Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for February 2023

Seeing an MPN Specialist tomorrow!

I have an appointment at Stanford with an MPN Specialist tomorrow. Going on 5 years with ET+CALR and currently taking aspirin and 2 pills of Hydrea daily AND...

I have an appointment at Stanford with an MPN Specialist tomorrow. Going on 5 ye...

•1 year ago

Another post singing the praises of Guys Hospital and Prof H

Hi All- I posted last week asking for help with what questions I should ask at my first appointment at Guys. This is just a follow-up firstly to say thank you...

Hi All- I posted last week asking for help with what questions I should ask at m...

•1 year ago

Please forgive my absence

it feels like forever since I have posted but I do read everyone’s post everyday with interest. I have been through a particularly hard 3 years and have felt...

it feels like forever since I have posted but I do read everyone’s post everyday...

•1 year ago

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Covid finally got me!

After nearly 3 years of dodging Covid and 6 injections, the latest variant has finally got me! Just mild symptoms so far but waiting to hear from NHS re...

After nearly 3 years of dodging Covid and 6 injections, the latest variant has f...

•1 year ago

aspirin

does anyone on here use gastric coated aspirin I have just read it not very efficient

does anyone on here use gastric coated aspirin I have just read it not very effi...

•1 year ago

Meaning of LDH

Hi everyone,Reading other members'posts i noticed LDH being mentioned but I can't work out what's the implication of high/low level LDH. I checked my results...

Hi everyone,Reading other members'posts i noticed LDH being mentioned but I can'...

•1 year ago

What actually causes weight gain?

I read that some of us on hydroxycarbamide, who are also JAK2 positive (self included), have experienced a weight gain of around 3 - 6 kg...or more. This has...

I read that some of us on hydroxycarbamide, who are also JAK2 positive (self inc...

•1 year ago

Constant Worry - It's Me Again

So, I reread the bmb report after speaking with my hematologist last week. The diagnosis favors ET taking into account the differential diagnosis of PMF and...

So, I reread the bmb report after speaking with my hematologist last week. The d...

•1 year ago

Change from PV?

I was diagnosed 3 years ago with PV due to being Jak2+ & having an elevated hematocrit. I was later diagnosed as MPN - U based on my April 2022 BMB. I had no...

I was diagnosed 3 years ago with PV due to being Jak2+ & having an elevated hema...

•1 year ago

Post SCT haematomachrosis

My now 6 monthly bloods done last year revealed high ferritin. I subsequently had 6 venesections, 1 a month. My follow up, delayed by COVID, revealed a still...

My now 6 monthly bloods done last year revealed high ferritin. I subsequently ha...

•1 year ago

Besremi dosing research

It shows Besremi works better in 250-350-500 mcg in a month. [The response outcomes observed in multiple clinical trials of ropeginterferon alfa-2b confirm...

It shows Besremi works better in 250-350-500 mcg in a month. [The response outc...

•1 year ago

Getting Specialist Help

Hi everyone, I am really hoping I can get a bit of advice on my situation. I was diagnosed with ET Jak2 positive just over a year ago and being over 60 I was...

Hi everyone, I am really hoping I can get a bit of advice on my situation. I w...

•1 year ago

Update 7.4

Just met with my regular hematologist for a follow up. The CBC looks good, with HCT dropping a bit more to 43.0%. All the other numbers look good. We will...

Just met with my regular hematologist for a follow up. The CBC looks good, with...

•1 year ago

No meds except warfrin

Hi is there anyone with PV been on hydroxy then pegusus interferon but due to negative side effects of both of these are currently taking warfrin only.Adiewon

Hi is there anyone with PV been on hydroxy then pegusus interferon but due to ne...

•1 year ago

Peg Interferon 2b abd Hydroxy

Is anybody taking both together or can this happen when going to interferon from hydroxy ?

Is anybody taking both together or can this happen when going to interferon fro...

•1 year ago

Another newly diagnosed

Hi folks, I was told by a haematologist last week that I tested positive for JAK2 and that I have an MPN. It's taken until now to get over the shock. I have...

Hi folks, I was told by a haematologist last week that I tested positive for JA...

•1 year ago

Diagnosis: "Favors Essential Thrombocythemia"

So this is good news. Except for one thing. My bmb did show some "mild to moderate reticulin fibrosis. Nevertheless the diagnosis favors the ET. My...

So this is good news. Except for one thing. My bmb did show some "mild to moder...

•1 year ago

Drug interactions/conflicts

Hi everyone I am Coeliac and also have Essential Thrombocythemia for which I take Hydroxycarbamide. Amongst the many side effects from HC my regular blood...

Hi everyone I am Coeliac and also have Essential Thrombocythemia for which I ...

•1 year ago

Anxiety attack

My ET is giving me anxiety attack today. I had an accident the other day, fractured my knee and now I have too much time think while lying in bed all day....

My ET is giving me anxiety attack today. I had an accident the other day, fractu...

•1 year ago

3rd picture of booklet

•1 year ago

2nd picture of booklet

•1 year ago

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MPN scoring booklet

I’ve been sent this booklet today to record my symptoms , after my diagnosis of pre-mf. I’m going to try to put 3 pictures of it on. My appointment isn’t until...

I’ve been sent this booklet today to record my symptoms , after my diagnosis of ...

•1 year ago

Cytokines and MPN

I read the different Post here almost everyday and I am amazed and very great greatful about how much I have learn from everyone.. Thank you! I do have a...

I read the different Post here almost everyday and I am amazed and very great g...

•1 year ago

Globulin Testing

Hey team 👋🏼 Can anyone share any information or experiences on Globulin Testing? My levels seem to be rising steadily, is this a normal by product of ET...

Hey team 👋🏼 Can anyone share any information or experiences on Globulin Test...

•1 year ago

Jakavi

Hi all hope every one is well. I have been on peg for 4 months with increased doses but didn't work. So after seeing my haemotoligist this morning she...

Hi all hope every one is well. I have been on peg for 4 months with increased do...

•1 year ago

Detox

I had an email back from Professor Harrison of Guy's. ,secretary. The Prof. Said I should let my local team know plan and didn't express concern re...

I had an email back from Professor Harrison of Guy's. ,secretary. The Prof. ...

•1 year ago

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