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MPN Voice

10,445 members • 14,398 posts

All posts for October 2023

Newly diagnosed Myelofibrosis Stage 2

I was diagnosed with ET JAK2+ in 2016. I was on HU for many years but it started to lose its effectiveness. In May this year I had a bone marrow biopsy and...

I was diagnosed with ET JAK2+ in 2016. I was on HU for many years but it starte...

•7 months ago

Nervous about a Bone Marrow Biopsy tomorrow

Hi, this is my first post. I have a bone marrow biopsy tomorrow and the nerves have just kicked in. I've heard that it's painful but is that the case for...

Hi, this is my first post. I have a bone marrow biopsy tomorrow and the nerves h...

Fivecatsandcounting

•7 months ago

E.T. JAK 2 at 90 years of age

Actually I’m only 89 years 5 months, but on September 1st I was diagnosed with the above. A general blood test showed platelets had risen from 446 last...

Actually I’m only 89 years 5 months, but on September 1st I was diagnosed with ...

•7 months ago

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Which other drugs are usually used alongside ruxolitinib when it's not having enough effect on its own?

I've been on ruxolitinib for 4 years for my pv. My white count has always been stubbornly high. Consultant has always brushed it off saying it goes with the...

I've been on ruxolitinib for 4 years for my pv. My white count has always been s...

•7 months ago

5th time lucky

•7 months ago

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And this

Wouldn't let me send photo before

Wouldn't let me send photo before

•7 months ago

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Recipe

•7 months ago

Update on my jak2 AB

Good news! A quick update on my jak2 alle burden. It has dropped from 79% to 40% only within 4 month! Does that mean I do great on besremi? I have tet2...

Good news! A quick update on my jak2 alle burden. It has dropped from 79% to 40...

•7 months ago

sleep issues

anyone struggling with sleep I would suggest lavender oil, lavender balm and quiet night herbal tablet. I have struggled with sleep for months and tried these...

anyone struggling with sleep I would suggest lavender oil, lavender balm and qui...

•7 months ago

covid vaccination

Thankyou to everyone who replied to my previous post . Most people seem to be having the covid booster . It isn’t the initial jab that bothers me but what it’s...

Thankyou to everyone who replied to my previous post . Most people seem to be ha...

•7 months ago

Celluitis come back.

I had Celluitis a month ago on my neck, was prescribed two lots of 28 x 500mg Flucloxacillin(realy don't want them ever again, awful reactions, very low mood,...

I had Celluitis a month ago on my neck, was prescribed two lots of 28 x 500mg Fl...

•7 months ago

Will reducing hydroxycarbemide weekly dosage help with hair loss?

Hello everyone I have ET and have been taking 9 tablets a week for most of the last 18 months. My platelets have now been reduced to 390 from 695 at...

Hello everyone I have ET and have been taking 9 tablets a week for most of th...

•7 months ago

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