Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,730 posts

All posts for July 2024

Interferon and skin

I have been on Interferon for a few years but over the last 2 my skin is suffering, loads of dry and itchy skin, anyone else having similar issues?

I have been on Interferon for a few years but over the last 2 my skin is sufferi...

shiftzz

•8 days ago

5 Replies

BMB ordeal

Maybe things are different in the UK but when my hematologist wanted to do the bmb in office I refused -having had prior experience with biopsies I knew the...

Maybe things are different in the UK but when my hematologist wanted to do the b...

Wendrew

•9 days ago

10 Replies

SCT journey update No.4

Hi all, just to give you an update on my journey towards my *Allogenic Stem cell Transplant. Last tests @ Addenbrookes yesterday, was a very early start as...

Hi all, just to give you an update on my journey towards my *Allogenic Stem cell...

LFCLove

•9 days ago

19 Replies

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Central point

Am I pipe dreaming or can we get a central point for hospitals doctors dentists. Dentists because I was on tablets for 11 years and they dissolved some of my...

Am I pipe dreaming or can we get a central point for hospitals doctors dentists...

mag123ben

•9 days ago

4 Replies

LOW IRON, Platelets AND PV

I am a 73 female, English but living in New Zealand for some months each year. I was diagnosed in May 24 with PV after a positive JAK 2 test. (Hb 164 and HCT...

I am a 73 female, English but living in New Zealand for some months each year. I...

Hilary777

•10 days ago

11 Replies

Medical exemption certificate in the U.K.

Hello lovely people. I am curious as to whether others with an MPN in the U.K. are eligible for a Medical Exemption Certificate? I am 55 and I have ET CALR,...

Hello lovely people. I am curious as to whether others with an MPN in the U.K. a...

Happysnapper

•10 days ago

10 Replies

Bone marrow biopsy

Hi, hope you are all keeping well. I am Jak 2 on Hydroxycarbamide for the past 10months. My platelets were down to 475 but my last blood test showed they were...

Hi, hope you are all keeping well. I am Jak 2 on Hydroxycarbamide for the past 1...

Lilbert

•10 days ago

39 Replies

Update High Platelets - Thoughts Please….?

Hi Everyone, I’ve been documenting my story on here both for advice for myself and also for others to follow should they be in a similar situation…. Quick...

Hi Everyone, I’ve been documenting my story on here both for advice for myself a...

Purdy13

•10 days ago

23 Replies

Who to complain to !

We should all get together and complain. Or am I still in a mood and should be good to take it. My daughter isn't well but she's my carer and drives her car ....

We should all get together and complain. Or am I still in a mood and should be g...

mag123ben

•10 days ago

10 Replies

After 3 o/clock

Such hassle , chemist can't get prescription, even though I was told on Monday to get them from chemist. Rang surgery,Secretary had me in tears, said I never...

Such hassle , chemist can't get prescription, even though I was told on Monday t...

mag123ben

•11 days ago

12 Replies

Blood test results.

Had routine bloods taken for hospital and dr.surgery. results from hospital going right way.. and to get more tablets from Dr .Surgery reception said to get...

Had routine bloods taken for hospital and dr.surgery. results from hospital goin...

mag123ben

•11 days ago

5 Replies

inactivity

Can anyone tell me what causes the "inactivity" related to ET? Is it the JAK2 mutation, the ET itself, or is it the hydroxyurea that I take that causes it?...

Can anyone tell me what causes the "inactivity" related to ET? Is it the JAK2 m...

johnnyjumpups

•12 days ago

8 Replies

Time to go to transplant

Yesterday, my MPN specialist recommended that it's time to do a transplant. Even though I'm only intermediate-1 post-ET MF (CALR, ASXL1) and generally...

Yesterday, my MPN specialist recommended that it's time to do a transplant. Eve...

Hatchie

•12 days ago

26 Replies

Update

I finally got hold of someone in the clinic today, explained I was concerned about the sudden appearance of blasts in my blood count, she said she would have a...

I finally got hold of someone in the clinic today, explained I was concerned abo...

lizzziep

•12 days ago

6 Replies

A month into Pegasys, Australia …

hi, I was diagnosed with ET JAk2 positive in Jan 2023 and confirmed with BMB in May 2023. On low dose of Hydrea for 6 months tho with lots of side effects, I...

hi, I was diagnosed with ET JAk2 positive in Jan 2023 and confirmed with BMB in ...

Pachena

•12 days ago

15 Replies

Taking extra Hydrea on weekends

Hi all, Hope everybody is keeping as well as possible and you can enjoy the summer days, even with the strange weather this year :) Personally, I have been...

Hi all, Hope everybody is keeping as well as possible and you can enjoy the summ...

JustKeepSw1mming

•12 days ago

27 Replies

Pegasys approved for PV and ET in Europe, Good news?

https://www.ema.europa.eu/en/medicines/human/variation/pegasys It looks like Pegasys has been approved by the European EMA for treating PV and ET. Although...

https://www.ema.europa.eu/en/medicines/human/variation/pegasys It looks like Pe...

SamHathaway1800

•13 days ago

6 Replies

PV - HU vs Jakafai, Insurance Denied Jakafai

So I've been on Peg IFN for close to 5 years and my body can't seem to tolerate it anymore. My white counts just keep going lower. Current counts at...

So I've been on Peg IFN for close to 5 years and my body can't seem to tolerate ...

jon1972

•14 days ago

12 Replies

Besremi

I have Polycythamy vera.Now I have high hemoglobin.7,28.Hematocrit is slightly increased-50.8PLT 420.But Leukozyten are increasing all the time.WBC was...

I have Polycythamy vera.Now I have high hemoglobin.7,28.Hematocrit is slightly i...

bolonka

•14 days ago

2 Replies

stomach ulcer

I have written here recently that I have ET/ Jak2 and am showing signs of progressing to PV. I got a phlebotomy about a month ago and since then have...

I have written here recently that I have ET/ Jak2 and am showing signs of progre...

Auggie17

•14 days ago

7 Replies

Cold hands and feet!

Hi, I have been suffering from extremely cold hands and feet from long before I was diagnosed last year. Anyone else have the same symptom relating to ET JAK2?

Hi, I have been suffering from extremely cold hands and feet from long before I ...

ArchieCatPurr

•14 days ago

6 Replies

JAK2 results

HiHoping someone may know the answer to this as I do not have appt till Aug to ask. When I was first diagnosed with PV in June 22 and had first JAK2 Bloods...

HiHoping someone may know the answer to this as I do not have appt till Aug to a...

Cityreach

•14 days ago

10 Replies

Concerned about results

I’ve just been comparing some blood test results, first two from haematology, third from GP 29th May 2024 RBC 2.68 10*12/L WBC 5.5 Haemoglobin 78 g/L...

I’ve just been comparing some blood test results, first two from haematology, th...

lizzziep

•14 days ago

23 Replies

Waste of time

That was a waste of time. Waited for hospital telephone appointment. No need to take hydro tablets extra weekends. That's good. Where do I get my tablets,...

That was a waste of time. Waited for hospital telephone appointment. No need to ...

mag123ben

•14 days ago

6 Replies

Wales.

I live near Carmarthen. South wales. I have blood cancer MPN Essential thrombocythemia. Does anyone else have this condition as I haven't been given a PALS or...

I live near Carmarthen. South wales. I have blood cancer MPN Essential thrombocy...

mag123ben

•14 days ago

6 Replies

Rash Impacted by Pegasys?

Hi, I am 71, have had PV (exon 12) for about 4 years, been on pegasys for 3 years. Presently apparently in CHR, with maintenance dose of pegasys 45 mcg every...

Hi, I am 71, have had PV (exon 12) for about 4 years, been on pegasys for 3 yea...

gvibes

•15 days ago

7 Replies

Low ferritin

I was diagnosed with PV in November 2020. Initially, I had a few phlebotomies to reduce my hematocrit but thankfully I've passed my last three blood tests and...

I was diagnosed with PV in November 2020. Initially, I had a few phlebotomies to...

M1ndMyB100d

•16 days ago

9 Replies

MITHRIDATE trial

This is nothing new but I've had trouble remembering the title. This is a large (n= 586) phase 3 trial of Rux vs BAT where BAT is HU and IFN. I think...

This is nothing new but I've had trouble remembering the title. This is a large...

EPguy

•16 days ago

3 Replies

Jakafi/Weight Gain

I will preface this by saying that I am truly grateful that I am feeling better on Jakafi. It has only been two months, but my numbers are better and most...

I will preface this by saying that I am truly grateful that I am feeling better ...

Miriammusic

•17 days ago

54 Replies

Fatigue and joint , muscle pain

Hi I have PV been taking hydroxy for 5 years. I have terrible joint pain ,muscle pain and severe fatigue that comes and goes. My last bout lasted 6 weeks of...

Hi I have PV been taking hydroxy for 5 years. I have terrible joint pain ,muscle...

Reikiray

•17 days ago

22 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2024

Interferon and skin

BMB ordeal

SCT journey update No.4

Central point

LOW IRON, Platelets AND PV

Medical exemption certificate in the U.K.

Bone marrow biopsy

Update High Platelets - Thoughts Please….?

Who to complain to !

After 3 o/clock

Blood test results.

inactivity

Time to go to transplant

Update

A month into Pegasys, Australia …

Taking extra Hydrea on weekends

Pegasys approved for PV and ET in Europe, Good news?

PV - HU vs Jakafai, Insurance Denied Jakafai

Besremi

stomach ulcer

Cold hands and feet!

JAK2 results

Concerned about results

Waste of time

Wales.

Rash Impacted by Pegasys?

Low ferritin

MITHRIDATE trial

Jakafi/Weight Gain

Fatigue and joint , muscle pain

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