Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,731 posts

All posts for October 2023

Anagrelide advice

Hello people Soz this is a long one! - haven't posted for some time and hoping for some thoughts. I'm ET with NMZ lymphoma as added bonus and on hydroxy for...

Hello people Soz this is a long one! - haven't posted for some time and hoping ...

amhann

•10 months ago

4 Replies

The new CALR drug, any new news?

I heard there is a new CALR drug coming for those of us with this type of MPN. Has anyone heard about it recently? I thought trials were beginning soon but...

I heard there is a new CALR drug coming for those of us with this type of MPN. H...

George1976

•10 months ago

6 Replies

High dose aspirin

I was put on daily full dose (325mg) aspirin with my hydroxyurea back in February for my ET. I am 74 years old. Is anyone else on this much daily aspirin?

I was put on daily full dose (325mg) aspirin with my hydroxyurea back in Februar...

jewelmaker

•10 months ago

2 Replies

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Shingles jab

I may be the last person to know this, but.......having been told to avoid the shingles jab as it contained a live virus, I've just been told that the NHS no...

I may be the last person to know this, but.......having been told to avoid the s...

Ovingite

•10 months ago

7 Replies

Dry skin

Does anyone feel that Hydroxyurea causes your skin to dry out and wrinkle faster?

Does anyone feel that Hydroxyurea causes your skin to dry out and wrinkle faster...

Winchie

•10 months ago

35 Replies

Pain killers and Hip replacement

Can someone help please. My hospital says it is VERY HIGH RISK me having a hip replacement, which means I have been having cortisol injections in both hips...

Can someone help please. My hospital says it is VERY HIGH RISK me having a hip...

Hildrethbird

•10 months ago

15 Replies

Flu vaccine

Despite all the discussion and contraversy re autumn vaccinations I decided to take the plunge. Covid booster last Thursday, no problem.Flu vaccination...

Despite all the discussion and contraversy re autumn vaccinations I decided to t...

Pippapot

•10 months ago

11 Replies

Aspirin Question

Does anyone happen to know if it’s ok to take Excedrin, for a bad headache, when you have Essential Thrombocythemia & on Pegasys? Asking because I know there’s...

Does anyone happen to know if it’s ok to take Excedrin, for a bad headache, when...

Golfersmom

•10 months ago

5 Replies

statins!

I am wondering if anyone else here is taking statins? I have resisted until now but have given in. However, having read some of the side effects I wish I...

I am wondering if anyone else here is taking statins? I have resisted until now ...

Michali45

•10 months ago

68 Replies

Anemia & Aspirin

I'm on baby aspirin & HU. I've had 2 bouts of profound iron deficiency anemia in which the cause was never clearly identified (had 2 complete GI workups). I...

I'm on baby aspirin & HU. I've had 2 bouts of profound iron deficiency anemia i...

ERei

•10 months ago

7 Replies

MPN Nurse @ Guys Hospital

hi I’m looking to contact Clare?? Can’t remember her surname she is an MPN nurse who works closely with Professor Clare Harrison. I would appreciate if anyone...

hi I’m looking to contact Clare?? Can’t remember her surname she is an MPN nurs...

Brendaf

•10 months ago

4 Replies

THANKS TO EVERYONE

Much appreciate your replying to my cry of help. This is a general and sincere thanks to you all, for you know who you are. This Sunday I am having a full...

Much appreciate your replying to my cry of help. This is a general and sincere ...

Suzukigirl

•10 months ago

5 Replies

MPN Specialist

Re there any MPN specialists in Edmonton, Canada?

Lenten

•10 months ago

1 Reply

High Potency Fish Oil

Hello, is high potency fish oil contraindicated with ET+JAK2pos? Been researching and conflicting reviews etc. Just wondered if anyone takes it?

Hello, is high potency fish oil contraindicated with ET+JAK2pos? Been researchi...

Carol0925

•10 months ago

14 Replies

JAK2 Level

I don't know what my JAK2 level is. i was diagnosed thru gene testing..not BMB. Is the level in my normal bloodwork or is it an additional test? I want to...

I don't know what my JAK2 level is. i was diagnosed thru gene testing..not BMB....

Smoothie2020

•10 months ago

6 Replies

interesting

So far, Hifas da Terra has shown mushroom formulas to complement chemotherapy and radiation therapy by countering the side- effects of cancer, such as...

So far, Hifas da Terra has shown mushroom formulas to complement chemotherapy ...

Mostew

•10 months ago

4 Replies

Doctor wants me to start Hydrea

I am 44 years old. I was diagnosed with ET 3 years ago. My platelet count had been pretty steady at around 700, sometimes it would spike to mid 700s or up to...

I am 44 years old. I was diagnosed with ET 3 years ago. My platelet count had be...

JT1622

•10 months ago

27 Replies

Lots of Bruising

Hello everyone I hope you are having a good day I have ET, and started taking 2 baby aspirin and 500 mg daily of Hydroxyurea last March ('22) when my platelets...

Hello everyone I hope you are having a good day I have ET, and started taking 2 ...

IrishSetterLover

•10 months ago

4 Replies

Interesting company

I've just got their vitam c https://hifasdaterra.com/en/blog/category/news/

Mostew

•10 months ago

Be the first to reply

Coincidence or not?

After some female advice please. I am 45 and would like to know if anyone has experienced the same as me please. Diagnosed ET May 2017, started on...

After some female advice please. I am 45 and would like to know if anyone has e...

beckyluck

•10 months ago

7 Replies

nucleated red blood cells

My NRBC count has always been 0 but this month it is at 0.01. I’m a little worried as I know anything above 0 is considered unusual and my haem once told me...

My NRBC count has always been 0 but this month it is at 0.01. I’m a little worri...

Timjonze

•10 months ago

15 Replies

Surgery completed!

I had my complete knee replacement this morning and was home 6 hours later, have just a small amount of pain but the block is still on. Lost just 200 mil of...

I had my complete knee replacement this morning and was home 6 hours later, have...

Whitehair51

•10 months ago

8 Replies

MDS/MPN

Hi I was diagnosed 9 years ago with MDS/MPN overlap .I have never heard of this condition completely stunned.Only now am I facing up to it .Has anyone else had...

Hi I was diagnosed 9 years ago with MDS/MPN overlap .I have never heard of this ...

Polish1

•10 months ago

9 Replies

NEWBIE

I have chronic myeloproliferative disease - between ET & prefibrotic myelofibrosis, on HU 500mg per day and 1000mg on Sundays, plus 75mg Aspirin. This is of...

I have chronic myeloproliferative disease - between ET & prefibrotic myelofibros...

JOL13

•10 months ago

7 Replies

PV and essential oils

Hi allJust wondering if I can take essential oils to help with my mood and menopause whilst taking interferon for PV. Anyone any experience of this and whether...

Hi allJust wondering if I can take essential oils to help with my mood and menop...

MazzaP74

•10 months ago

8 Replies

Jak2 now "Undetectable"

Hi I was diagnosed with Jak2 positive PV back in May 2019, after months of venesections I was put on Peginterferon in Nov 2019. The first year I was 0n 45mg...

Hi I was diagnosed with Jak2 positive PV back in May 2019, after months of ven...

WindyGale

•10 months ago

10 Replies

Painkiller advice for Anagrelide headaches.

Started Anagralide 7 days ago, & took horrendous headache today. Took Solpadeine Max, & this helped, but only to be used for 3 days, & are expensive. Can my GP...

Started Anagralide 7 days ago, & took horrendous headache today. Took Solpadeine...

Didgeridoo2

•10 months ago

4 Replies

Hospital blood test and gp blood test

I have blood tests every 3 months at QE, they only seem to test for platelets and certain tests. Had a 12 month general blood test at GP last month, they have...

I have blood tests every 3 months at QE, they only seem to test for platelets an...

Robeets_33

•10 months ago

16 Replies

Itching

Well this is my first post, I've recently been diagnosed with Etjac2 after 10 years of raised platelets (but under the nhs sussex threshold) .Last year I...

Well this is my first post, I've recently been diagnosed with Etjac2 after 10 ye...

Spanelmad

•10 months ago

8 Replies

A very special interview with Dr Patrick Harrington regarding Covid vaccines and MPN patients

In this interview Dr Patrick Harrington, Consultant Haematologist, Guy’s & St Thomas’ Hospital, talks to Nona about Covid vaccines for MPN patients, he starts...

In this interview Dr Patrick Harrington, Consultant Haematologist, Guy’s & St Th...

Mazcd

Partner•10 months ago

10 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2023

Anagrelide advice

The new CALR drug, any new news?

High dose aspirin

Shingles jab

Dry skin

Pain killers and Hip replacement

Flu vaccine

Aspirin Question

statins!

Anemia & Aspirin

MPN Nurse @ Guys Hospital

THANKS TO EVERYONE

MPN Specialist

High Potency Fish Oil

JAK2 Level

interesting

Doctor wants me to start Hydrea

Lots of Bruising

Interesting company

Coincidence or not?

nucleated red blood cells

Surgery completed!

MDS/MPN

NEWBIE

PV and essential oils

Jak2 now "Undetectable"

Painkiller advice for Anagrelide headaches.

Hospital blood test and gp blood test

Itching

A very special interview with Dr Patrick Harrington regarding Covid vaccines and MPN patients

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