Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,730 posts

All posts for July 2022

Pegasys - Withdrawal side effects in the days prior to injection

Hi everyone, I'm Charlie, I'm 27 and have ET. I've been on Peg-interferon for the last year and I just wondered if anyone else experiences worse symptoms in...

Hi everyone, I'm Charlie, I'm 27 and have ET. I've been on Peg-interferon for t...

cgcheets

•2 years ago

19 Replies

hydroxyurea at young age?

Who else is using hydroxyurea at young age? For ET TREATMENT??? Is it okay to use this treatment at young age ??? Thank you ahead for the reply ….

Who else is using hydroxyurea at young age? For ET TREATMENT??? Is it okay to us...

shiela23

•2 years ago

34 Replies

telephone or face to face consultations?

Can anyone tell me if St Thomas and Guys are offering telephone appts as well as face to face consultations. I would like to minimise the number of times I...

Can anyone tell me if St Thomas and Guys are offering telephone appts as well as...

Vicki_02

•2 years ago

12 Replies

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NAC (N-Acetylcysteine) at the FDA and vs oral glutathione

Some of us are taking NAC supplement for its antinflammatory effects. It's also subject of this phase 1-2 MPN trial looking for dose and MPN-TSS symptom...

Some of us are taking NAC supplement for its antinflammatory effects. It's also...

EPguy

•2 years ago

13 Replies

PV and gout?

I've been having some gout-like toe pain lately, and I've just learned that my serum uric acid is high, so I'm presuming that the pain is coming from the...

I've been having some gout-like toe pain lately, and I've just learned that my s...

sbs_patient

•2 years ago

25 Replies

PV Itching on Holiday

Hi just an observation regards itching. I have just recently had a DX of PV. For years I have had itching/aquagenic pruritus, both hot and cold temps and...

Hi just an observation regards itching. I have just recently had a DX of PV. ...

Hocus58

•2 years ago

3 Replies

antivirals

Anyone any experience of taking the antivirals? Any side effects? any regrets? I was hoping I’d escaped. I’ve had 5 jabs! thanks

Anyone any experience of taking the antivirals? Any side effects? any regrets?...

Linnie5

•2 years ago

34 Replies

sun sensitivity

hello everyone, I was just wondering if anyone else has had a problem with sun sensitivity whilst taking Peg, dose of 45mcg weekly. I’m ET jak-2. Any...

hello everyone, I was just wondering if anyone else has had a problem with su...

Jynx93

•2 years ago

15 Replies

JAK-2 TEST

how long does it take to get results from JAK-2 test . My husband was diagnosed with Abnormally high red blood cell count and Abnormally high platelet...

how long does it take to get results from JAK-2 test . My husband was diagn...

CelticCrow68

•2 years ago

19 Replies

Pv interferon 0.5ml dosage have itching

Past month I have been suffering from itching on both arms and stomach. Tried e45 and now amphetamine tablet and Eumovate cream twice a day. Still itching....

Past month I have been suffering from itching on both arms and stomach. Tried e...

Taz777

•2 years ago

9 Replies

Breaks PV down Barney style!

https://www.youtube.com/watch?v=pWGRT17SazA I know most here know all of this but maybe some don’t or some new people may find this helpful.

https://www.youtube.com/watch?v=pWGRT17SazA I know most here know all of this b...

Barbiebreath

•2 years ago

9 Replies

spleen scan and latest bloods

just another update. I went for my abdomen scan on Sunday and he seemed positive but not got full results. He said he needed to scrutinise them more. I have...

just another update. I went for my abdomen scan on Sunday and he seemed posit...

Notdiagnosed

•2 years ago

6 Replies

covid booster vaccine

hello, does anyone know how long between covid booster vaccinations?I had my fourth vaccination on the March 31st

hello, does anyone know how long between covid booster vaccinations?I had my f...

Dream23

•2 years ago

14 Replies

My latest CBCs etc on Besremi

A bunch of us are posting our latest. Here's my summary. -Past 5 Bes doses were 75,75,100,100,120. -All the counts we watch are doing well. HCT= 43.7,...

A bunch of us are posting our latest. Here's my summary. -Past 5 Bes doses we...

EPguy

•2 years ago

5 Replies

natural remedies

hi everyone I been to see the haematologist yesterday my first face to face appointment, I had another blow to the brain, when she explained I have another...

hi everyone I been to see the haematologist yesterday my first face to face ap...

Tyray123

•2 years ago

24 Replies

Test Results

I was diagnosed with ET in January. My doctor is concerned because my platelets are not going down, started out at over 600, went down to 400 but now going...

I was diagnosed with ET in January. My doctor is concerned because my platelets ...

AndyKay

•2 years ago

7 Replies

Test Results

I was diagnosed with ET in January. My doctor is concerned because my platelets are not going down, started out at over 600, went down to 400 but now going...

I was diagnosed with ET in January. My doctor is concerned because my platelets ...

AndyKay

•2 years ago

5 Replies

My HCT is coming down!

I had my blood drawn on 7/14- my HCT was 47.5. My RBC and Platelets were high but down from the blood draw before that. 3rd Besremi shot on 7/18. I went...

I had my blood drawn on 7/14- my HCT was 47.5. My RBC and Platelets were high bu...

Barbiebreath

•2 years ago

12 Replies

PV and weak wrist

Hi everyone, can I ask if anyone suffers with weak wrists with PV,, on occasions my wrist just goes with weakness and a pain shoots through it does pass...

Hi everyone, can I ask if anyone suffers with weak wrists with PV,, on occasio...

Cityreach

•2 years ago

4 Replies

COVID tips – still about and on the rise

A timely reminder from the NHS that COVID is still about, and it is on the rise, and not just in London. Please view this very short animation from the NHS...

A timely reminder from the NHS that COVID is still about, and it is on the rise,...

Mazcd

Partner•2 years ago

4 Replies

mylefibrosis and stomach issues

hi I wondered if anyone else has developed stomach issue since being diagnosed I was diagnosed many years ago with primary mylefibrosis but 3 years ago I...

hi I wondered if anyone else has developed stomach issue since being diagnosed I...

Leighcox85

•2 years ago

6 Replies

CBD Isolate Oil

CBD or not CBD. Hi all have been thinking of trying CBD isolate oil to help anxiety. Have read that this alongside blood thinners, I am on clopidogrel may...

CBD or not CBD. Hi all have been thinking of trying CBD isolate oil to help a...

Smudger0122

•2 years ago

13 Replies

New ET Dx: night sweats and chills?

My husband (85yrs) recently dx'd with ET. JAK2 neg. CALR positive. (My brother has PV so he told me about this site. ) Platelets went from 500's to over 900...

My husband (85yrs) recently dx'd with ET. JAK2 neg. CALR positive. (My brother ...

endlessfun

•2 years ago

14 Replies

Update 6.8

The news is generally looking pretty good. The last CBC on 07/05 shows HCT back down to 44.3% - at target. Seems like 150mcg Besremi is the right dose for...

The news is generally looking pretty good. The last CBC on 07/05 shows HCT back...

hunter5582

•2 years ago

42 Replies

update

I have pv and lupus diagnosed January 2022. All my head is messed up with the news I was allocated a key worker but never hear anything from her....

I have pv and lupus diagnosed January 2022. All my head is messed up with the...

Mandz12

•2 years ago

19 Replies

hydroxycarbamide and rash have ET jak

hi everyone been on meds 6 weeks and have a rash on my tummy and back what meds's help this thankyou

hi everyone been on meds 6 weeks and have a rash on my tummy and back what meds...

Daisyduke40

•2 years ago

7 Replies

scalp burning

My scalp has been burning Mainly in a spot in the back of my head. When I’m walking or driving it stops. Is this related to ET? It started about the time I...

My scalp has been burning Mainly in a spot in the back of my head. When I’m wal...

Winchie

•2 years ago

15 Replies

PV and fainting

hi all Hope you are taking care in this heat. I had a fainting episode at work today and wondered if there’s anything PV related. I’m aware it’s...

hi all Hope you are taking care in this heat. I had a fainting episode at wor...

Sanga

•2 years ago

5 Replies

Oral suirgery for people with PV

I have a problem with a wisdom tooth, and I'm concerned that my dentist may tell me that the tooth can't be saved and must be extracted. Has anyone with PV (or...

I have a problem with a wisdom tooth, and I'm concerned that my dentist may tell...

sbs_patient

•2 years ago

10 Replies

PV is now interfering with my sleep, and sitting on the couch.

Have you seen the movie Universal Soldier? This is my life now. He used to get so hot he would take ice baths. That wouldn't be good for me because we all...

Have you seen the movie Universal Soldier? This is my life now. He used to get...

lebowski42

•2 years ago

9 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2022

Pegasys - Withdrawal side effects in the days prior to injection

hydroxyurea at young age?

telephone or face to face consultations?

NAC (N-Acetylcysteine) at the FDA and vs oral glutathione

PV and gout?

PV Itching on Holiday

antivirals

sun sensitivity

JAK-2 TEST

Pv interferon 0.5ml dosage have itching

Breaks PV down Barney style!

spleen scan and latest bloods

covid booster vaccine

My latest CBCs etc on Besremi

natural remedies

Test Results

Test Results

My HCT is coming down!

PV and weak wrist

COVID tips – still about and on the rise

mylefibrosis and stomach issues

CBD Isolate Oil

New ET Dx: night sweats and chills?

Update 6.8

update

hydroxycarbamide and rash have ET jak

scalp burning

PV and fainting

Oral suirgery for people with PV

PV is now interfering with my sleep, and sitting on the couch.

Search posts

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Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2022

﻿Pegasys - Withdrawal side effects in the days prior to injection

hydroxyurea at young age?

telephone or face to face consultations?

NAC (N-Acetylcysteine) at the FDA and vs oral glutathione

PV and gout?

PV Itching on Holiday

antivirals

sun sensitivity

﻿JAK-2 TEST

﻿Pv interferon 0.5ml dosage have itching

Breaks PV down Barney style!

﻿spleen scan and latest bloods

﻿covid booster vaccine

My latest CBCs etc on Besremi

natural remedies

Test Results

Test Results

My HCT is coming down!

﻿PV and weak wrist

COVID tips – still about and on the rise

mylefibrosis and stomach issues

﻿CBD Isolate Oil

New ET Dx: night sweats and chills?

Update 6.8

﻿update

﻿hydroxycarbamide and rash have ET jak

scalp burning

PV and fainting

Oral suirgery for people with PV

﻿PV is now interfering with my sleep, and sitting on the couch.

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

Pegasys - Withdrawal side effects in the days prior to injection

JAK-2 TEST

Pv interferon 0.5ml dosage have itching

spleen scan and latest bloods

covid booster vaccine

PV and weak wrist

CBD Isolate Oil

update

hydroxycarbamide and rash have ET jak

PV is now interfering with my sleep, and sitting on the couch.