Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,843 posts

All posts for January 2022

Two studies on INF vs Fibrosis, cellularity

A few 2017 studies I came across, likely some members have seen and posted before, here are some notes. Mostly more vagueness, but covers some of the marrow...

A few 2017 studies I came across, likely some members have seen and posted befor...

EPguy

•3 years ago

3 Replies

Cataracts

Can having PV and ET and taking medicines contribute to the rapid growth of a cataract? My vision has rapidly decreased in the last 2 month

Can having PV and ET and taking medicines contribute to the rapid growth of a ca...

Buggerbear

•3 years ago

13 Replies

Combined ttherapy

As Ruxolitinib is no longer working well, my haematologist has suggested combining either Danazol, Thalidomide or Prednisone with the Ruxo. Has.anyone any...

As Ruxolitinib is no longer working well, my haematologist has suggested combini...

skipperL

•3 years ago

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High Altitude

Hi all, This is a rather random query. I have PV,taking 45 mg Peg weekly,and having monthly venesections at the moment,which I hope will decrease soon,once the...

Hi all, This is a rather random query. I have PV,taking 45 mg Peg weekly,and hav...

Bobadog

•3 years ago

2 Replies

Hu battle

Well after having a year of stability with my platelets they are going up.again from 380 to 470..but my HU has been reduced to 1 a day to allow my haemoglobin...

Well after having a year of stability with my platelets they are going up.again ...

heathermc

•3 years ago

2 Replies

4th Vaccination

I went to the local walk in centre for my 4th jab today armed with every bit of paperwork I could think of just in case there was any doubt I should have it. I...

I went to the local walk in centre for my 4th jab today armed with every bit of ...

Nickthedevil

•3 years ago

16 Replies

Hematocrit level

Hello everyone ☺ Hi I am in the UK and my haematologist likes my hematocrit at 45, I am female 57, diagnosed in September 2021 no health issues or previous...

Hello everyone ☺ Hi I am in the UK and my haematologist likes my hematocrit at ...

Mauritiu

•3 years ago

40 Replies

Changing hospital

Hello I’m being transferred to royal Surrey guilford Does anyone here go there and is there an MPN specialist there that they could recommend. Apologies...

Hello I’m being transferred to royal Surrey guilford Does anyone here go there...

sweetpea19

•3 years ago

4 Replies

Asymptomatic!! Feel great! Should I wait?

I am female 76, take no medications, asymptomatic, my platelet count is 760,000.I asked GP my Dx. He said there is no dx you are great. Red BLood cell count 1...

I am female 76, take no medications, asymptomatic, my platelet count is 760,000....

BrookTownsend375

•3 years ago

24 Replies

Specialist

Hi anyone know of a MPN specialist in Kent U.K. area please ?

Birdlady2021

•3 years ago

20 Replies

Side effects of Interferon

Eight months ago I started taking Ruxolitinib. Prior to that I was taking HU which made me quite ill. However Ruxolitinib is not working and rather than my...

Eight months ago I started taking Ruxolitinib. Prior to that I was taking HU wh...

Heather270240

•3 years ago

22 Replies

PICC line and med change

Hi all, I sure hope you’re all doing ok and able to avoid “Rona”! For those of you not so lucky, I wish you a speedy and easy recovery. On Monday, I am get a...

Hi all, I sure hope you’re all doing ok and able to avoid “Rona”! For those of y...

Wewo01

•3 years ago

14 Replies

COVID Positive

Have been spending time in the ER and hospital taking care of my Mother, who fell and broke her hip. Unfortunately I just tested positive for COVID. Bloody...

Have been spending time in the ER and hospital taking care of my Mother, who fel...

hunter5582

•3 years ago

103 Replies

Antiviral side effects?

Afternoon all, Has anyone who takes Hydroxicarbamide yet taken Lagevrio ( also known as Molnupiravir)? I don’t have Covid. This is a question posed to me by...

Afternoon all, Has anyone who takes Hydroxicarbamide yet taken Lagevrio ( also k...

Loubprv

Volunteer•3 years ago

4 Replies

Experience of Fedratinib

Good afternoon Its never too late to wish everybody to wish everybody a happy and healthy new year !! Can anybody share their experience of changing from...

Good afternoon Its never too late to wish everybody to wish everybody a happy ...

kevinbros

•3 years ago

2 Replies

Anti–IL-6 antibody treatment modulates the proinflammatory cytokine signature in JAK2

« Because anti-inflammatory therapy for CMN is currently a widely discussed topic of debate, we propose further evaluation of anti-cytokine treatment other...

« Because anti-inflammatory therapy for CMN is currently a widely discussed topi...

Manouche

•3 years ago

1 Reply

INF vs HU, histological response (fibrosis, celluarity, etc) Surprise Result, and Possible Reasons

In this recent post "Phase 3, Trial ..." there was an unexpected result that HU was more effective than INF on marrow remission. Many of us, including the...

In this recent post "Phase 3, Trial ..." there was an unexpected result that HU...

EPguy

•3 years ago

11 Replies

Question for MPN patients in Canada

I live in BC and have JAK 2 mutation positive ET. I have been told by my MPN specialist that there is no way to have JAK2 mutation allele burden or Non-driver...

I live in BC and have JAK 2 mutation positive ET. I have been told by my MPN sp...

Planti

•3 years ago

14 Replies

Pegasys and COVID?

Hello all, This is my first time posting but I would like to say that seeing everyone else’s experiences have really helped me navigate the realm of MPNs. To...

Hello all, This is my first time posting but I would like to say that seeing eve...

924-924

•3 years ago

6 Replies

4th jab side effects

I had my 4th jab on Tuesday 3 months after my third one ☝️ and have felt so ill with the side effects I just wonder if anyone else have had the same problem...

I had my 4th jab on Tuesday 3 months after my third one ☝️ and have felt so ill...

Hughley

•3 years ago

19 Replies

Why Take Hydroxycarbamide

Hi, I have recently been told that I have ET as I have the Jak2 variation and a high platelet count of 512, so have just received Hydroxycarbamide 500mg to...

Hi, I have recently been told that I have ET as I have the Jak2 variation and a ...

dabs121

•3 years ago

57 Replies

Delayed Peg side effects

Hi, I just curious if anyone else is experiencing delayed side effects from Peg:nausea,dizziness,headaches . Apart from fatigue/mild flu like symptoms I have...

Hi, I just curious if anyone else is experiencing delayed side effects from Peg...

Bobadog

•3 years ago

7 Replies

4th jab update.

I managed to crack the enigma code and was able to book a 4th jab at a local walk in centre on Sunday 9th so I didn’t have to go down the head banging route of...

I managed to crack the enigma code and was able to book a 4th jab at a local wal...

Jonnymitts

•3 years ago

11 Replies

Update

Good morning everyone, hope you are all doing well. Just a little update from my question last week about continuing symptoms/hydroxy effectiveness etc. Just...

Good morning everyone, hope you are all doing well. Just a little update from m...

Oscarsboy

•3 years ago

7 Replies

Phase 3, Trial of Interferon-α versus Hydroxyurea in Polycythemia Vera and Essential Thrombocythemia

Key Points Rates of thrombosis and progression were low in patients with ET/PV treated with either HU or IFN in this randomized study. PEG was more effective...

Key Points Rates of thrombosis and progression were low in patients with ET/PV t...

Manouche

•3 years ago

10 Replies

4th jab for covid

Has anyone received the 4th jab for Covid yet? Any side effects? I’m due to have mine tomorrow. I’m wondering if we’ll have to be vaccinated every 3 months for...

Has anyone received the 4th jab for Covid yet? Any side effects? I’m due to have...

Cokopops

•3 years ago

4 Replies

3RD BOOSTER DATA UPDATE FROM ISRAEL STUDY

Post by MPN-MATE Admin » Tue Jan 11, 2022 3:28 pm Afternoon all... :D Found this data rather interesting, & hoped some of you might also... Sadly, the future...

Post by MPN-MATE Admin » Tue Jan 11, 2022 3:28 pm Afternoon all... :D Found thi...

socrates_8

•3 years ago

3 Replies

HYDROXYUREA ET

Looking for MPN specialist NJ, PA. Just diagnosed with thrombocythemia on 500 mg hydroxyurea for just about 3 wks plus aspirin. Platelets @ 818 potassium...

Looking for MPN specialist NJ, PA. Just diagnosed with thrombocythemia on 500 m...

patriciapugliese

•3 years ago

23 Replies

thalidomide

Hi The hematologist has raised the option of prescribing thalidomide. I am taking ruxolitnib 5mg twice daily and inject eprex once weekly zario 3 times a...

Hi The hematologist has raised the option of prescribing thalidomide. I am taki...

WeeHarry

•3 years ago

5 Replies

Where does it start with you ?

Hello everyone, hope you are all feeling……not too bad today 😁💞 Just out of interest, those with PV, where does your itches start? Like me, ankles or knees ?...

Hello everyone, hope you are all feeling……not too bad today 😁💞 Just out of int...

Yvette49

•3 years ago

6 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2022

Two studies on INF vs Fibrosis, cellularity

Cataracts

Combined ttherapy

High Altitude

Hu battle

4th Vaccination

Hematocrit level

Changing hospital

Asymptomatic!! Feel great! Should I wait?

Specialist

Side effects of Interferon

PICC line and med change

COVID Positive

Antiviral side effects?

Experience of Fedratinib

Anti–IL-6 antibody treatment modulates the proinflammatory cytokine signature in JAK2

INF vs HU, histological response (fibrosis, celluarity, etc) Surprise Result, and Possible Reasons

Question for MPN patients in Canada

Pegasys and COVID?

4th jab side effects

Why Take Hydroxycarbamide

Delayed Peg side effects

4th jab update.

Update

Phase 3, Trial of Interferon-α versus Hydroxyurea in Polycythemia Vera and Essential Thrombocythemia

4th jab for covid

3RD BOOSTER DATA UPDATE FROM ISRAEL STUDY

HYDROXYUREA ET

thalidomide

Where does it start with you ?

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