Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,730 posts

All posts for September 2022

Nattokinase

as i was beginning to suspect no equivelant natto to asprin as they work differently. Im going to wait till platelet s lower then try...

as i was beginning to suspect no equivelant natto to asprin as they work diffe...

Mostew

•2 years ago

1 Reply

et to mf update

well spoke to my consultant today not sure if im progressing bloods normal apart from slightly low hb which has been up and down for last 3 years,so having a...

well spoke to my consultant today not sure if im progressing bloods normal apart...

glyndale

•2 years ago

6 Replies

Epidural Injections for Back Pain for MPN Patient

I am scheduled for an epidural Friday and have some concerns since I have PV and ET. I have stopped taking aspirin as well as Eliquis; however, I am concerned...

I am scheduled for an epidural Friday and have some concerns since I have PV and...

Buggerbear

•2 years ago

14 Replies

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Hydrea

Having been a participant of this forum for a while, I am so appreciative for the knowledgeable information it provides. I am in my 70' s and was wondering...

Having been a participant of this forum for a while, I am so appreciative for th...

georgevanier

•2 years ago

18 Replies

How quickly to increase Besremi dose?

I've taken my first 100mcg dose of Besremi and would like to hear from others how much they increased their dose, and in what time frame. I was prescribed...

I've taken my first 100mcg dose of Besremi and would like to hear from others ho...

PupsBestFriends

•2 years ago

24 Replies

Mayo Clinic Received a totally different approach to managing my MPN

Hi Everyone, Currently I am being treated for PCV and taking Coumadin (hx of Blood clots x2) and Besremi since June 2022 per my MPN specialist in Denver,...

Hi Everyone, Currently I am being treated for PCV and taking Coumadin (hx of...

JeanieRN

•2 years ago

17 Replies

Knee replacement

I have ET and am concerned about getting knee replacement surgery and the chance of blood clots. I read that the average blood loss is 800 ml. Has anyone...

I have ET and am concerned about getting knee replacement surgery and the chance...

Whitehair51

•2 years ago

5 Replies

Nattokinase

havnt had a response yet from company. Re. How much to take in place of asprin . Read lots of reviews on Dr.s best brand . All glowing....

havnt had a response yet from company. Re. How much to take in place of asprin...

Mostew

•2 years ago

5 Replies

Essential Thrombocytosis and having knee surgery

I am looking for feedback on how this diagnosis will effect a fairly major surgery. I have a need for total knee replacement- have already had arthroscopy on...

I am looking for feedback on how this diagnosis will effect a fairly major surge...

Kauaiboy

•2 years ago

1 Reply

Can caffeine cause and episode with ET?

Hello, I have ET and I am not on any medications yet. I do take an aspirin daily. On Sunday morning we were visiting with family and drinking a lot of...

Hello, I have ET and I am not on any medications yet. I do take an aspirin dail...

Ssssfamily

•2 years ago

7 Replies

Mpn london 5th November

hello my husband is 35 and got diagnosed in June with Et calr type 1 just wondering is there anyone else in his age range attending this?

hello my husband is 35 and got diagnosed in June with Et calr type 1 just wond...

Green1988

•2 years ago

11 Replies

Allele Burden Question

I went back and reviewed my bone marrow biopsy results taken to establish as a baseline prior to Besremi for reference regarding allele burden. There were...

I went back and reviewed my bone marrow biopsy results taken to establish as a b...

mfh7

•2 years ago

15 Replies

ET normal range platelets.

sorry with late reply. My bloods Hb 139 wbc 9.28 Neut 2.9 Plt 299 With platelets being in normal range for a while there checking me for bone marrow...

sorry with late reply. My bloods Hb 139 wbc 9.28 Neut 2.9 Plt 299 With platel...

Jbut

•2 years ago

5 Replies

kidney stone

Is it common for MPN patients to have kidney stones? I had one last week . So painful. I had never had one before and am 73 .

Is it common for MPN patients to have kidney stones? I had one last week . So ...

Cookiebaker

•2 years ago

3 Replies

aspirin question?

who’s taking aspirin only for treatment ET … how much dosage for 1 day?

shiela23

•2 years ago

8 Replies

Neutrophil-to-Lymphocyte Ratio May Predict Thrombotic Events in Polycythemia Vera

Neutrophil-to-Lymphocyte Ratio May Predict Thrombotic Events in Polycythemia Vera Vicki Moore, PhD A new study suggests that the neutrophil-to-lymphocyte...

Neutrophil-to-Lymphocyte Ratio May Predict Thrombotic Events in Polycythemia Ver...

PhysAssist

•2 years ago

18 Replies

Is ET hereditary ?

Hi, just wondering if anyone is aware if ET is hereditary ? I was diagnosed five years ago, I'm JAK 2 positive ( although to tell you the truth, I'm honestly...

Hi, just wondering if anyone is aware if ET is hereditary ? I was diagnosed fi...

Catbells66

•2 years ago

51 Replies

myelofibrosis

Has anyone had mf for a long time and does treatment stop progression, thinking about starting medication which i think is my only option Thank you

Has anyone had mf for a long time and does treatment stop progression, thinking ...

glyndale

•2 years ago

14 Replies

Besremi Cost and Medicare Donut Hole for Prescription Drugs

I am still working and still enjoying an insignificant amount of payment for my Besremi. I will turn 65 in January and be eligible for Medicare and 'might'...

I am still working and still enjoying an insignificant amount of payment for my ...

Pat032018

•2 years ago

7 Replies

Request - Reco for excellent haematologists in Portugal

Hello all, Will move to Portugal in the near future. Looking for excellent haematologist recommendations in Portugal. I am hoping to get reco from people who...

Hello all, Will move to Portugal in the near future. Looking for excellent hae...

Iwillwin123

•2 years ago

5 Replies

starting on Interferon

hi everyone I’ve been diagnosed with PV 6 years ago and am 57. I live in Uk and have been managing blood levels with a baby aspirin and venesections. Last...

hi everyone I’ve been diagnosed with PV 6 years ago and am 57. I live in Uk an...

Sanga

•2 years ago

18 Replies

PEGASYS and Besremi Site injection pain

Hi guys, Has anyone else experienced immense injection site pain from Interferon? I have had PV for about 10 years or so now and was just last year in Feb...

Hi guys, Has anyone else experienced immense injection site pain from Interfero...

S_anth

•2 years ago

25 Replies

Possible Scam

A friend aged 90 , who lives alone, just told me that yesterday a man rang her doorbell and told her that he was there to undertake her blood test. As she had...

A friend aged 90 , who lives alone, just told me that yesterday a man rang her ...

gilded

•2 years ago

9 Replies

myelofibrosis

hello has anyone had mf for a long time and do some symptoms improve when you start treatment.

hello has anyone had mf for a long time and do some symptoms improve when you s...

glyndale

•2 years ago

10 Replies

Covid Jab anyone had there booster yet

hi what covid jab are pepe choosing l just had my flu jab today and booked my jab for tomorrow Sunday.. Unsure Adiewon

hi what covid jab are pepe choosing l just had my flu jab today and booked my ja...

Hidden

•2 years ago

27 Replies

very informative talk on bone marrow biopsy

I found this talk to be very informative; I wish it had been filmed to a better standard and that the slides were visible for longer, but Dr. Wendy Erber is...

I found this talk to be very informative; I wish it had been filmed to a better...

Aldebaran25

•2 years ago

12 Replies

my experience with peg

hello, I'm Tatiana and I have Jek-2 from 3 years, I am fine with PEG too but muscle pains are crazy sometimes. I also have a very busy life and after evening I...

hello, I'm Tatiana and I have Jek-2 from 3 years, I am fine with PEG too but mus...

Tati08

•2 years ago

2 Replies

HU - one good thing

There are so many bad things about ET. I have been on HU for about 2 1/2 months. The good thing is I used to be lactose intolerant and now I can eat...

There are so many bad things about ET. I have been on HU for about 2 1/2 month...

Winchie

•2 years ago

7 Replies

ET and slighty enlarged liver?

I just had a ct scan for another reason and it said I had mild hepatimegaly (enlarged liver). Does anyone know if that could be caused by ET? Thanks!

I just had a ct scan for another reason and it said I had mild hepatimegaly (enl...

ts75

•2 years ago

3 Replies

essential thrombocytosis or mf

not sure if my et is progressing to mf, Hb 112,normal mcv ,wbc 5 .2,neutrophils 3.6,platelets 352,eGfr 88,lft normal, ldh595.mild splenomegaly at 13.7....

not sure if my et is progressing to mf, Hb 112,normal mcv ,wbc 5 .2,neutrophils ...

glyndale

•2 years ago

15 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2022

Nattokinase

et to mf update

Epidural Injections for Back Pain for MPN Patient

Hydrea

How quickly to increase Besremi dose?

Mayo Clinic Received a totally different approach to managing my MPN

Knee replacement

Nattokinase

Essential Thrombocytosis and having knee surgery

Can caffeine cause and episode with ET?

Mpn london 5th November

Allele Burden Question

ET normal range platelets.

kidney stone

aspirin question?

Neutrophil-to-Lymphocyte Ratio May Predict Thrombotic Events in Polycythemia Vera

Is ET hereditary ?

myelofibrosis

Besremi Cost and Medicare Donut Hole for Prescription Drugs

Request - Reco for excellent haematologists in Portugal

starting on Interferon

PEGASYS and Besremi Site injection pain

Possible Scam

myelofibrosis

Covid Jab anyone had there booster yet

very informative talk on bone marrow biopsy

my experience with peg

HU - one good thing

ET and slighty enlarged liver?

essential thrombocytosis or mf

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