Posts - MPN Voice | HealthUnlocked

MPN Voice

10,575 members • 14,620 posts

All posts for June 2024

MRI scan results

I have had back issues for many years but in March this flare up seemed different. I finally went private for a consultation which quickly lead to an MRI scan...

I have had back issues for many years but in March this flare up seemed differen...

NickyRobinson

•4 hours ago

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weight loss seemed impossible while taking Hydrea ! The scale finally moved !

I have always been weight conscious, I am very active and a runner plus I weight train twice a week for the past 30 years! I was diagnosed 3 years ago with PV...

I have always been weight conscious, I am very active and a runner plus I weight...

Sunnylesser

•21 hours ago

6 Replies

Reduced JAK2 allele burden

I see so many posts where people discuss reduction in JAK2 allele burden. In particular how certain medications are responsible for that reduction. I know...

I see so many posts where people discuss reduction in JAK2 allele burden. In pa...

LIGEBA

•23 hours ago

7 Replies

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RUX for PV?

I have been on run for a few months now. Blood tests are down, perfect right now. Still fatigued though. Ears ringing like crazy but thankful. Anyone else with...

I have been on run for a few months now. Blood tests are down, perfect right now...

Ginger1017

•1 day ago

6 Replies

Thank you!!!❤️

Labs were almost identical, hct 38, wbcs 2.5, plt 177, neut 1.6. Liver and kidneys were good! Going to just drop to 200mcg as hct has been going down for...

Labs were almost identical, hct 38, wbcs 2.5, plt 177, neut 1.6. Liver and kidn...

KLCTJC

•2 days ago

10 Replies

Microplastics Are Everywhere. Here’s How to Avoid Eating Them...

Microplastics Are Everywhere. Here’s How to Avoid Eating Them... Microplastics and nanoplastics are everywhere. The teeny tiny pieces of plastic have...

Microplastics Are Everywhere. Here’s How to Avoid Eating Them... Microplastics ...

PhysAssist

•2 days ago

8 Replies

A Bright Note & Travelling with Besremi

This is just a bit of a bright note. I just finished a bit of a holiday prior to a 5-day conference in Brussels, Belgium. I had to fly with the Besremi then...

This is just a bit of a bright note. I just finished a bit of a holiday prior t...

hunter5582

•2 days ago

30 Replies

rash on feet

anyone else have problems with itchy rash on feet whilst taking hydroxycarbamide ?

anyone else have problems with itchy rash on feet whilst taking hydroxycarbamide...

HazeBlue

•3 days ago

10 Replies

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

•3 days 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

•4 days ago

7 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

•4 days ago

32 Replies

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

•5 days 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

•5 days 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

•5 days 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

•5 days 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

•5 days 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

•6 days ago

11 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

•6 days ago

15 Replies

progression from et to mf

Thankyou everyone who replied to my post. Very helpful!

Juliet46

•6 days 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

•7 days 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

•7 days 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

•7 days 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

•7 days ago

10 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

•7 days ago

18 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

•7 days 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

•8 days 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

•8 days 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

•8 days 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

•8 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

•9 days ago

34 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2024

MRI scan results

weight loss seemed impossible while taking Hydrea ! The scale finally moved !

Reduced JAK2 allele burden

RUX for PV?

Thank you!!!❤️

Microplastics Are Everywhere. Here’s How to Avoid Eating Them...

A Bright Note & Travelling with Besremi

rash on feet

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 ?

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