Posts - MPN Voice | HealthUnlocked

MPN Voice

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Postcovid with pegasys

Any experiencers using pegasys in addition to post covid? Were there any changes our side effects? Greetings Paul (Et + postcovid)

Any experiencers using pegasys in addition to post covid? Were there any changes...

pvdm

•3 hours ago

1 Reply

High platelets due to ET or MF is anyone on anticoagulants such as Clexane or Heparin?

If you are on anticoagulants what platelet numbers do you have? Are any of you also on hydroxycarbamide too?

If you are on anticoagulants what platelet numbers do you have? Are any of you a...

jointpain

•8 hours ago

4 Replies

ET PLATLETS

Hi i was diagnosed with ET cal r mutation a year ago I am 47 went to my gp for normal blood tests and that's hw this all started I was suffering from...

Hi i was diagnosed with ET cal r mutation a year ago I am 47 went to my gp for ...

VTAR24

•8 hours ago

1 Reply

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myelofibrosis

Hello I was wondering if anyone’s ET had progressed to myelofibrosis, what were the symptoms and was it diagnosed with a BMB? Thankyou

Hello I was wondering if anyone’s ET had progressed to myelofibrosis, what were ...

Juliet46

•12 hours ago

2 Replies

Minimising reaction at injection site?

Any top tips for managing localised reaction at interferon injection sites please? (raised red circles, about 4cm wide and itchy). Will dig out baggier...

Any top tips for managing localised reaction at interferon injection sites pleas...

RoundTheWorld

•14 hours ago

4 Replies

Polycythemia vera: past, present and future

»There has been remarkable progress in the development of novel therapeutic approaches for patients with polycythemia vera (PV). Historically, therapy goals...

»There has been remarkable progress in the development of novel therapeutic app...

Manouche

•19 hours ago

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Hematoma and Ruxolitinib

Hi. I am looking for advice or reassurance. I am on Ruxolitinib and aspirin. I am also taking prescription iron tablets due to my haemaglobin being on the...

Hi. I am looking for advice or reassurance. I am on Ruxolitinib and aspirin. I...

MWxxxx

•1 day ago

9 Replies

brief update

I went for my biopsy yesterday. The nail was taken completely taken off and a biopsy was done centrally and vertically, in the area where the dark line was...

I went for my biopsy yesterday. The nail was taken completely taken off and a ...

artydutch

•1 day ago

6 Replies

op out of MPN community

hi everyone , somehow I am logging into your community when I should only be in CLL ...---how do I change that .???? . HUL is such a great source for us with...

hi everyone , somehow I am logging into your community when I should only be in ...

craterlake

•1 day ago

4 Replies

update on raised red mark

After a day the blotch stopped feeling raised or prickly. Now nearly gone….. A Nurse at Guys has just rung. Profusely apologising for not ringing sooner,...

After a day the blotch stopped feeling raised or prickly. Now nearly gone….. ...

Mostew

•2 days ago

3 Replies

platelets increasing ?

Hello My husband had his 6 month check and platelets were 946. They seem to be going up since he has been diagnosed in 2022. Is this the trend do they tend to...

Hello My husband had his 6 month check and platelets were 946. They seem to be ...

Green1988

•2 days ago

34 Replies

MPN Specialists in Uk

Hello My name is Jackie In April of this year I was diagnosed with Intermediate Stage 2 MF. This followed 10 years receiving treatment for ET. My...

Hello My name is Jackie In April of this year I was diagnosed with Intermediate...

16Gardinia

•3 days ago

13 Replies

update on melanoma nail lesion.

Since posting I have been to a medical dermatological photographer who took photographs with dermascope and also photos for an AI software analysis. The AI...

Since posting I have been to a medical dermatological photographer who took pho...

artydutch

•4 days ago

17 Replies

A helping hand in the boudoir

just wondering if any of you gents has any experience of taking Viagra or similar. I feel my ability to maintain things in the bedroom had deteriorated over...

just wondering if any of you gents has any experience of taking Viagra or simil...

Jasbak22

•4 days ago

14 Replies

PV? I am afraid that they have it wrong

Age 37. Hb over 17 for 8 years, steadily increasing, before starting bloodletting, it was 19.6. EVF 55%, EPO 2.9. Uncertain JAK2 V617F, which according to The...

Age 37. Hb over 17 for 8 years, steadily increasing, before starting bloodlettin...

Lababba

•5 days ago

6 Replies

SCT journey update No.3

Hi all, just to give you an update on my journey towards my *Allogenic Stem cell transplant, my transplant team @ Addenbrookes Hospital are working towards me...

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

LFCLove

•5 days ago

31 Replies

Guys update

Hi all, update on marsked PVYesterday had the first appointment at Guys, wow the difference in approach is palpable!!! After developing neuropathy in both...

Hi all, update on marsked PVYesterday had the first appointment at Guys, wow the...

Spanelmad

•5 days ago

20 Replies

fatigue

Despite a healthy life style (healthy diet , regular exercise and 8-9 hours sleep) fatigue comes on fast and strong most afternoons. Eyes become heavy and...

Despite a healthy life style (healthy diet , regular exercise and 8-9 hours slee...

Peterpan2

•6 days ago

25 Replies

Renal stenosis

Hi. I started Hydreasin two years ago one capsule a day. Last year it was found I had obstruction of ureteroreanal junction. out of the blue. I suffered much...

Hi. I started Hydreasin two years ago one capsule a day. Last year it was found ...

Kelly2

•6 days ago

6 Replies

traveling with Besremi

hello community Instructions for besremi are to keep it refrigerated has anyone travelled for a month at a time or longer? Wondering how this would be...

hello community Instructions for besremi are to keep it refrigerated has anyo...

Laluna5683

•6 days ago

8 Replies

ET jak2 to PV

I have been treated with Hydrea 500mg a day since January of 2021. My bone biopsy that year indicated ET/Jak2. I am seen at a local hematologist here in...

I have been treated with Hydrea 500mg a day since January of 2021. My bone biops...

Auggie17

•6 days ago

10 Replies

Switch (forced) from Peg to Besremi?

So it would appear that there is a scarcity of Peg - went to pharmacy today and was told that they have not had Peg in a number of weeks and that they are not...

So it would appear that there is a scarcity of Peg - went to pharmacy today and ...

Solyesh

•6 days ago

3 Replies

Why are my platelets normal now with ET?

I just had my routine 4 month bloodwork and my platelets are normal at 399. They were also normal in March at 396. I haven’t had normal platelets in about 10...

I just had my routine 4 month bloodwork and my platelets are normal at 399. They...

Sharkdive1

•7 days ago

38 Replies

broken bones and MPN

I’ve never broken any bone in my body but last week I broke my ankle. I’ve been told it’s a stable fracture and have been given a boot and crutches. I do...

I’ve never broken any bone in my body but last week I broke my ankle. I’ve been ...

Val_P

•7 days ago

4 Replies

Dublin meeting

Hi I would just like to say a really big thank you to all who organised today’s meeting in Dublin. So many excellent talks by the speakers and so much...

Hi I would just like to say a really big thank you to all who organised today’s ...

Margo18

•7 days ago

2 Replies

Clinical impact of mutated JAK2 allele burden reduction in polycythemia vera and essential thrombocythemia

»The variant allele frequency (VAF) of driver mutations (JAK2, CALR) in myeloproliferative neoplasms is associated with features of advanced disease and...

»The variant allele frequency (VAF) of driver mutations (JAK2, CALR) in myelopr...

Manouche

•7 days ago

20 Replies

Osteoarthritis and Platelets rising.

This is my first post, i read daily but have never posted. I was diagnosed last year in Febuary with ET and Jak2. My Platelets when diagnosed were 1300 Feb...

This is my first post, i read daily but have never posted. I was diagnosed last ...

Kareneliz

•8 days ago

4 Replies

Mrs M

can anyone tell me if I can get sedation at the dentist on hydrea

Daisyduke40

•8 days ago

4 Replies

should I start interferon?

I’d be grateful for any advice or guidance on starting Interferon for ET CalR mutation. I was diagnosed with ET approximately 12 years ago when I was 57. I...

I’d be grateful for any advice or guidance on starting Interferon for ET CalR mu...

Reggieroo

•8 days ago

45 Replies

Chronic Venous Insufficiency

Hi all Have regularly read your posts which are extremely helpful and have posted occasionally. I have recently been diagnosed with CVI, has anyone else had...

Hi all Have regularly read your posts which are extremely helpful and have post...

lindyloulou

•8 days ago

5 Replies

Write a post or ask a question

Posts - MPN Voice | HealthUnlocked

MPN Voice

Postcovid with pegasys

High platelets due to ET or MF is anyone on anticoagulants such as Clexane or Heparin?

ET PLATLETS

myelofibrosis

Minimising reaction at injection site?

Polycythemia vera: past, present and future

Hematoma and Ruxolitinib

brief update

op out of MPN community

update on raised red mark

platelets increasing ?

MPN Specialists in Uk

update on melanoma nail lesion.

A helping hand in the boudoir

PV? I am afraid that they have it wrong

SCT journey update No.3

Guys update

fatigue

Renal stenosis

traveling with Besremi

ET jak2 to PV

Switch (forced) from Peg to Besremi?

Why are my platelets normal now with ET?

broken bones and MPN

Dublin meeting

Clinical impact of mutated JAK2 allele burden reduction in polycythemia vera and essential thrombocythemia

Osteoarthritis and Platelets rising.

Mrs M

should I start interferon?

Chronic Venous Insufficiency

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