Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for November 2023

Peginterferon pre assessment

I would like to thank everyone who shared their personal experience/ helped me to make my decision on treatment. I have chosen to try peginterferon and now...

I would like to thank everyone who shared their personal experience/ helped me t...

Lyndjs

•6 months ago

2 Replies

Sharp pain in forearm followed by a big bruise. Something to worry about?

I was having tea and reading when I felt a sharp, stinging pain in my arm. This was followed by a gumball sized lump that turned into a bright red bruise. I...

I was having tea and reading when I felt a sharp, stinging pain in my arm. This...

Lena70

•6 months ago

3 Replies

Feeling Happier

I went to Guys yesterday, saw Dr Faisal from Professor Harrisons team. He was really nice and explained things really well (unlike local doctor!) He was very...

I went to Guys yesterday, saw Dr Faisal from Professor Harrisons team. He was re...

lizzziep

•6 months ago

29 Replies

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Travel Insurance

This is the first time I have posted on here although I read it daily. Has anyone experienced the following or can offer any advice regarding it. I was...

This is the first time I have posted on here although I read it daily. Has any...

NannaFlo

•6 months ago

4 Replies

PCV besremi and low platelets

dear all Sharing my latest health adventure and appreciate any insights I have PCV since 2020 and been on Besremi for just over a year. My biweekly dose has...

dear all Sharing my latest health adventure and appreciate any insights I have...

gjh8733

•6 months ago

15 Replies

New kid on the Block

Hi people, I'm new here. Will the bone, joint and muscle pain ever ease or will it come and go?

Hi people, I'm new here. Will the bone, joint and muscle pain ever ease or will ...

ArchieCatPurr

•6 months ago

5 Replies

MPN and palpitations

Good evening. I'm interested to learn if anyone else gets a lot of palpitations? It's been an issue in and off this year but a lot worse lately. I've had heart...

Good evening. I'm interested to learn if anyone else gets a lot of palpitations?...

Fivecatsandcounting

•6 months ago

9 Replies

stopping Hydrea for 8 weeks…

Good evening from Queensland 🌼 Just sharing that I saw Dr Cleary, my haematologist, today. She decided to take me off Hydrea for 8 weeks to see if my...

Good evening from Queensland 🌼 Just sharing that I saw Dr Cleary, my haematolo...

Pachena

•6 months ago

36 Replies

Ruxolitinib & raised cholesterol

I have been on Ruxolitinib for nearly 9 years now managing my primary myelofibrosis. I have been advised today that I now have a very high cholesterol level...

I have been on Ruxolitinib for nearly 9 years now managing my primary myelofibro...

Cazbolac

•6 months ago

7 Replies

Unprecedented Case: Myelofibrosis Reverts to Polycythemia Vera Phenotype

»In a rare and unprecedented case, a 72-year-old man diagnosed with JAK2V617F mutated polycythemia vera (PV) experienced a transformation to myelofibrosis...

»In a rare and unprecedented case, a 72-year-old man diagnosed with JAK2V617F m...

Manouche

•6 months ago

3 Replies

Rare Interferon relation to an autoimmune condition

-This post applies to just the rarest of circumstances and does not implicate the well established safety of IFN as we use it. - I've been checking...

-This post applies to just the rarest of circumstances and does not implicate th...

EPguy

•6 months ago

32 Replies

Reticulocyte count

My reticulocyte count has been at the high end of normal. My MPN doc said he would like it to be lower. Does anyone know what this means? I checked Dr...

My reticulocyte count has been at the high end of normal. My MPN doc said he wo...

ERei

•6 months ago

2 Replies

living with MPNs day in London

Anyone going to the Living with MPNs day on Saturday 18th Nov? I am. It’s nice to put faces to names and nice to chat. I will be heading for the Myelofibrosis...

Anyone going to the Living with MPNs day on Saturday 18th Nov? I am. It’s nice ...

MFBMT2011

•6 months ago

17 Replies

Taking Antibiotics while on Hydroxycarbamide for ET

Has anyone taken a break from Hydroxycarbamide .. if they have a chest infection and need antibiotics ..

Has anyone taken a break from Hydroxycarbamide .. if they have a chest infection...

Kilmichael

•6 months ago

15 Replies

Blated .. ps

Forgot to say 3 days after high blood pressure had it done at gp. Its back to normal. Shows what getting in flap does !!!

Forgot to say 3 days after high blood pressure had it done at gp. Its back to no...

Mostew

•6 months ago

6 Replies

Belated , how Appointment went

Was waiting till I found out if Allele Burden test was done when I had appointment at Guys , but still haven't managed , despite emails and phone calls....

Was waiting till I found out if Allele Burden test was done when I had appoint...

Mostew

•6 months ago

2 Replies

Antiinflammatory medications with Jakafi

I've read that there is a moderate risk of bleeding after using ibuprofen with Jakafi. I'd appreciate hearing reactions from people on Jakafi who have taken...

I've read that there is a moderate risk of bleeding after using ibuprofen with J...

sbs_patient

•6 months ago

17 Replies

Weight gain ?

I’m a 59 year old woman who has always had weight issues - I know how to put it on and I know how to lose it! Over the past year I have put on about a stone...

I’m a 59 year old woman who has always had weight issues - I know how to put it ...

EssexDolly

•6 months ago

49 Replies

Leg Cramps

HI fellow MPNers, Just wondering if anyone else is suffering with severe leg cramps - sometime toes too ?? These are leaving me with sore legs for days after...

HI fellow MPNers, Just wondering if anyone else is suffering with severe leg cr...

21Rosie

•6 months ago

29 Replies

My Grim anniversary, Vaccine Type and Timing

With multiple fall vaccines now in use it seems timely to share our experience and advice on the timing of them. This has been discussed briefly in various...

With multiple fall vaccines now in use it seems timely to share our experience a...

EPguy

•6 months ago

32 Replies

hello

I am new to this community having been recently diagnosed with PV. May I ask about Dr Harrison and where does she practice? I am being treated by general...

I am new to this community having been recently diagnosed with PV. May I ask abo...

rmfisch

•6 months ago

7 Replies

Advice appreciated.

As readers on this Forum may know, I’m 80 and was diagnosed withCALR + ET 18 months ago. I’m on 75mg aspirin daily and 90mcg Peg interferon fortnightly....

As readers on this Forum may know, I’m 80 and was diagnosed withCALR + ET 18 mon...

gilded

•6 months ago

15 Replies

Start of Pegasus

I have been on Hyrdrox for over a year and Mayo had me start switching to Pegasus three weeks ago. I am at low dose 2 mil and still taking my Hydrox 3 times a...

I have been on Hyrdrox for over a year and Mayo had me start switching to Pegasu...

MDI55

•6 months ago

11 Replies

What to ask?

I’ve got an appointment with Professor Harrison next week, hopefully getting advice on MF treatment. Recently someone asked what to ask doctors about treatment...

I’ve got an appointment with Professor Harrison next week, hopefully getting adv...

lizzziep

•6 months ago

8 Replies

Lots of bad stuff happening, what to do?

I was diagnosed with ET close to 3 years ago, January. Put on Hydroxyurea, 500mg 3x a week and all seemed good with platelets.I just turned 69 in October, am...

I was diagnosed with ET close to 3 years ago, January. Put on Hydroxyurea, 500m...

Androg

•6 months ago

18 Replies

Interesting summaries from MPN Hub

The role of JAK2V617F allele burden in PV For anyone who missed the article in Blood by Moliterno et al, this is a nice brief summary...

The role of JAK2V617F allele burden in PV For anyone who missed the article in ...

hunter5582

•6 months ago

7 Replies

Coincidence?

I was doing very well on peg interferon, which I started in July. I felt loads better than I had for a long time, with negligible side effect. However, the...

I was doing very well on peg interferon, which I started in July. I felt loads b...

lizzziep

•6 months ago

6 Replies

New MF drugs in development by Incye

Hi All, just as a quick update, Incyte has started the phase 1 trial for the CALR anyibody and they also disclosed a new potential treatment for the JAK...

Hi All, just as a quick update, Incyte has started the phase 1 trial for the CAL...

CanadaG

•6 months ago

10 Replies

SCT update

I’ve not posted for a while. I’m now on day +89 after my SCT, recovery is taking a while but I’m managing to do a bit more every few days, then I have a...

I’ve not posted for a while. I’m now on day +89 after my SCT, recovery is taki...

SRH55

•6 months ago

41 Replies

ET following Covid Vaccination

I developed Essential Thrombocythemia immediately following my Covid Vaccination and first Booster - lost 1 1/2 stone and platelet count shot through the roof...

I developed Essential Thrombocythemia immediately following my Covid Vaccination...

Happydolphin

•6 months ago

9 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2023

Peginterferon pre assessment

Sharp pain in forearm followed by a big bruise. Something to worry about?

Feeling Happier

Travel Insurance

PCV besremi and low platelets

New kid on the Block

MPN and palpitations

stopping Hydrea for 8 weeks…

Ruxolitinib & raised cholesterol

Unprecedented Case: Myelofibrosis Reverts to Polycythemia Vera Phenotype

Rare Interferon relation to an autoimmune condition

Reticulocyte count

living with MPNs day in London

Taking Antibiotics while on Hydroxycarbamide for ET

Blated .. ps

Belated , how Appointment went

Antiinflammatory medications with Jakafi

Weight gain ?

Leg Cramps

My Grim anniversary, Vaccine Type and Timing

hello

Advice appreciated.

Start of Pegasus

What to ask?

Lots of bad stuff happening, what to do?

Interesting summaries from MPN Hub

Coincidence?

New MF drugs in development by Incye

SCT update

ET following Covid Vaccination

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