Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,842 posts

All posts for June 2023

Travel insureance from UK to Greece with MF

Hi all, just a bit of help required please. me and my wife are off to Greece from the UK in August for a week, I have started looking at travel insurance and...

Hi all, just a bit of help required please. me and my wife are off to Greece fro...

Flyingsteamer

•1 year ago

11 Replies

Blood pressure treatment - Irbesartan

Hi all, Its me again with yet another problem. I have Jak 2 positive ET controlled on hydroxycarbamide, aspirin and rivaroxaban. I went to GP to-day to get...

Hi all, Its me again with yet another problem. I have Jak 2 positive ET control...

Jelbea

•1 year ago

6 Replies

Inflammation/ platelets

Does inflammation increase platelets? I’ve recently had my inflammation markets tested and my CRp is 4 top of range is 5 My ESR is 53 and top of range is 20...

Does inflammation increase platelets? I’ve recently had my inflammation markets...

130396

•1 year ago

6 Replies

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Gallbladder Removal?

Hey MPN-ers 😊 It’s recently become recommended for me to have my gallbladder removed. Not really in any pain but sporadic discomfort and upon ultrasound it...

Hey MPN-ers 😊 It’s recently become recommended for me to have my gallbladder ...

KyleeR

•1 year ago

19 Replies

Hydroxy 500 Side effects and other options please!

Will get final results from BMB in a week. JAK 2 mutation and slightly elevated platelets. During the interim , the MPN specialist prescribed hydroxy. After...

Will get final results from BMB in a week. JAK 2 mutation and slightly elevated ...

JAB6

•1 year ago

54 Replies

Anagrelide

My MPN specialist is considering starting me in Anagrelide for side effects (headaches, vision disturbances,, Etc). Has anyone had any luck with Anagrelide...

My MPN specialist is considering starting me in Anagrelide for side effects (hea...

Bears23

•1 year ago

12 Replies

Petechial rash

I have Jak2 positive ET. I was diagnosed two years ago and I take Hydroxycarbamide 500 mg daily. My blood levels settled down very well on this treatment -...

I have Jak2 positive ET. I was diagnosed two years ago and I take Hydroxycarbam...

Jelbea

•1 year ago

8 Replies

Operation cancelled

My operation was cancelled for a few reasonsand because of Polycythaemia . The Dr wanted to use Tranexamic Acid to reduce bleeding. Does any one know if...

My operation was cancelled for a few reasonsand because of Polycythaemia . The...

FXT1966

•1 year ago

2 Replies

Now a blood clot on my lung 🫁

Been on Peg Injections for over a year and now after 🫁 lungs hurting, been diagnosed today with blood clot on my lung 🫁 today Wondered why my lungs were...

Been on Peg Injections for over a year and now after 🫁 lungs hurting, been diag...

Pappafraser

•1 year ago

11 Replies

PS100 supplement

Hi folks. I hope you are all enjoying this glorious weather(those in UK,lucky to have sunshine) Looking for advice. A friend recommended PS100 supplement...

Hi folks. I hope you are all enjoying this glorious weather(those in UK,lucky t...

LittleLuna

•1 year ago

3 Replies

enquiry

Haven't posted for a while, but always read the helpful information shared. Just not much good at writing. A quick question...are dog was scheduled for a...

Haven't posted for a while, but always read the helpful information shared. Just...

Lorrmac

•1 year ago

18 Replies

Ruxolitinib and Hydroxycarbamide

Hi everyone as I posted befor I was on hydroxycarbamide for 16 years. I got worse during covid and was not being seen by haematology only phone calls. My...

Hi everyone as I posted befor I was on hydroxycarbamide for 16 years. I got wors...

Mudmaker

•1 year ago

13 Replies

Some clarification on just how much cover I need from the sun please?

Hi, I know that that Hydrea says to keep protected from the sun tho I wondered to what extent. I’ve seen on this forum that some people completely cover up...

Hi, I know that that Hydrea says to keep protected from the sun tho I wondered ...

Pachena

•1 year ago

26 Replies

hematocrit 23 - blood transfusion

My husband’s mylofrobisis has progressed to high risk . He was just put on jakafi at 10mg twice a day for about a month now He feels much better after...

My husband’s mylofrobisis has progressed to high risk . He was just put on jaka...

Bainbridge

•1 year ago

27 Replies

Pegasys Reaction?

I took my first dose of 45mcgs of Pegasys Sunday evening with no signs of any side effects. Woke up the next day (yesterday) and about 9am I started getting...

I took my first dose of 45mcgs of Pegasys Sunday evening with no signs of any si...

russkatt

•1 year ago

10 Replies

Claire Harrison

Hi, I know some of you have contacted Claire Harrison to get second opinions etc and I wondered if someone could furnish me with her email address. Many...

Hi, I know some of you have contacted Claire Harrison to get second opinions etc...

Janis12

•1 year ago

11 Replies

ET and HRT

HiHas anyone with ET also taken HRT. I was prescribed Oestrogen pessaries to treat post menopausal bladder issues , I will obviously check with haematologist,...

HiHas anyone with ET also taken HRT. I was prescribed Oestrogen pessaries to tre...

jodary

•1 year ago

40 Replies

Hormones?

Anyone out there on birth control or any type of hormone? I think between a phlebotomy I had about a month ago and Besremi have thrown my hormones off. I...

Anyone out there on birth control or any type of hormone? I think between a phl...

KLCTJC

•1 year ago

7 Replies

Visit to the dentist

Can anyone give me information/advice please. I am on daily aspirin and 500mg x 10 tablets weekly as I have ET. I am seeing a new dentist as my previous one...

Can anyone give me information/advice please. I am on daily aspirin and 500mg x...

Ozziepig

•1 year ago

15 Replies

Update 7.6

Happy to say that the news remains favorable on all fronts. I reviewed my PV status with the MPN Specialist at Johns Hopkins. I remain in a complete...

Happy to say that the news remains favorable on all fronts. I reviewed my PV ...

hunter5582

•1 year ago

51 Replies

Jakafi and constipation

Hi all...reaching out to those of you a on Jakafi and are experiencing constipation. I'm actually doing really well on it so far, but the constipation is...

Hi all...reaching out to those of you a on Jakafi and are experiencing constipa...

K-itty

•1 year ago

16 Replies

Pegasys Injection Help

Anyone use insulin needles to inject Pegasys? It appears to be exactly the same other than it says "units" where my prescription calls out "mls". However they...

Anyone use insulin needles to inject Pegasys? It appears to be exactly the same ...

russkatt

•1 year ago

6 Replies

JAK2-Besremi big drop

With the slight increase in Besremi from 150 to 180-ish see previous post: https://healthunlocked.com/mpnvoice/posts/149599808/besremi-update-15-months...

With the slight increase in Besremi from 150 to 180-ish see previous post: https...

Elizka

•1 year ago

20 Replies

gene editing Jak2

Hi, just came across this article, apologies if previously been shared… it outlines research at Stanford to use gene editing techniques to identify, cut...

Hi, just came across this article, apologies if previously been shared… it o...

Steve_Essex

•1 year ago

27 Replies

Very high ACA IgM

Saw a new MPN doc couple weeks ago who found I have a very high ACA IgM, 104 was my value and reference range is 0 to 12. Also have an elevated LDH. Suspected...

Saw a new MPN doc couple weeks ago who found I have a very high ACA IgM, 104 was...

George1976

•1 year ago

10 Replies

Besremi Update 15 Months

Hi Community! I titrated my Besremi to 180 from 150 over the last three doses (a bit of a story there for another time). I assumed I'd need a phlebotomy as...

Hi Community! I titrated my Besremi to 180 from 150 over the last three doses ...

Elizka

•1 year ago

8 Replies

Vertigo and ET?

Is vertigo a symptom of ET by any chance?

Garstongal

•1 year ago

14 Replies

Low grade fever, Besremi, pre-PMF

I’m 42 with pre-fibrotic MF (CALR, post-ET), taking 50mcg Besremi. Platelets have decreased from 1000 to just above 400 on this therapy over the last ~2......

I’m 42 with pre-fibrotic MF (CALR, post-ET), taking 50mcg Besremi. Platelets hav...

besremiso

•1 year ago

6 Replies

lowered platelets

After discovering I had jak2 mutation and diagnosed with ET five months ago my platelets have been around 600 at every monthly blood draw. I am taking aspirin...

After discovering I had jak2 mutation and diagnosed with ET five months ago my p...

Highplatelets

•1 year ago

10 Replies

Essential thrombysemia, hydroxy, and extreme fatigue

I was diagnosed with ET early last year. It was picked up on a pre op blood test. I have been on a steep learning curve since the diagnosis. As a naïve...

I was diagnosed with ET early last year. It was picked up on a pre op blood tes...

Bantams123

•1 year ago

26 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2023

Travel insureance from UK to Greece with MF

Blood pressure treatment - Irbesartan

Inflammation/ platelets

Gallbladder Removal?

Hydroxy 500 Side effects and other options please!

Anagrelide

Petechial rash

Operation cancelled

Now a blood clot on my lung 🫁

PS100 supplement

enquiry

Ruxolitinib and Hydroxycarbamide

Some clarification on just how much cover I need from the sun please?

hematocrit 23 - blood transfusion

Pegasys Reaction?

Claire Harrison

ET and HRT

Hormones?

Visit to the dentist

Update 7.6

Jakafi and constipation

Pegasys Injection Help

JAK2-Besremi big drop

gene editing Jak2

Very high ACA IgM

Besremi Update 15 Months

Vertigo and ET?

Low grade fever, Besremi, pre-PMF

lowered platelets

Essential thrombysemia, hydroxy, and extreme fatigue

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