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MPN Voice

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PV….is cupping contraindicated?

Hi All I hope everyone is well and enjoying whatever sunshine some of us are getting now. I have not been on here in a while. Life & work is manic but plan...

Hi All I hope everyone is well and enjoying whatever sunshine some of us are ge...

LittleLuna

•2 hours ago

2 Replies

ET + Anagrelide

Is anyone taking Angrelide and dealing with side effects? I have ET+CALR, became resistant to Hydrea and couldn't tolerate the side effects of Interferon. Now...

Is anyone taking Angrelide and dealing with side effects? I have ET+CALR, became...

Zeppelin11

•3 hours ago

3 Replies

My SCT journey continues

Hi all, not posted for a while but I am now at day+33 and finally starting to feel a bit normal again. I had very bad mucositis following sct and then problems...

Hi all, not posted for a while but I am now at day+33 and finally starting to fe...

Flyingsteamer

•7 hours ago

6 Replies

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Neurology appointment

So grateful I get to push one thing out for a year! I still think my neurologist always looks so confused when I see him.😆. Showed me my scan and that one...

So grateful I get to push one thing out for a year! I still think my neurologis...

KLCTJC

•10 hours ago

2 Replies

Tumeric/circumin

Good morning to you all. I wonder if anyone can help with my query. I saw professor Harrison two weeks ago and among things discussed was joint and bone...

Good morning to you all. I wonder if anyone can help with my query. I saw prof...

Oscarsboy

•13 hours ago

6 Replies

does anyone out there have histamine intolerance?

hi I’ve just changed from hydroxicarbamide to interferon. Seems ok, fingers crossed, but I also have histamine intolerance amd the absence of Hydroxicarbamide...

hi I’ve just changed from hydroxicarbamide to interferon. Seems ok, fingers cro...

Loubprv

Volunteer•1 day ago

6 Replies

Stem cell transplant

I haven’t posted for a while as things have gotten very complicated for me recently my partner was diagnosed with stomach cancer and around the same time I ran...

I haven’t posted for a while as things have gotten very complicated for me recen...

Leighcox85

•1 day ago

16 Replies

Migraine

Last month have been taking 2 hydro tablets Saturday and Sunday and still 1 rest of week. My problem is have started to get white lights flashing in my eyes....

Last month have been taking 2 hydro tablets Saturday and Sunday and still 1 rest...

mag123ben

•1 day ago

3 Replies

my recent absence from this site

maybe some of you have noticed I’ve been absent from this site of late well after a long illness my husband passed away on the 19th March. It was an illness...

maybe some of you have noticed I’ve been absent from this site of late well afte...

Wyebird

•2 days ago

72 Replies

Herediatary ET

I'm JAK2 positive with ET and I'm coping well on Hydroxy with regular visits to the Haem/Oncology team. My 38 year old son mentioned that he had these huge...

I'm JAK2 positive with ET and I'm coping well on Hydroxy with regular visits to ...

Janglo

•3 days ago

15 Replies

malaria

Unfortunately I cannot help although I have taken anti malaria pills in the past it was before I was on hydroxycarbamide

Unfortunately I cannot help although I have taken anti malaria pills in the past...

grandpa101

•3 days ago

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High Ferritin, LDH & ALT

Hi Friends, I’m ETJ2+ My last bloods showed Ferritin- 490 (says max normal is 200) LDH- 268 (says max normal is 220) ALT- 99 (says max normal is 55) I was...

Hi Friends, I’m ETJ2+ My last bloods showed Ferritin- 490 (says max normal is...

Threelions

•3 days ago

4 Replies

Shingles Jab

I am on hydroxy. Am I OK to have the shingles jab?

robcaduk

•4 days ago

14 Replies

Getting tested for autoimmune diseases

I posted about experiencing intermittent burning joint pain and I appreciated hearing everyone's responses. There were a few people who said they also had...

I posted about experiencing intermittent burning joint pain and I appreciated he...

brightlys

•4 days ago

22 Replies

Malaria tablets

Hi everyone, am I the process of looking at a holiday. I know yellow fever vaccine is a big no no. Am on hydroxycarbamide and daily aspirin with a diagnosis...

Hi everyone, am I the process of looking at a holiday. I know yellow fever vacc...

SazzaC

•4 days ago

4 Replies

Team alpha!!!!

I acted like an adult today and had my MRI! Stable old lesions with no change. On my last MRI before Besremi I had a new one and it has shown improvement!!!!...

I acted like an adult today and had my MRI! Stable old lesions with no change. ...

KLCTJC

•4 days ago

24 Replies

Hello from Syracuse, NY!!

Hello everyone. I am new here and newly diagnosed with ET. Using forums of this type to learn about MPN's. Will likely spend my time lurking to learn. Nice...

Hello everyone. I am new here and newly diagnosed with ET. Using forums of this ...

Skidsteer565

•4 days ago

15 Replies

Has anyone used FSM for joint pain and disc bulges with an MPN

I have recently been in a car accident which has inflamed neck pain and disc bulge issues - I am seeing an osteopath who has suggested using an fsm machine at...

I have recently been in a car accident which has inflamed neck pain and disc bul...

BeckDing

•4 days ago

4 Replies

Changing meds

Hi everyone, I haven't been on for a while I had a family tragedy and I have been feeling terrible for quite a while now . Anyway I am finally changing from...

Hi everyone, I haven't been on for a while I had a family tragedy and I have be...

indy22

•5 days ago

8 Replies

2nd generation Jak-i's, what's up?

I posted last year on a 2nd gen Jak inhibitor. This is different from the various recently approved ones for MF (Vonjo etc) that are more related to Gen 1...

I posted last year on a 2nd gen Jak inhibitor. This is different from the vario...

EPguy

•5 days ago

3 Replies

can I have your thoughts

these are my latest blood tests Have a telephone appointment on Monday Have all the symptoms of PV not sure if I’ve had the Jak test will ask on Monday...

these are my latest blood tests Have a telephone appointment on Monday Have ...

enchantedmum

•5 days ago

1 Reply

my apologies for the repetition of posts 🤷‍♀️

I am sorry and I don’t know how I managed it …. 🙆‍♀️ I see there are 3 sugar and alcohol posts all the same post tho with different threads of answers....

I am sorry and I don’t know how I managed it …. 🙆‍♀️ I see there are 3 sugar ...

Pachena

•5 days ago

2 Replies

Update on heart problems

Thank you all for your input last week re my 2 leaky valves and pulmonary hypertension diagnosis. Forgot to mention also have very low heart beat, low 40s ,...

Thank you all for your input last week re my 2 leaky valves and pulmonary hypert...

JP1952

•6 days ago

5 Replies

Jak2 Allele Burden reveal

I’m Canadian and after reading posting on this site I’ve noticed the percentage of Alle Burden is often referred to, so I asked my haematologist what mine was...

I’m Canadian and after reading posting on this site I’ve noticed the percentage...

Suenami

•6 days ago

41 Replies

Good results, hoping continues

I feel like I am halfway there! Labs looked good. Wbc 3.3, hct 41.5, plts 216, neutrophils 2.9, lymphocytes 0.5. Was so excited I squealed today!...

I feel like I am halfway there! Labs looked good. Wbc 3.3, hct 41.5, plts 216,...

KLCTJC

•6 days ago

9 Replies

JAK2 V617F Allele Burden and Thrombotic Events in Patients w/ JAK2 V617F Positive PCV/ET @ High Risk of Thrombosis

Background: The goal of therapy of polycythemia vera (PV) and essential thrombocythemia (ET) is primarily to prevent vascular events that are the...

Background: The goal of therapy of polycythemia vera (PV) and essential thromboc...

PhysAssist

•6 days ago

15 Replies

PV, Botox & Blood Thinners

Hi MPN Community! I have looked at past posts regarding having PV and getting Botox, however, I just wanted people's input regarding whether they get Botox...

Hi MPN Community! I have looked at past posts regarding having PV and getting B...

PVKween

•6 days ago

4 Replies

Treatment Change, question

Hi Everyone, I'm enjoying all of the posts and replies they are really informative. I'm in the process in changing my medication from hydroxycarbamide to...

Hi Everyone, I'm enjoying all of the posts and replies they are really informat...

Swim360

•7 days ago

20 Replies

Sugar and alcohol…?

Just wondering if it’s best to cut them from the diet or does it really matter? Do they make any difference to people with MPN’s. We are overseas and I am...

Just wondering if it’s best to cut them from the diet or does it really matter? ...

Pachena

•7 days ago

17 Replies

Sugar and alcohol…?

Just wondering if it’s best to cut them from the diet or does it really matter? Do they make any difference to people with MPN’s. We are overseas and I am...

Just wondering if it’s best to cut them from the diet or does it really matter? ...

Pachena

•7 days ago

45 Replies

Write a post or ask a question

Posts - MPN Voice | HealthUnlocked

MPN Voice

PV….is cupping contraindicated?

ET + Anagrelide

My SCT journey continues

Neurology appointment

Tumeric/circumin

does anyone out there have histamine intolerance?

Stem cell transplant

Migraine

my recent absence from this site

Herediatary ET

malaria

High Ferritin, LDH & ALT

Shingles Jab

Getting tested for autoimmune diseases

Malaria tablets

Team alpha!!!!

Hello from Syracuse, NY!!

Has anyone used FSM for joint pain and disc bulges with an MPN

Changing meds

2nd generation Jak-i's, what's up?

can I have your thoughts

my apologies for the repetition of posts 🤷‍♀️

Update on heart problems

Jak2 Allele Burden reveal

Good results, hoping continues

JAK2 V617F Allele Burden and Thrombotic Events in Patients w/ JAK2 V617F Positive PCV/ET @ High Risk of Thrombosis

PV, Botox & Blood Thinners

Treatment Change, question

Sugar and alcohol…?

Sugar and alcohol…?

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