Posts - MPN Voice | HealthUnlocked

MPN Voice

10,438 members • 14,387 posts

All posts for June 2023

possitive

Hi just have to say what wonderful people you all are.This is the MOST positive sight I have been on .Your all. breath of fresh air Thankyou I have very low...

Hi just have to say what wonderful people you all are.This is the MOST positive...

Polish1

•10 months ago

12 Replies

Travel

I have gone from taking thyroxine only to taking aspirin statins, hyroxycarbarbamide now it maybe BP tablets will it cost a fortune to add BP tablets to my...

I have gone from taking thyroxine only to taking aspirin statins, hyroxycarbarb...

ChillyAsh34

•10 months ago

2 Replies

Update, sort of good and not so good news

My bloods have been good for some time, but, they reduced my interferon to 90 and the HCT went up over the target 0.45, for three quarters, not by much, 0.47,...

My bloods have been good for some time, but, they reduced my interferon to 90 an...

shiftzz

•10 months ago

6 Replies

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Et triple negative platlets gone up to 1560

Hi all, Just getting back on here about platlets increasing over 1500,My hematologist will want me on hydroxyurea as he said when I go over 1500 that is his...

Hi all, Just getting back on here about platlets increasing over 1500,My hematol...

Mike1974

•10 months ago

31 Replies

itchy skin

hello , hope everyone is keeping well . I have been on Interferon 45 mcg for a month then increased to 90 mcg which I have been taking for three weeks but I...

hello , hope everyone is keeping well . I have been on Interferon 45 mcg for a ...

Franko21

•10 months ago

52 Replies

Anagrelide

Hello all you good people, just a question about Anagrelide. How many people on this forum are taking it currently or have tried it in the past ? I have ET and...

Hello all you good people, just a question about Anagrelide. How many people on ...

Janis12

•10 months ago

24 Replies

Interferon - Headache

Hi Hope everyone is well. I had my first Interferon injection Monday after stopping the Hydroxy. Felt fine on Monday, bit lightheaded on Tuesday and a...

Hi Hope everyone is well. I had my first Interferon injection Monday after s...

Arnoldthecat

•10 months ago

39 Replies

Anyone tried omalizumab to manage the pruritus?

Hi all, Is there anyone who tried omalizumab as a way to manage pruritus? It looks like was quite successful in a small study....

Hi all, Is there anyone who tried omalizumab as a way to manage pruritus? It loo...

Dane12

•10 months ago

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New investigation area for targeting bone marrow inflammation

Hi all, Another direction of research in addressing the inflammation in MF. https://ascopubs.org/doi/abs/10.1200/JCO.2023.41.16_suppl.TPS7087?af=R

Hi all, Another direction of research in addressing the inflammation in MF. http...

Dane12

•10 months ago

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MPN event Gloucester and S Wales 21 July

There is a danger that this event will be cancelled if not enough people turn up. I'd like to recommend it to you if Bristol is doable for you. My mpn...

There is a danger that this event will be cancelled if not enough people turn up...

Scaredy_cat

•10 months ago

5 Replies

platelets are in normal range

hi everybody I wanted to give an update I’ve been on pegasys for a month today. I will take my fifth treatment. I took blood work yesterday and I saw the...

hi everybody I wanted to give an update I’ve been on pegasys for a month today....

Nc3500

•10 months ago

14 Replies

Advice pls?

Hi everyone, I was diagnosed with ET last Wednesday (still getting my head around it all). My platelet count is slightly over 1,600 and I really wanted advice...

Hi everyone, I was diagnosed with ET last Wednesday (still getting my head aroun...

Biscuitlove

•10 months ago

18 Replies

ET /Hydroxycarbamide Low JAK2 levels

Morning everyone, Help! I was diagnosed with ET in 2013 and my platelet levels were stable and under 600 during this time and I just took asprin. When I...

Morning everyone, Help! I was diagnosed with ET in 2013 and my platelet levels ...

Cassandra61

•10 months ago

29 Replies

MPN and M.E.

Is anyone suffering with both? I have heard recent research has linked MPN to stress, also ME has been linked to overwhelming experiences and situations or...

Is anyone suffering with both? I have heard recent research has linked MPN to st...

Hildrethbird

•10 months ago

5 Replies

MPN Essential Testing | How Results Impact Care & Treatment Options

From our friends at Patient Empowerment Network. This is a four minute presentation by Dr. Raajit Rampal, Memorial Sloan Kettering Cancer Center. It covers...

From our friends at Patient Empowerment Network. This is a four minute presenta...

hunter5582

•10 months ago

5 Replies

Pegasys issues

Hi everyone previously I had told you that I was having Sjogrens symptoms while on Pegasys. I stopped it and saw a rheumatologist. She was very dismissive....

Hi everyone previously I had told you that I was having Sjogrens symptoms while...

Wewo01

•10 months ago

12 Replies

Some results, at last

I had some blood sent for Next Generation Sequencing back in March, I’ve been waiting for the results. Consultant phoned this afternoon, he says I am now post...

I had some blood sent for Next Generation Sequencing back in March, I’ve been wa...

lizzziep

•10 months ago

18 Replies

Polycythemia vera: 2024 update on diagnosis, risk-stratification, and management

https://onlinelibrary.wiley.com/doi/full/10.1002/ajh.27002 « Survival and Prognosis Median survival is ⁓15 years but exceeds 35 years for patients aged...

https://onlinelibrary.wiley.com/doi/full/10.1002/ajh.27002 « Survival and Pro...

Manouche

•10 months ago

12 Replies

sunshine and skin rash

Hi All, I have been to Cyprus on holiday and the weathers is extremely hot, I have been using sunscreen and take Hydroxy & Asprin daily but after 10 days I...

Hi All, I have been to Cyprus on holiday and the weathers is extremely hot, I ...

Yoganana1

•10 months ago

13 Replies

Pegasus side effects episode 2!

Hi all Further to my previous post, today I had my consultant appt. My blood results hadn’t come through on my NHS app before my appt so I had no idea...

Hi all Further to my previous post, today I had my consultant appt. My blood r...

Lilliegarden

•10 months ago

35 Replies

Travel with ET - newly diagnosed

Hi all! Newly diagnosed with ET (MPL) in Nov/Dec 2022. Not exactly the way you want to spend Christmas holidays - having BMB (VAF 9%), diagnosed with a rare...

Hi all! Newly diagnosed with ET (MPL) in Nov/Dec 2022. Not exactly the way you w...

ETinNYC

•10 months ago

14 Replies

Besremi side effects

I started my first dose of 100 Besremi last Wed. No problems until yesterday. I felt like I was hit by a truck. Low grade fever, throwing up and achy body....

I started my first dose of 100 Besremi last Wed. No problems until yesterday. I ...

Teachme85

•10 months ago

11 Replies

Pegasys Single Use Vials?

I am taking 45mcgs weekly and do they expect me to throw away the balance of peg left after each injection? That's 135mcgs I would be throwing away. I am...

I am taking 45mcgs weekly and do they expect me to throw away the balance of peg...

russkatt

•10 months ago

17 Replies

Timing of side effects of Pegasys

Hi folks I am 60 female with PV Jak2 + and have been on Pegasys for a few months and under the care of a MPN specialist. My blood counts have been steadily...

Hi folks I am 60 female with PV Jak2 + and have been on Pegasys for a few month...

C2Cnext

•10 months ago

7 Replies

Benzene

Have MPN ppl here been exposed to benzene?I recently read it can be detrimental to the bone marrow. As a child if I got paint on my hands we would clean it off...

Have MPN ppl here been exposed to benzene?I recently read it can be detrimental ...

ERei

•10 months ago

26 Replies

missed taking my Hydroxycarbamide

hi I forgot to take my Hydroxy 1500mg last night at tea time!! So I’ve just taken them now at 11.45 am Just wondering if it’s safe to take my usual dose of...

hi I forgot to take my Hydroxy 1500mg last night at tea time!! So I’ve just take...

Kizzy03

•10 months ago

11 Replies

Ha Ha Ha Ha

Time and again I see recommendations that one should speak to an MPN specialist or someone else on one's care team - and I have a quiet chuckle and just carry...

Time and again I see recommendations that one should speak to an MPN specialist ...

quanglewangle

•10 months ago

8 Replies

mpn dr in melbourne australia

Hi does anyone know any mpn drs in mellb australia i can see i am currently seeing a haematologist but i not happy at the moment how they are managing things...

Hi does anyone know any mpn drs in mellb australia i can see i am currently seei...

jkenn

•10 months ago

2 Replies

Annoyed and Need to Vent

I had a blood that showed elevated counts in RBC’s, hemoglobin, and hematocrit. I got referred to a hematologist who did the JAK2 test and tested my EPO. JAK2...

I had a blood that showed elevated counts in RBC’s, hemoglobin, and hematocrit. ...

Lappool

•10 months ago

27 Replies

Blood tests and medicals for life insurance

When I see all those adverts for health and life insurance I'm curious as to what blood tests or medicals would be required by certain insurance companies....

When I see all those adverts for health and life insurance I'm curious as to wha...

MarkD6701

•10 months ago

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Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2023

possitive

Travel

Update, sort of good and not so good news

Et triple negative platlets gone up to 1560

itchy skin

Anagrelide

Interferon - Headache

Anyone tried omalizumab to manage the pruritus?

New investigation area for targeting bone marrow inflammation

MPN event Gloucester and S Wales 21 July

platelets are in normal range

Advice pls?

ET /Hydroxycarbamide Low JAK2 levels

MPN and M.E.

MPN Essential Testing | How Results Impact Care & Treatment Options

Pegasys issues

Some results, at last

Polycythemia vera: 2024 update on diagnosis, risk-stratification, and management

sunshine and skin rash

Pegasus side effects episode 2!

Travel with ET - newly diagnosed

Besremi side effects

Pegasys Single Use Vials?

Timing of side effects of Pegasys

Benzene

missed taking my Hydroxycarbamide

Ha Ha Ha Ha

mpn dr in melbourne australia

Annoyed and Need to Vent

Blood tests and medicals for life insurance

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