Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for August 2023

perfume

sounds trival , but I noticed last few years when I use scents / perfume etc it doesn’t smell on my skin ! Just wondered if any other ladies have notice...

sounds trival , but I noticed last few years when I use scents / perfume etc it ...

Birdlady2021

•9 months ago

6 Replies

Pegasys treatment

Hi there,I am about to start my PV treatment with Pegasys. My doctor says to start at 90 mg as that's minimum dosage. However, I noticed others start at 45mg...

Hi there,I am about to start my PV treatment with Pegasys. My doctor says to sta...

kamiilos

•9 months ago

26 Replies

panicking a bit

I mistakenly took my second dose of Jakafi 20 mg 4 hrs earlier than usual. This being France and holiday month I cannot get hold of my haematology care team...

I mistakenly took my second dose of Jakafi 20 mg 4 hrs earlier than usual. This...

Anouchka

•9 months ago

8 Replies

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Necrosing spleen

Does anyone have any experience of having a spleen embolisation? If so, did their spleen carry on necrosis 5 months later? Has anyone had a drain for 5...

Does anyone have any experience of having a spleen embolisation? If so, did thei...

DeKa

•9 months ago

8 Replies

Looking for advice on skin abnormality

Hi everyone. Hoping someone can offer some advice on a mark I have found on my shin just above my ankle. I first noticed it less than a week ago, just before...

Hi everyone. Hoping someone can offer some advice on a mark I have found on my ...

MWxxxx

•9 months ago

15 Replies

Drug insurance that covers Pegasys in US

Does anyone in US on Medicare have a drug plan that covers Pegasys or has a low copay? I need to change my drug plan this year.

Does anyone in US on Medicare have a drug plan that covers Pegasys or has a low ...

Doxy46

•9 months ago

16 Replies

Doctors opinion ….

I’ve seen the consultant this afternoon. I repeated I want a second opinion from Professor Harrison, he agreed, but said he’d never referred anyone to her and...

I’ve seen the consultant this afternoon. I repeated I want a second opinion from...

lizzziep

•9 months ago

23 Replies

Essential Thrombocythaemia PIP?

Hi just thought would say hi as not been on for awhile 😊 I’m considering applying for PIP … I’ve had ET now for 27 years CALR… chemo for 22 years. I’ve had...

Hi just thought would say hi as not been on for awhile 😊 I’m considering app...

DENMOOR

•9 months ago

21 Replies

B12 deficiency

Hi, my latest blood results are showing a low level of vitamin B12 and vitamin D. I have PV and take hydroxycarbomide 500 and 1000 on alternate days....

Hi, my latest blood results are showing a low level of vitamin B12 and vitamin D...

Ellipops

•9 months ago

3 Replies

stinging under the skin with PV

for some reason I am suffering with horrible stinging.. not itching with PV. Lately it’s been practically all day long and it’s unbearable. I do take anti...

for some reason I am suffering with horrible stinging.. not itching with PV. Lat...

Airslie

•9 months ago

13 Replies

Night sweats

Hi all , last night I woke up with night sweats , I’m 70 so it’s not the menopause ! Is it connected to ET jak 2 pos . I also have a condition where my Bp...

Hi all , last night I woke up with night sweats , I’m 70 so it’s not the menop...

Birdlady2021

•9 months ago

14 Replies

jakafi and Pegasys combination for Myelofibrosis

Does anyone have both Jakafi and Pegasys? My Mpn has hinted that this might be a good combination. I think there have been trials but I can’t find them now!

Does anyone have both Jakafi and Pegasys? My Mpn has hinted that this might be ...

Yanico

•9 months ago

6 Replies

Leg pains

Hello, I hope everyone is well 😊I just wanted to ask if anyone has eg pains. I have PV nearly 2 years diagnosed, on venesections and asprin, but may be...

Hello, I hope everyone is well 😊I just wanted to ask if anyone has eg pains. I...

Mauritiu

•9 months ago

17 Replies

Serious Illness Cover (Ireland)

Hi I have been diagnosed very recently with ET + Calr. I have serious illness cover and I’m wondering if anyone in Ireland has made a claim ? Or if it...

Hi I have been diagnosed very recently with ET + Calr. I have serious illness c...

RadRuby

•9 months ago

7 Replies

New era for myelofibrosis treatment with novel agents beyond JAK2 -inhibitor monotherapy

There is an urgent unmet medical need for treatments with a novel mechanism of action that can modify the underlying pathophysiology and affect the disease...

There is an urgent unmet medical need for treatments with a novel mechanism of a...

Manouche

•9 months ago

2 Replies

haematoma -update

Mwalimu

•9 months ago

1 Reply

in search of MPN specialist

There are not any MPN specialists in Hawaii where I live, and even though I have a good oncologist, he is not that educated about ET. I wonder if anyone in...

There are not any MPN specialists in Hawaii where I live, and even though I ha...

Island-Lady

•9 months ago

19 Replies

What to do ….

Warning - long post! I’m not sure what I’m really asking here, or if I’m just looking for a sounding board. At my appointment last month my haematologist told...

Warning - long post! I’m not sure what I’m really asking here, or if I’m just lo...

lizzziep

•9 months ago

18 Replies

iron deficiency

Hi all , just found out my blood tests show low in iron ,is this common with ET etc first time I have this I take sodium tablets also because was very low and...

Hi all , just found out my blood tests show low in iron ,is this common with ET ...

Birdlady2021

•9 months ago

6 Replies

Have I progressed to PV?

Hello everyone, I have had ET, Jak2+ for 5-1/2 years and my platelets have been rising the past 1-1/2 years above normal range. Recently, I had routine blood...

Hello everyone, I have had ET, Jak2+ for 5-1/2 years and my platelets have been...

mbr8076

•9 months ago

18 Replies

kidney removable

I need to have my kidney removed urologist said it would be four hours surgery using keyhole surgery really scared with risk of bleeding and blood clots I have...

I need to have my kidney removed urologist said it would be four hours surgery u...

Hidden

•9 months ago

22 Replies

sugar and tingling with ET

I’ve cut out almost all sugar but yesterday I saw and ate a delicious looking ginger cookie after a long walk on the beach. And noticed some tingling in my...

I’ve cut out almost all sugar but yesterday I saw and ate a delicious looking gi...

Pounds11

•9 months ago

6 Replies

Fatigue with PV using Besremi

I have PV with positive Jak2. I am taking 450 mcg/ml Besremi every two weeks. Is fatigue a problem with PV or Besremi? or both? Does anyone have similar...

I have PV with positive Jak2. I am taking 450 mcg/ml Besremi every two weeks. Is...

dgar

•9 months ago

4 Replies

Haematoma

I have ET and at my last blood test (2 months ago) my platelets were well-controlled at 459. In the past I had an occlusion of a vein in my left eye (2016) and...

I have ET and at my last blood test (2 months ago) my platelets were well-contro...

Mwalimu

•9 months ago

2 Replies

fragile skin

Random question to you all….I have ET, I’m on Pegasys and have been for a few years, I also take aspirin. This year I’ve been bitten a lot (I have always been...

Random question to you all….I have ET, I’m on Pegasys and have been for a few ye...

NCB1983

•9 months ago

10 Replies

Anaemia

Well, seems that I am anaemic after all: blood tests at Marsden showef Hb of 114: low enough for me to feel lousy but not low enough for transfusion. Maybe...

Well, seems that I am anaemic after all: blood tests at Marsden showef Hb of 11...

Rachelthepotter

•9 months ago

12 Replies

Reticulocyte Count

Has anyone had this tested before diagnosis for potential PV?

Alldayeveryday

•9 months ago

6 Replies

Devastated-denied Hair Transplant

Asoon as I started on hu my hair went a lot finer and receded a little, when I started with Peg I saw the hair noticeably come out. I’m female So to have a...

Asoon as I started on hu my hair went a lot finer and receded a little, when I s...

Wyebird

•9 months ago

45 Replies

Latest update on my FEDORA trials experience and ongoing treatment.

I am being treated at University Hospital Southampton, I’ve now been on the FEDORA trial since beginning of November 2022 and am (or was) starting cycle 10...

I am being treated at University Hospital Southampton, I’ve now been on the FEDO...

Flyingsteamer

•9 months ago

8 Replies

Anyone taking Anagrelide w/ ET+CALR?

I've been taking Hydrea since 2017 and have become tolerant to it. My platelets are in the millions so we are giving Pegasys another try but I'm dealing with...

I've been taking Hydrea since 2017 and have become tolerant to it. My platelets ...

Zeppelin11

•9 months ago

17 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2023

perfume

Pegasys treatment

panicking a bit

Necrosing spleen

Looking for advice on skin abnormality

Drug insurance that covers Pegasys in US

Doctors opinion ….

Essential Thrombocythaemia PIP?

B12 deficiency

stinging under the skin with PV

Night sweats

jakafi and Pegasys combination for Myelofibrosis

Leg pains

Serious Illness Cover (Ireland)

New era for myelofibrosis treatment with novel agents beyond JAK2 -inhibitor monotherapy

haematoma -update

in search of MPN specialist

What to do ….

iron deficiency

Have I progressed to PV?

kidney removable

sugar and tingling with ET

Fatigue with PV using Besremi

Haematoma

fragile skin

Anaemia

Reticulocyte Count

Devastated-denied Hair Transplant

Latest update on my FEDORA trials experience and ongoing treatment.

Anyone taking Anagrelide w/ ET+CALR?

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