Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for November 2023

Ruxolitinib and skin cancers

Hi. I’ve just seen that ruxolitinib has now been approved for PV, which is great, BUT do take care of sun exposed skin. Rux can trigger really nasty...

Hi. I’ve just seen that ruxolitinib has now been approved for PV, which is great...

Gipsy123

•6 months ago

16 Replies

HbA1c : Diabetic!! Does PV/HU affect blood sugar?

Male 67, PV for 10 years. Asymptomatic .Taking aspirin and 500mg Hydroxyurea daily.Feel great. I have recently been declared "diabetic" with an A1c level of...

Male 67, PV for 10 years. Asymptomatic .Taking aspirin and 500mg Hydroxyurea dai...

Innessant

•6 months ago

15 Replies

JAK2 Mutation Analysis (Quest Labs - USA)

Has anyone gotten their JAK2 Mutation Analysis done in Quest Labs in the US? Test is positive for JAK2 mutation. There is a mutation frequency line item in...

Has anyone gotten their JAK2 Mutation Analysis done in Quest Labs in the US? Te...

shirl_acs

•6 months ago

2 Replies

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Elevated Cholesterol

Hello, Just had my cholesterol results back and they are quite elevated. Just wondering whether anyone else has elevated Cholesterol and just taking Aspirin...

Hello, Just had my cholesterol results back and they are quite elevated. Just...

Carol0925

•6 months ago

2 Replies

When is the Edinburgh MPN day happening?

Hi I missed out on the London MPN day, but I’ve seen a reference in MPN Voice to an Edinburgh day coming up in early Dec: is it happening, and how can I...

Hi I missed out on the London MPN day, but I’ve seen a reference in MPN Voice t...

Rachelthepotter

•6 months ago

7 Replies

Aspirin question

Hi, I am off 75mg aspirin from 5 days ago as getting a BMB on Thursday but noticed at nighttime a feeling similar to panic attack, had this also 2 days ago...

Hi, I am off 75mg aspirin from 5 days ago as getting a BMB on Thursday but noti...

NickyRobinson

•6 months ago

19 Replies

Hydroxycarbimide to Ruxolitinib - 4 weeks on....

Jak2 pos PV, nine years on hydroxy and venisections... Started Rux 4 weeks ago, continuing with Hydroxy at the same time. I had a venesection booked for day...

Jak2 pos PV, nine years on hydroxy and venisections... Started Rux 4 weeks ago, ...

AirconBob

•6 months ago

8 Replies

Besremi Question

Hello all, I have been on Besremi therapy for a year and 3 months. My numbers have shown nice improvement. I started at a burden of 78% and down 32% all other...

Hello all, I have been on Besremi therapy for a year and 3 months. My numbers h...

josup26

•6 months ago

8 Replies

On Pegasys 180 for 2 months.

Had been on Hydroxyurea combined with pegasysThen 3 months ago after 33 to 90 to 135 I was upped to 180 1x per week. Hu was discontinued. Now latest platlet...

Had been on Hydroxyurea combined with pegasysThen 3 months ago after 33 to 90 t...

ETMF

•6 months ago

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sjogens?

I have post PV Myelofibrosis. When I was dx with PV I took Pegasys from April 22 @ 45mg then 60mg then 90mg fortnightly. (On Jakavi since August 23) So took...

I have post PV Myelofibrosis. When I was dx with PV I took Pegasys from April ...

Yanico

•6 months ago

4 Replies

Crippling stomach pain, etc. post C/T Scan, Iodine contrast, etc., M.E,/MCAS reactions?

Crippling stomach pain, etc. post CT scan, iodine contrast, etc., M.E,/MCAS reactions? I have been having really bad stomach pains, reflux, etc for some years...

Crippling stomach pain, etc. post CT scan, iodine contrast, etc., M.E,/MCAS reac...

Frenetik2013

•6 months ago

2 Replies

new blood tests

Hct is lower again to 37 and Hgb 11.5, iron panel still anemic. New Blood Test. Anion Gap. Normal range per lab. 6-22 My test result was 3 Anyone have...

Hct is lower again to 37 and Hgb 11.5, iron panel still anemic. New Blood Test...

Pickleball11

•6 months ago

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Thank You

A big thank you to Professor Harrison, her colleagues and fellow clinicians, the staff at MPN voice and all those who contributed to the in person meeting in...

A big thank you to Professor Harrison, her colleagues and fellow clinicians, the...

artydutch

•6 months ago

4 Replies

London Conference

A wonderful & well planned conference I London yesterday . So pleased I made the journey. Amazing & inspiring speakers. Excellent lunch provided &...

A wonderful & well planned conference I London yesterday . So pleased I made ...

Exeter21

•6 months ago

13 Replies

momolinateb

Hello, just wondering if any of you are taking momolinateb, and if so how you getting on with this xx

Hello, just wondering if any of you are taking momolinateb, and if so how you ...

lynda1ann

•6 months ago

5 Replies

Just had a routine blood test from my GP

I know its possibly anemia... No wonder I have been even more tired etc.. Another repeat test in a month.. PV JAK2+ Pega, aspirin. Can they give...

I know its possibly anemia... No wonder I have been even more tired etc.. ...

shiftzz

•6 months ago

3 Replies

Managing my MPN

Hi all, advice would be appreciated. Had my ET diagnosis around 2+ years. Was being treated with Pegasus injections which kept my levels stable at 400. Had...

Hi all, advice would be appreciated. Had my ET diagnosis around 2+ years. Was ...

Pappafraser

•6 months ago

11 Replies

Progress (indirect) on genome editing for Jak2 PV

This was posted by member Steve_Essex a while ago. https://healthunlocked.com/mpnvoice/posts/149607977/gene-editing-jak2 "Inventors at Stanford's Porteus lab...

This was posted by member Steve_Essex a while ago. https://healthunlocked.com/m...

EPguy

•6 months ago

3 Replies

in need of MPN specialist

I live in Hawaii where there are no MPN specialists. I would like to be able to have my consultation remotely and I just found out that California no longer...

I live in Hawaii where there are no MPN specialists. I would like to be able to...

Island-Lady

•6 months ago

6 Replies

Raised MCH & CRP

Hi all I have a question is raised MCH and CRP anything to be concerned about please Just got my latest blood results and they are both a bit high Thank you...

Hi all I have a question is raised MCH and CRP anything to be concerned about pl...

Dottiedot

•6 months ago

3 Replies

Looking for a new hematologist

Hi, Things have been hectic and it has been a while since I've posted. And one of the things making life hectic is a recent move. Can anyone recommend a...

Hi, Things have been hectic and it has been a while since I've posted. And on...

nightshadow

•6 months ago

2 Replies

Should I have a dental implant or bridge ?

I have PV (JAK2 Positive) my disease is very well controlled on 45mcgs of peginterferon alpha-2A every 8weeks. I wondered if anyone knows if it is safe...

I have PV (JAK2 Positive) my disease is very well controlled on 45mcgs of pegi...

dishcell

•6 months ago

16 Replies

First in person MPN meeting 18th November

Warm regards to our community. Tomorrow I’m going to my first Living With MPN’s meeting in London. I’m JAK2 V617F Essential Thrombocythemia diagnosed 2016...

Warm regards to our community. Tomorrow I’m going to my first Living With MPN’s ...

Buddhability

•6 months ago

8 Replies

Aspirin bleeding problems

hi everyone, Just wanted to get a little feedback if possible. I had an issue about 10/12 weeks ago where I had a bleed from my back passage (already posted...

hi everyone, Just wanted to get a little feedback if possible. I had an issue ...

Grendall

•6 months ago

12 Replies

blotchiness

this blotchy rash has been lurking on me since March. It doesn’t itch or hurt, it can flare up and down, but always there is a ‘shadow’ of where it’s been....

this blotchy rash has been lurking on me since March. It doesn’t itch or hurt, i...

Peachjoy

•6 months ago

5 Replies

thromboelastogram

Has anyone ever heard anything about a test called a "thromboelastogram"? I had unrelated knee surgery the other day. Discussed my PV with the...

Has anyone ever heard anything about a test called a "thromboelastogram"? I ...

ERei

•6 months ago

1 Reply

Immune Responses + Autoimmune Myelofibrosis

There were some posts a few weeks ago on adverse immune responses after vaccination for people using interferons. I had this experience while transitioning...

There were some posts a few weeks ago on adverse immune responses after vaccinat...

LongETinUS

•6 months ago

15 Replies

AST, ALT high

Hi, while been on Interferon journey my AST and ALT rocketed up high to 64 for ast and 92 for alt.Is this change a concern ? How can I maintain liver enzymes......

Hi, while been on Interferon journey my AST and ALT rocketed up high to 64 for a...

kamiilos

•6 months ago

5 Replies

Help with contact details for a specialist I can contact near rotherham I have pv jak2 positive I am only 47.

I need some help only ever been seen once by my doctor and that was over 2 years ago when diagnosed. I have bloods every 10 week. Then day after a nurse...

I need some help only ever been seen once by my doctor and that was over 2 years...

Mandz12

•6 months ago

15 Replies

Just Diagnosed with MPN - So I have a few ?’s

I keep reading the different forms of MPN’s are progressive. 1) If so, what is the order? (From earliest/least severe, to most advanced/severe) 2) Is there...

I keep reading the different forms of MPN’s are progressive. 1) If so, what is...

hsdale3

•6 months ago

3 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2023

Ruxolitinib and skin cancers

HbA1c : Diabetic!! Does PV/HU affect blood sugar?

JAK2 Mutation Analysis (Quest Labs - USA)

Elevated Cholesterol

When is the Edinburgh MPN day happening?

Aspirin question

Hydroxycarbimide to Ruxolitinib - 4 weeks on....

Besremi Question

On Pegasys 180 for 2 months.

sjogens?

Crippling stomach pain, etc. post C/T Scan, Iodine contrast, etc., M.E,/MCAS reactions?

new blood tests

Thank You

London Conference

momolinateb

Just had a routine blood test from my GP

Managing my MPN

Progress (indirect) on genome editing for Jak2 PV

in need of MPN specialist

Raised MCH & CRP

Looking for a new hematologist

Should I have a dental implant or bridge ?

First in person MPN meeting 18th November

Aspirin bleeding problems

blotchiness

thromboelastogram

Immune Responses + Autoimmune Myelofibrosis

AST, ALT high

Help with contact details for a specialist I can contact near rotherham I have pv jak2 positive I am only 47.

Just Diagnosed with MPN - So I have a few ?’s

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