Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for October 2020

ET Jak 2 neg

Hi what is the difference between Jak 2neg and Jak 2pos and what is Triple neg mean is one not a bad ad the other please it’s so confusing and Et and PV...

Hi what is the difference between Jak 2neg and Jak 2pos and what is Triple neg ...

Windy51

•4 years ago

4 Replies

Immature Granulocytes and Nucleated red blood cells with E.T ?

I was recently diagnosed with E.T Calr+ about a week ago (platelets 670). I have been seeing my GP and Hematologist. All my blood labs were great except I...

I was recently diagnosed with E.T Calr+ about a week ago (platelets 670). I hav...

mother2britton

•4 years ago

4 Replies

Do We Need To “Shield” Again

This seems like a good point to ask my fellow MPNers what they are going to do in relation to the increase of Covid 19 cases and the latest lockdown...

This seems like a good point to ask my fellow MPNers what they are going to do i...

Threelions

•4 years ago

17 Replies

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Vitamin d deficiency

Hi all. After suffering for so long with joint pain I've now been told i have a vitamin d deficiency and been advised to take vitamin d supplements. I have pv...

Hi all. After suffering for so long with joint pain I've now been told i have a ...

poly2

•4 years ago

7 Replies

long awaited venasection done yesterday &....

...I feel a million times better...first morning in ages I haven't woke up with a banging headache and feel more alive, I hope it lasts!! My concern now is...

...I feel a million times better...first morning in ages I haven't woke up with ...

Tess74

•4 years ago

11 Replies

Monocytes and PVC

Monocytes have increased through this year from zero to now 1817/mm3: I have PVC, on Hydrea 2x daily, no idea why this has happened, nor has doc. Anyone have...

Monocytes have increased through this year from zero to now 1817/mm3: I have PVC...

lucieboo

•4 years ago

6 Replies

Calcium

Hi when on Hydrea are we supposed to take Calcium tablets please and I must do magnesium again for cramps I just heard somewhere is anyone on them please 🙂

Hi when on Hydrea are we supposed to take Calcium tablets please and I must do m...

Windy51

•4 years ago

4 Replies

Flights

Hi everyone I have ET and I am on Hydrea and Asprin has anyone been told they can not fly anywhere

Hi everyone I have ET and I am on Hydrea and Asprin has anyone been told they ca...

Windy51

•4 years ago

21 Replies

does PV change life expectancy?

I'm sorry to bring up this topic, but I never seem to get a straight answer from the hematologist. The question is the extent to which Polycythemia is likely...

I'm sorry to bring up this topic, but I never seem to get a straight answer from...

souplover

•4 years ago

21 Replies

From anisocytosis to light, moderate and now severe macrocytosis after 6 months on Hydrea (1000mg daily) for ET Jak2. Help, please!

Hi fellow MPNers, I hope you're all safe and well in these crazy times! I'm scared - and angry! I live in France and I haven't seen my haem since the...

Hi fellow MPNers, I hope you're all safe and well in these crazy times! I'm scar...

Fernsong

•4 years ago

14 Replies

PCV and Monocytes

I have had PCV for nearly 11 years, well controlled with Hydrea, re. haematocrit, red blood corpuscles, but the white cell level has gradually increased and...

I have had PCV for nearly 11 years, well controlled with Hydrea, re. haematocrit...

lucieboo

•4 years ago

9 Replies

Hydrea de

We can have this but of course when you take blood thinners, you have to speak about it to your doctor. Maybe you have to take shots in stead of pills. Grt

We can have this but of course when you take blood thinners, you have to speak a...

lhasedoglover

•4 years ago

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Appointment being cancelled

well my appointment has been cancelled to check my mole at the hospital has covid19 has taking over again,so now on the 2nd of November got to have a telephone...

well my appointment has been cancelled to check my mole at the hospital has covi...

Jody00

•4 years ago

10 Replies

Getting wisdom teeth pulled

I was wondering if it’s ok to have your wisdom teeth pulled when you have ET and are taking Hydrea? Thank you

I was wondering if it’s ok to have your wisdom teeth pulled when you have ET and...

0224

•4 years ago

6 Replies

Does Hydroxycarbamide affect your teeth?

I have been taking hydroxy for 5 years. I have always had really good teeth, brushing twice a day and after anything sweet and also using a water pik to remove...

I have been taking hydroxy for 5 years. I have always had really good teeth, bru...

jillydabrat

•4 years ago

15 Replies

Bone marrow biopsy results.

It’s taken a while but I finally have a conclusive result from a bone marrow biopsy and it shows that I am pre-fibrotic MF. I was able to talk to my...

It’s taken a while but I finally have a conclusive result from a bone marrow bio...

cabinetmaker

•4 years ago

11 Replies

Enlarged spleen symptoms

Curious if folks here could describe what it feels like when youve had an enlarged spleen? Thanks.

Curious if folks here could describe what it feels like when youve had an enlarg...

JT_Marlin

•4 years ago

10 Replies

Plavix for high blood platelets

polycythemia

honor2012

•4 years ago

2 Replies

Jakafi and Tinnitus

I have developed Tinnitus in both ears in the years I have been taking Jakafi. My red cell count is well controlled, so I don't think it is related to PV....

I have developed Tinnitus in both ears in the years I have been taking Jakafi. ...

Psteuer

•4 years ago

6 Replies

ICC ruled in favor of AOP Orphan Pharmaceuticals AG in arbitration proceedings pertaining to BESREMi®

«We are relieved that the ICC ruling compensates AOP Orphan now for the delay in getting BESREMi® approved in the European Union, and the delay in bringing...

«We are relieved that the ICC ruling compensates AOP Orphan now for the delay in...

Manouche

•4 years ago

5 Replies

ICC ruled in favor of AOP Orphan Pharmaceuticals AG in arbitration proceedings pertaining to BESREMi®

«After two and a half years of arbitration proceedings concerning BESREMi® (Ropeginterferon alfa-2b), the decision by the ICC Arbitral Tribunal has now been...

«After two and a half years of arbitration proceedings concerning BESREMi® (Rope...

Manouche

•4 years ago

2 Replies

The many facets of fatigue

« Many definitions of fatigue have been proposed. One that is often cited refers to fatigue as “an overwhelming, debilitating, and sustained sense of...

« Many definitions of fatigue have been proposed. One that is often cited refers...

Manouche

•4 years ago

10 Replies

Thank you

Just read the document on Covid 19 and making decisions on day to day life. I think it was just amazing and as I read it my stress levels declined and I felt...

Just read the document on Covid 19 and making decisions on day to day life. I th...

Cassandra61

•4 years ago

3 Replies

Jak2 allele burden results

31%. I have had PV since 2005 and been on Interferon most of the time. Logically I think 31% is good. In fact great. Am I right? Should I dance for joy? I...

31%. I have had PV since 2005 and been on Interferon most of the time. Logicall...

MPort

•4 years ago

17 Replies

Going well so far with MF on Ruxolitinib

When I was diagnosed with post ET Myelofibrosis in August, I was terrified and extremely grateful for the support on this forum. I thought I would just update...

When I was diagnosed with post ET Myelofibrosis in August, I was terrified and e...

Otterfield

•4 years ago

10 Replies

Just a newbie but desperate for independent information and experiences!

Just a newbie with ET CalR. Still a little bit in denial as my diagnosis was not handled well at all. I was having regular blood tests for RA and my...

Just a newbie with ET CalR. Still a little bit in denial as my diagnosis was no...

Quercus53

•4 years ago

36 Replies

Travelling

I'm 70 have ET and am Jak2 positve. I have a holiday booked for January in the Canary Islands, booked over a year ago. If I'm going I need to book my flights...

I'm 70 have ET and am Jak2 positve. I have a holiday booked for January in the C...

Linda1950

•4 years ago

6 Replies

BLOOD TYPES & COVID–19 CONNECTIONS TO SEVERITY

Post by MPN-MATE Admin » Tue Oct 27, 2020 11:44 am Morning all... :D Not that I wish to be the bringer of any more harsh news concerning the COVID–19...

Post by MPN-MATE Admin » Tue Oct 27, 2020 11:44 am Morning all... :D Not tha...

socrates_8

•4 years ago

24 Replies

ET Jak2 and anemia

I have ET Jak2 and anemia. One doctor says it is noted because the red blood cells are smaller the last 2 months. He thinks taking iron pills will help. He...

I have ET Jak2 and anemia. One doctor says it is noted because the red blood ce...

milw532

•4 years ago

4 Replies

Ibs-Probiotics

Hi does anyone take probiotics tablets for Ibs? if so what are the best ones i take actimel but my ibs is still bad i am waking in the nights and needing the...

Hi does anyone take probiotics tablets for Ibs? if so what are the best ones i t...

BECCA8

•4 years ago

27 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2020

ET Jak 2 neg

Immature Granulocytes and Nucleated red blood cells with E.T ?

Do We Need To “Shield” Again

Vitamin d deficiency

long awaited venasection done yesterday &....

Monocytes and PVC

Calcium

Flights

does PV change life expectancy?

From anisocytosis to light, moderate and now severe macrocytosis after 6 months on Hydrea (1000mg daily) for ET Jak2. Help, please!

PCV and Monocytes

Hydrea de

Appointment being cancelled

Getting wisdom teeth pulled

Does Hydroxycarbamide affect your teeth?

Bone marrow biopsy results.

Enlarged spleen symptoms

Plavix for high blood platelets

Jakafi and Tinnitus

ICC ruled in favor of AOP Orphan Pharmaceuticals AG in arbitration proceedings pertaining to BESREMi®

ICC ruled in favor of AOP Orphan Pharmaceuticals AG in arbitration proceedings pertaining to BESREMi®

The many facets of fatigue

Thank you

Jak2 allele burden results

Going well so far with MF on Ruxolitinib

Just a newbie but desperate for independent information and experiences!

Travelling

BLOOD TYPES & COVID–19 CONNECTIONS TO SEVERITY

ET Jak2 and anemia

Ibs-Probiotics

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