Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for August 2022

Frustrated

Hello, Over two years ago i was referred to hospital after a routine blood test suggested i have PV. I had all the tests including a BMB. The biopsy was not...

Hello, Over two years ago i was referred to hospital after a routine blood test...

Loose_ends

•2 years ago

19 Replies

Lysine

Is Lysine good for us to take?

Barbiebreath

•2 years ago

5 Replies

interferon resistant

I was on pegasys(max dose) for 3 years with hydrea and now on besremi since April with titration of hydrea. Since off hydrea my numbers have been creeping...

I was on pegasys(max dose) for 3 years with hydrea and now on besremi since ...

yippinurse

•2 years ago

2 Replies

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Does anyone have ET/PV for more than 40 years without progression? I really haven't heard of any in this site..

I read about many ET/PV progressions and i am curious if anyone has stable ET/PV for many many years without progression

I read about many ET/PV progressions and i am curious if anyone has stable ET/P...

Aneliv9

•2 years ago

32 Replies

Hydroxy and The Sun

Hello everyone. I am newly diagnosed and still in denial that I am that special 1 in 100,000 - like many of you - with ET. I started hydroxycarbamide a week...

Hello everyone. I am newly diagnosed and still in denial that I am that special...

AgnethaF

•2 years ago

19 Replies

MPN specialist

Got a second look from an mpn specialist yesterday here in Houston, TX and I am glad I took Hunter’s advice. I was happy with my hemo but just couldn’t get...

Got a second look from an mpn specialist yesterday here in Houston, TX and I am ...

dbus1417

•2 years ago

5 Replies

Recommendations for travel sickness tablets to settle stomach before flying or journeys

Any safe recommendations for travel sickness tablets to take prior to travelling anywhere. I have Polycythaemia Vera and take Hydroxycarbamide always suffer...

Any safe recommendations for travel sickness tablets to take prior to travelling...

Edinburgh1953

•2 years ago

5 Replies

newly diagnosed MS with history of PV

Devastated find out I can not take Besremi as it can make MS worse. I have wondered why my wbcs out of nowhere started to rise. I suspect I have had...

Devastated find out I can not take Besremi as it can make MS worse. I have won...

KLCTJC

•2 years ago

2 Replies

abdominal pain at night

hi, Im currently on Hydroxycarbamide I take 2 capsules every night at 10.30pm I’ve been totally fine for the couple of months or so I’ve bee on them. But...

hi, Im currently on Hydroxycarbamide I take 2 capsules every night at 10.30pm ...

Kizzy03

•2 years ago

13 Replies

Genetic tests

What can genetic testing find, beyond mutations? I believe they are looking at the megakaryocytes but not totally sure if I heard correctly. What information...

What can genetic testing find, beyond mutations? I believe they are looking at t...

artydutch

•2 years ago

17 Replies

essential thrombocytosis

I was diagnosed with et almost 4 years ago,had all the tests investigations etc,my platelets are now almost normal but apparently my hb is slightly low.i am...

I was diagnosed with et almost 4 years ago,had all the tests investigations et...

glyndale

•2 years ago

16 Replies

blood film morphology

Hi hoping someone can help with this I was given a copy of blood film results last week which were taken whilst I was at consultation on 8th nothing was...

Hi hoping someone can help with this I was given a copy of blood film results...

Cityreach

•2 years ago

8 Replies

Energy costs and inflation going through the roof and now the NHS finally gone to pot!!

It's not very often I post but still pop on the forum now and then but just had to write after seeing people post about getting a referral to an Mpn...

It's not very often I post but still pop on the forum now and then but just h...

Tico

•2 years ago

20 Replies

Balance issues

Hello everybody. The bottom line is, does anybody know of, or think there may be a link between MPNs and balance? I've not come across any direct...

Hello everybody. The bottom line is, does anybody know of, or think there m...

DottyDaisy

•2 years ago

10 Replies

Referal to an MPN specialist

Just wondering how others have managed to get referred to an MPN specialist rather than a haematologist? I'm based near Middlesbrough and whilst I thought my...

Just wondering how others have managed to get referred to an MPN specialist rath...

Transporter

•2 years ago

28 Replies

Fibrosis, Grade 0 does not mean None

In another thread we've been discussing cellularity and fibrosis. I've found an unexpected (to me) result in my study. None is not an answer, we all need...

In another thread we've been discussing cellularity and fibrosis. I've found an...

EPguy

•2 years ago

2 Replies

Sleepless in Sussex

I wonder if I’ll ever feel normal again. I am so very tired. Im on hydroxy and have peripheral neuropathy on my leg and foot. I was prescribed amitriptyline...

I wonder if I’ll ever feel normal again. I am so very tired. Im on hydroxy and ...

Cokopops

•2 years ago

17 Replies

Inflammation and Fatigue

68 yo F, with ET , Jak2 mutation, on interferon 45ug every 10 days. I have only been this fatigued once before and I had pneumonia. It definitely started...

68 yo F, with ET , Jak2 mutation, on interferon 45ug every 10 days. I have only...

Planti

•2 years ago

15 Replies

Heparin Induced thrombocytopenia

Advise come from Dr. Aaron Goodman https://twitter.com/AaronGoodman33/status/1561684616603320321?t=pWP_paPVNmbgVCWoxYKpNQ&s=19

Advise come from Dr. Aaron Goodman https://twitter.com/AaronGoodman33/status...

william-Indo

•2 years ago

2 Replies

Questions on Hydrea usage

I have been on this Forum for a long time and just like to say thanks to every one for the great info. Quite scared about taking Hydrea which I will have to...

I have been on this Forum for a long time and just like to say thanks to every o...

georgevanier

•2 years ago

15 Replies

JAK2 Reversible Activation Shows an Essential Requirement for Jak2V617F in MPN

« We hypothesized that the limited potency of JAK inhibition relates to insufficient mutant kinase inhibition at achievable therapeutic doses, and we and...

« We hypothesized that the limited potency of JAK inhibition relates to insuffi...

Manouche

•2 years ago

6 Replies

MF and inflammation - Angela Fleischman

Interesting presentation, inflammation is a major contributor if not instigator of MF...

Interesting presentation, inflammation is a major contributor if not instigator ...

Paul123456

•2 years ago

10 Replies

interesting book

I’ve been recommended Cured , by Dr. Jeff Rediger. only read a bit . It’s very readable .

I’ve been recommended Cured , by Dr. Jeff Rediger. only read a bit . It’s very...

Mostew

•2 years ago

1 Reply

confused about options

I’m currently on 4 capsules of hydrea a week and my platelets are now at 583 which is ok with both my local hematologist and my MPN specialist at Stanford. I...

I’m currently on 4 capsules of hydrea a week and my platelets are now at 583 whi...

Pounds11

•2 years ago

20 Replies

stuck with how to ask for alternative to Hydrea

asking for other medication

Pounds11

•2 years ago

6 Replies

PV with MS

Well….started having double vision. Went to the hospital. No phlebotomy needed other numbers are not any different. I am still waiting to get Besremi....

Well….started having double vision. Went to the hospital. No phlebotomy needed...

KLCTJC

•2 years ago

8 Replies

Bone Marow biopsy

Hi everyone I’m new to posting but have been reading over the past few months I was recently diagnosed with ET and JAK 2 Gene mutation I have every symptom...

Hi everyone I’m new to posting but have been reading over the past few months I...

Nc3500

•2 years ago

39 Replies

leg pain below knee bilaterally in ET treated with Hydrea.

leg pain bilaterally in ET treated with Hydra ( diagnosed 2014) Does anyone else have this?

leg pain bilaterally in ET treated with Hydra ( diagnosed 2014) Does anyone els...

Rita-Lou

•2 years ago

5 Replies

Blood test results and hydration

I’m pretty certain that my tests are affected by hydration, counts higher if less hydrated. Do others agree? I wonder if the same applies to mutation tests?...

I’m pretty certain that my tests are affected by hydration, counts higher if les...

Paul123456

•2 years ago

2 Replies

Views on the new Moderna Double Vaccine just announced please.

Having just heard on the news that this new vaccine has just been approved in the UK, the first country to do so, I am wondering what everyone thinks about...

Having just heard on the news that this new vaccine has just been approved in th...

azaelea

•2 years ago

27 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2022

Frustrated

Lysine

interferon resistant

Does anyone have ET/PV for more than 40 years without progression? I really haven't heard of any in this site..

Hydroxy and The Sun

MPN specialist

Recommendations for travel sickness tablets to settle stomach before flying or journeys

newly diagnosed MS with history of PV

abdominal pain at night

Genetic tests

essential thrombocytosis

blood film morphology

Energy costs and inflation going through the roof and now the NHS finally gone to pot!!

Balance issues

Referal to an MPN specialist

Fibrosis, Grade 0 does not mean None

Sleepless in Sussex

Inflammation and Fatigue

Heparin Induced thrombocytopenia

Questions on Hydrea usage

JAK2 Reversible Activation Shows an Essential Requirement for Jak2V617F in MPN

MF and inflammation - Angela Fleischman

interesting book

confused about options

stuck with how to ask for alternative to Hydrea

PV with MS

Bone Marow biopsy

leg pain below knee bilaterally in ET treated with Hydrea.

Blood test results and hydration

Views on the new Moderna Double Vaccine just announced please.

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Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2022

Frustrated

Lysine

﻿interferon resistant

﻿Does anyone have ET/PV for more than 40 years without progression? I really haven't heard of any in this site..

Hydroxy and The Sun

MPN specialist

Recommendations for travel sickness tablets to settle stomach before flying or journeys

newly diagnosed MS with history of PV

abdominal pain at night

Genetic tests

﻿essential thrombocytosis

﻿blood film morphology

﻿Energy costs and inflation going through the roof and now the NHS finally gone to pot!!

﻿Balance issues

Referal to an MPN specialist

Fibrosis, Grade 0 does not mean None

Sleepless in Sussex

Inflammation and Fatigue

Heparin Induced thrombocytopenia

Questions on Hydrea usage

JAK2 Reversible Activation Shows an Essential Requirement for Jak2V617F in MPN

MF and inflammation - Angela Fleischman

interesting book

confused about options

stuck with how to ask for alternative to Hydrea

PV with MS

Bone Marow biopsy

leg pain below knee bilaterally in ET treated with Hydrea.

Blood test results and hydration

Views on the new Moderna Double Vaccine just announced please.

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

interferon resistant

Does anyone have ET/PV for more than 40 years without progression? I really haven't heard of any in this site..

essential thrombocytosis

blood film morphology

Energy costs and inflation going through the roof and now the NHS finally gone to pot!!

Balance issues