normally just...

This is probably a very very dim question, but can you still use aspirin as a me...

Jane8143

•3 years ago

3 Replies

Disappointed

After losing weight and trying to be healthy my platelets went down to 356 This blood test 3 months later has seen them rise to 579 Should I be concerned..?...

After losing weight and trying to be healthy my platelets went down to 356 This ...

sweetpea19

•3 years ago

6 Replies

JAKAFI not working

Dr changed my med from HU (2000mg) to Jakafi (15mg) 2 months ago, but the blood test result worsening. Hb, white blood, Hct etc. keep up. Even platelets up...

Dr changed my med from HU (2000mg) to Jakafi (15mg) 2 months ago, but the blood ...

william-Indo

•3 years ago

15 Replies

European Besremi legal tussle continues

« In the latest chapter in an ongoing contract dispute between AOP Orphan Pharmaceuticals GmbH and Pharmaessentia Corp., the German Federal Court of Justice...

« In the latest chapter in an ongoing contract dispute between AOP Orphan Pharma...

Manouche

•3 years ago

12 Replies

Ibuprofen

I am ET JAJ2+. I take HU everyday - no aspirin . I’ve been taking ibuprofen since Friday for muscle inflammation. I can’t take a lot of pain meds so ibuprofen...

I am ET JAJ2+. I take HU everyday - no aspirin . I’ve been taking ibuprofen sinc...

Digger031145

•3 years ago

13 Replies

Instow1

Morning everyone I was diagnosed with et 18 +months ago. My consultant just increased my hydorcobmide pills too 2 Monday to Wednesday and 3 Thursday to...

Morning everyone I was diagnosed with et 18 +months ago. My consultant just...

Instow1

•3 years ago

22 Replies

Regular Pulled Muscles

Hi everyone lm wondering if anyone out there struggles with pulled muscles. I'm coming to terms with the ongoing limitations of ET and age, but right now...

Hi everyone lm wondering if anyone out there struggles with pulled muscles. I'm ...

Hidden

•3 years ago

8 Replies

Lip fillers

hi all…. Bit of a strange question tonight. Has anyone has lip fillers done after being diagnosed with et and I’m peg? X

hi all…. Bit of a strange question tonight. Has anyone has lip fillers done aft...

Dazakella2010

•3 years ago

7 Replies

Covid vulnerability

Has anyone been offered the new infusion to boost immune system against covid 19

Has anyone been offered the new infusion to boost immune system against covid 19...

Bield

•3 years ago

4 Replies

Shingrix jab

Afternoon peeps, Well all went well with tooth extraction on Friday, took me ages to get to dentist due to roads being blocked with downed trees damaged buses,...

Afternoon peeps, Well all went well with tooth extraction on Friday, took me age...

Superwoman

•3 years ago

13 Replies

Do you have any supplements you think helped JAK2+ patients?

I’m just curious is there any supplements that is not advised or would help a JAK2+ patient, is Omega 3 and normal multivitamins okay? I’m just concern that...

I’m just curious is there any supplements that is not advised or would help a JA...

livelovelaugh1992

•3 years ago

10 Replies

New here, expecting diagnosis of ET next week. What to expect?

32M Hadn’t seen a doctor in years, wife and I had baby coming and I thought it was time to take care of myself. Found a great primary care who ran CBC as...

32M Hadn’t seen a doctor in years, wife and I had baby coming and I thought it w...

Jaffar21342

•3 years ago

34 Replies

Skin rash

Has anyone suffered with skin rash on hydroxycarbamide? My consultant says it’s not related but I’ve only had since being on hydroxycarbamide red rash on...

Has anyone suffered with skin rash on hydroxycarbamide? My consultant says it’s ...

PhilReade

•3 years ago

19 Replies

My Journey Begins

Had my 1st Besremi dose yesterday. I did it at Drs office but had to stick myself since it is patient supplied meds. I know zero about needles except they...

Had my 1st Besremi dose yesterday. I did it at Drs office but had to stick myse...

EPguy

•3 years ago

42 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2022

MPN Progression Webinar recording

Mpn specialist

MPN specialist

Switch from HU to Pegasys - update 3.0

Ropeginterferon

Progression to PV

Bruise

Dual Mutation

Varicose veins

Pneumococcal vaccination

Anyone attend the call today? : MPN Progression: What We Know and What We Hope to Learn

Contra indicators with piriteze

Newly Diagnosed PV

Experiences giving birth with MPN?

ET

Covid Restrictions Lifted - Rant

Aspirin as a painkiller??

Disappointed

JAKAFI not working

European Besremi legal tussle continues

Ibuprofen

Instow1

Regular Pulled Muscles

Lip fillers

Covid vulnerability

Shingrix jab

Do you have any supplements you think helped JAK2+ patients?

New here, expecting diagnosis of ET next week. What to expect?

Skin rash

My Journey Begins

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