Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for June 2023

Hmmmm

Is the itching you re experiencing like having thrush under your skin and a blow torch on the top. In other words a burning type of itch? If so this is the...

Is the itching you re experiencing like having thrush under your skin and a blow...

Loubprv

Volunteer•11 months ago

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Beware of sunshine!

Hello all. I’m aware that being on Hydroxy you must be careful in the sunshine. But in the shade too? I sat in the garden yesterday for no more than 20...

Hello all. I’m aware that being on Hydroxy you must be careful in the sunshine. ...

Cokopops

•11 months ago

14 Replies

Change in antiviral provision

I assume all those in the Uk classified as extremely vulnerable have received as I did a mail informing them that the provision of antivirals is changing in...

I assume all those in the Uk classified as extremely vulnerable have received as...

Inclement

•11 months ago

17 Replies

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Changing meds

My insurance recently denied paying for Besremi, which was working very well for me except for some problems with my eyes. Today I got my patient education for...

My insurance recently denied paying for Besremi, which was working very well for...

BuckskinAsia

•11 months ago

2 Replies

Hydroxycarbamide & muscle pain

has anyone with ET JAK2+?and taking Hydroxycarbamide found that after being on HU they have started getting muscle pain especially in upper back? I was put on...

has anyone with ET JAK2+?and taking Hydroxycarbamide found that after being on H...

130396

•11 months ago

30 Replies

Where to get a Allele burden (quantitive) Jak2 (V617F)

I am looking to find out what percentage my allele burden is , I am in Scotland and local hospital doesnt do quantitive allele burden test, only positive or...

I am looking to find out what percentage my allele burden is , I am in Scotland ...

ainslie

•11 months ago

23 Replies

Itching

Does anyone have itching that is NOT on the palms of their hands or soles of their feet? Lately I've had it on my chest & my neck. My hematologist says it is...

Does anyone have itching that is NOT on the palms of their hands or soles of the...

ERei

•11 months ago

25 Replies

Long distance flying and ET

Hi All I know this question has been asked before, but not recently, so things might have changed. I'm 74, diagnosed with ET Jak2 about a year ago and am on...

Hi All I know this question has been asked before, but not recently, so things ...

NibsNanna

•11 months ago

11 Replies

mouth ulcers

anyone have mouth ulcers on tongue whilst taking hydroxycarbamide ? I have ET jak 2 Painful mouth ulcers on my tongue. Any suggestions how to treat ? Thanks...

anyone have mouth ulcers on tongue whilst taking hydroxycarbamide ? I have ET j...

HazeBlue

•11 months ago

19 Replies

significant drop in platelets after Covid Shot

I am wondering if anyone else experienced this, I received my first Covid shot in April. Within the next 3 weeks I had my labs drawn for my monthly...

I am wondering if anyone else experienced this, I received my first Covid shot i...

Kids0901

•11 months ago

5 Replies

SWOLLEN FINGERS & BLEEDING AT THE CUTICLE?

SWOLLEN FINGERS AT CUTICLE? Sun Jun 04, 2023 12:14 pm Afternoon all... Been a while since my last Post on Voice, and it's also been an interesting last...

SWOLLEN FINGERS AT CUTICLE? Sun Jun 04, 2023 12:14 pm Afternoon all... Be...

socrates_8

•11 months ago

16 Replies

Side effects from weekly injections

My MPN treatment Hi all, been injecting for over a year with 90mgs of interferon weekly. I have been getting worse & worse with muscle, joint pain &...

My MPN treatment Hi all, been injecting for over a year with 90mgs of interfer...

Pappafraser

•11 months ago

6 Replies

Blurry Vision Issues

I know I am 67 now and changes happen but I had never had a problem with my long vision until I started taking Hydrox. Has anyone experienced vision changes...

I know I am 67 now and changes happen but I had never had a problem with my long...

MDI55

•11 months ago

19 Replies

The difference between ET and JAK2 ET…?

I’m a little confused about these two. My SIL doesn’t have the JAK2 tho I do have it. I don’t understand the differences between the two diagnoses 😊 I am...

I’m a little confused about these two. My SIL doesn’t have the JAK2 tho I do hav...

Pachena

•11 months ago

8 Replies

Did I have TIA or something else?

I have PV and take Besremi with blood counts under control. Four days ago I had an unknown medical event that ended with an ambulance visit. I was at home...

I have PV and take Besremi with blood counts under control. Four days ago I had ...

PupsBestFriends

•11 months ago

13 Replies

Platelet raise

Hi, just wonder if anyone has had the following issues. Been on Hydroxy now nearly two years and suddenly platelets are on the rise again, back up to 460...

Hi, just wonder if anyone has had the following issues. Been on Hydroxy now nea...

Oscarsboy

•11 months ago

52 Replies

Shift work with an MPN

Hello Just asking if anyone has experience with working nights, irregular shifts with an MPN & the effects I’m trying to get an alleviation with my job to do...

Hello Just asking if anyone has experience with working nights, irregular shift...

Melaniem59

•11 months ago

5 Replies

hives

hi was just wondering has anyone broken out in hives in different places but then they go away after your Pegasus injection?

hi was just wondering has anyone broken out in hives in different places but th...

Nc3500

•11 months ago

3 Replies

Ruxilinitib

Has anyone managed to get Rux covered by private insurance.? If so, who was the insurer and what stage were you? Was it difficult?….

Has anyone managed to get Rux covered by private insurance.? If so, who was the ...

artydutch

•11 months ago

22 Replies

weight loss on Peg

Curious to see if anyone else has lost weight while on Peg interferon? I’ve suddenly started to lose weight in the last month. Probably 6 lbs without trying....

Curious to see if anyone else has lost weight while on Peg interferon? I’ve sudd...

Airslie

•11 months ago

20 Replies

return visit to doctor this week

I was diagnosed with jak2 positive ET 3 months ago. Platelet count was 620 and was randomly found during routine blood work. I had been having headaches, but...

I was diagnosed with jak2 positive ET 3 months ago. Platelet count was 620 and w...

Highplatelets

•11 months ago

9 Replies

Vitamin B12

Hi everyone I'm going on holiday to Cyprus in July and I usually start taking vitamin b12 to prevent mosquito bites a week or so before I go and one a day...

Hi everyone I'm going on holiday to Cyprus in July and I usually start taking ...

Blonde25

•11 months ago

14 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2023

Hmmmm

Beware of sunshine!

Change in antiviral provision

Changing meds

Hydroxycarbamide & muscle pain

Where to get a Allele burden (quantitive) Jak2 (V617F)

Itching

Long distance flying and ET

mouth ulcers

significant drop in platelets after Covid Shot

SWOLLEN FINGERS & BLEEDING AT THE CUTICLE?

Side effects from weekly injections

Blurry Vision Issues

The difference between ET and JAK2 ET…?

Did I have TIA or something else?

Platelet raise

Shift work with an MPN

hives

Ruxilinitib

weight loss on Peg

return visit to doctor this week

Vitamin B12

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