Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,842 posts

All posts for June 2024

Need some good vibes❤️

I just need some good vibes. Feel like my last hurdle before I can breathe is tomorrow. I go back to MD Anderson. I am hoping for good labs and another see...

I just need some good vibes. Feel like my last hurdle before I can breathe is t...

KLCTJC

•2 months ago

40 Replies

Age Based Risk Increase with PV

I was out on treatment I Jan due to my age (61) increasing my risk profile. I saw a different Haemotologist recently who says the age point is 65 for PV. Is...

I was out on treatment I Jan due to my age (61) increasing my risk profile. I sa...

DougyW

•2 months ago

8 Replies

Hydroxy ling term use

Hi.I have been on Hydroxy for almost 9 yrs 1500 daily 1000 sat 500 sun. No side effects Controlling platelets 500 -700 Also on 75mg asprin I queried long...

Hi.I have been on Hydroxy for almost 9 yrs 1500 daily 1000 sat 500 sun. No side ...

Lynne-G

•2 months ago

32 Replies

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Did your fatigue diminish when you switched from hydroxyurea to a JAK2 inhibitor such as ruxolitinib?

Did your fatigue diminish when you switched from hydroxyurea to a JAK2 inhibitor such as ruxolitinib? Published studies show that most patients who take JAK2...

Did your fatigue diminish when you switched from hydroxyurea to a JAK2 inhibitor...

TLJ-1

•2 months ago

18 Replies

Getting admitted to hospital in Wales update

Well after getting a call to get to A and E ten days ago because her platelets were at 4 and Hgb of 79 she had two bags of RBCs and one bag of platelets within...

Well after getting a call to get to A and E ten days ago because her platelets w...

jointpain

•2 months ago

12 Replies

beta alanine dose/timings

this has been suggested by the clinic nurse as not finding anti histamines to be helpful. My husband (Jak 2 pos, pv) has been tolerating Pegasys 45 mcg really...

this has been suggested by the clinic nurse as not finding anti histamines to be...

Scaredalone

•2 months ago

5 Replies

ET and anaemia

I have ET with my platelets running at around 1200. I take aspirin, (another condition makes medication tricky). My last GP appt I had a blood test and I'm...

I have ET with my platelets running at around 1200. I take aspirin, (another con...

lynnieb

•2 months ago

5 Replies

Pegasys causing Depression

Edit…. I spoke with my MPN Team on Monday and took their advice. I’m feeling much better now and thanks for your messages etc. Hello, I’m having a...

Edit…. I spoke with my MPN Team on Monday and took their advice. I’m feeling m...

Carol0925

•2 months ago

36 Replies

decreasing white blood cell count

hi, I was diagnosd with ET mpl last year and am on hydroxycarbimide. Had been feeling unwell since Triday. Went to ED, was told white blood cells had decreased...

hi, I was diagnosd with ET mpl last year and am on hydroxycarbimide. Had been fe...

Fairydust1111

•2 months ago

16 Replies

Significant drop in platelets

I am on 2 low-dose aspirin and therapeutic phlebotomies as needed (sometimes every 3 weeks and sometimes ever 3 - 4 months). Symptom burden has drastically...

I am on 2 low-dose aspirin and therapeutic phlebotomies as needed (sometimes eve...

LIGEBA

•2 months ago

15 Replies

progression from et to mf

Thankyou everyone who replied to my post. Very helpful!

Juliet46

•2 months ago

2 Replies

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

•2 months ago

11 Replies

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

•2 months ago

13 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

•2 months ago

2 Replies

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

•2 months ago

15 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

•2 months ago

27 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

•2 months ago

8 Replies

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

•2 months 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

•2 months ago

7 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

•2 months 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 months 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 months 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

•2 months 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

•2 months 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

•2 months ago

18 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

•2 months 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

•2 months ago

33 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

•2 months 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

•3 months 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

•3 months ago

6 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2024

Need some good vibes❤️

Age Based Risk Increase with PV

Hydroxy ling term use

Did your fatigue diminish when you switched from hydroxyurea to a JAK2 inhibitor such as ruxolitinib?

Getting admitted to hospital in Wales update

beta alanine dose/timings

ET and anaemia

Pegasys causing Depression

decreasing white blood cell count

Significant drop in platelets

progression from et to mf

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

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