Posts - MPN Voice | HealthUnlocked

MPN Voice

10,784 members • 14,980 posts

All posts for January 2024

changing medication

hi Wondering what people’s thoughts or experiences are on being on rux? I have PV diagnosed 8 years ago and all good with venesection and aspirin only....

hi Wondering what people’s thoughts or experiences are on being on rux? I hav...

Sanga

•9 months ago

7 Replies

gastroscopy

Im anxious to know uf any member of the forum has had a Gastroscopy while taking Hydroxycarbamide and Xralto ( blood thinner) . Thank you

Im anxious to know uf any member of the forum has had a Gastroscopy while taking...

Kilmichael

•9 months ago

11 Replies

ET and temperature control

Does anyone else suffering from ET, suffer from feeling very cold, or sometimes hot? Not sure if it is an ET symptom.

Does anyone else suffering from ET, suffer from feeling very cold, or sometimes ...

Hidden

•9 months ago

18 Replies

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Molecular remission of MF which is being treated with PEG

Hello fam, Last week I was told by an MPN specialist that my blood counts indicate that I might have achieved molecular remission. This is yet to be...

Hello fam, Last week I was told by an MPN specialist that my blood counts indi...

LucyAshtonGeering

•9 months ago

23 Replies

Pneumonia vaccine

Has anyone over 65 received the Pneumonia vaccine-Prevnar 20? I have ET Jak2+ and it was suggested by my GP. I read somewhere that we have to be careful with...

Has anyone over 65 received the Pneumonia vaccine-Prevnar 20? I have ET Jak2+ an...

mbr8076

•9 months ago

35 Replies

Re. High potassium

Thank you all for your replies. I feel better knowing it seems quite common unfortunately my GP doesnt seem familiar with this. I think I will get in...

Thank you all for your replies. I feel better knowing it seems quite common unfo...

Mrbeasley

•9 months ago

1 Reply

Jack2 symptoms but good blood results.

I hope someone here been trough same things and could bring some experience or advice. I have bad feelings of tingling and numbness in my left side of body ,...

I hope someone here been trough same things and could bring some experience or a...

Inverter

•9 months ago

26 Replies

ET and dupixent

44 year old with ET jak2. I am on 81mg daily aspirin only. I have nasal polyps and mild asthma. I have not been able to smell for years. Is anyone with ET...

44 year old with ET jak2. I am on 81mg daily aspirin only. I have nasal polyps a...

JT1622

•9 months ago

1 Reply

nephrectomy

hi I’m just after a bit of advice I had my right kidney removed 4 weeks ago it was removed robotically and took over 7 hours due to the size of a non cancerous...

hi I’m just after a bit of advice I had my right kidney removed 4 weeks ago it w...

higham23

•9 months ago

2 Replies

spleen

Does anyone know how fast a spleen enlarges in MF. Is this weeks, months, years?

Does anyone know how fast a spleen enlarges in MF. Is this weeks, months, years?...

artydutch

•9 months ago

7 Replies

Experiences and Research on Managing PV with Autophagy, Intermittent Fasting, and Vegan Diet

Hello everyone, I am reaching out to the community for insights and personal experiences regarding the management of Polycythemia Vera (PV), particularly in...

Hello everyone, I am reaching out to the community for insights and personal ...

skakulec2

•9 months ago

2 Replies

Peg and Ear infection

Hi all! New to the forum, what a great community and resource. I was diagnosed with PV recently at age 53 and started a Pegasys a month ago, only 45 mcg...

Hi all! New to the forum, what a great community and resource. I was diagnose...

Fabfam5

•9 months ago

19 Replies

Looking for information

Hi. I wonder if anyone has used milk thistle supplements at all please. I have a non alcohol mild fatty liver, lucky me, alongside ET Jak2 positive. Thanks....

Hi. I wonder if anyone has used milk thistle supplements at all please. I have a...

Mcrg

•9 months ago

5 Replies

Improvement

Hello friends, I recently had myself a Stroke, the ambulance and emergency depth staff were exceptional at their jobs and I was only in the Edinburgh Royal...

Hello friends, I recently had myself a Stroke, the ambulance and emergency depth...

ArchieCatPurr

•9 months ago

9 Replies

ET and colon cancer!

Hi Some days ago this video popped in my youtube about link between ET and colon or lung cancer. It said something like around 16% of ET patiens could develop...

Hi Some days ago this video popped in my youtube about link between ET and colo...

Myers75

•9 months ago

6 Replies

High potassium anyone

Hi I have been taking hydroxy for 4yrs now. Recently my platelets started climbing up again. At the same time my regular doctor sent me for some tests and...

Hi I have been taking hydroxy for 4yrs now. Recently my platelets started clim...

Mrbeasley

•9 months ago

17 Replies

MF and Aspirin

Is anyone with MF taking only low dose aspirin, I am still watch and wait (50 year old) male. Have bad circulation and wondered if aspirin would help. No other...

Is anyone with MF taking only low dose aspirin, I am still watch and wait (50 ye...

flog

•9 months ago

3 Replies

First blood test after starting Peg 17/12/2023

Hi, Blood test from 28/12/2023 Platelets down to 427 (previous 580, 560, 504). Elevated Potassium 5.4 and ALT 96. I guess Peg has elevated ALT?? My...

Hi, Blood test from 28/12/2023 Platelets down to 427 (previous 580, 560, 504)....

Carol0925

•9 months ago

5 Replies

MPN app

Does anyone know if the MPN app has been launched and if so how does one get it? I did express an interest and submitted my details at the London forum in...

Does anyone know if the MPN app has been launched and if so how does one get it?...

JP1952

•9 months ago

5 Replies

Monday MRI

just wanted some good vibes from all my MPN warriors out there. Monday I have a MRI to see what is happening with my MS. Prayers Besremi has helped and I am...

just wanted some good vibes from all my MPN warriors out there. Monday I have a...

KLCTJC

•9 months ago

33 Replies

Persistant cough.

Hi I have been on Ruxilinitib for past two years after being on Hydroxycarbamide for 16 years. Diagnosed with Jac 2 PV in 2005. I had numerous side effects...

Hi I have been on Ruxilinitib for past two years after being on Hydroxycarbamide...

Mudmaker

•9 months ago

5 Replies

Unusual biopsie findings

I had a follow up yesterday and heard that the MDT meeting review my trephine biopsy. A new observation is that I had, beyond a granuloma relating to...

I had a follow up yesterday and heard that the MDT meeting review my trephine bi...

artydutch

•9 months ago

7 Replies

Thriving With an MPN | Tips and Support for Navigating Care

This is an excellent presentation provided by our friends from Patient Empowerment Network. Dr. Joseph Scandura discusses how to manage a MPN. His thoughts...

This is an excellent presentation provided by our friends from Patient Empowerme...

hunter5582

•9 months ago

3 Replies

Folic Acid Deficiency

Hello all, I have always suffered with anxiety and heart palpitations. Recently, they became worse and I went to the GP who sent me for a blood test. The...

Hello all, I have always suffered with anxiety and heart palpitations. Recentl...

Atheo82

•9 months ago

4 Replies

Besremi benefits?

hello community, I’ve previously asked a question about Besremi vs Jakafi ( for my husband with PV, currently on hydroxyurea) and really appreciative the...

hello community, I’ve previously asked a question about Besremi vs Jakafi ( f...

Laluna5683

•9 months ago

11 Replies

magnesium

any recommendations for for slight calf cramp ? ( Uk source )It is making it more difficult to sleep even though it’s very subtle Thanks

any recommendations for for slight calf cramp ? ( Uk source )It is making it m...

Mostew

•9 months ago

14 Replies

PV and AMD?

I've had PV since 2015 and have been on Jakafi for 18 months. I've recently been diagnosed with age-related macular degeneration and have been treated with...

I've had PV since 2015 and have been on Jakafi for 18 months. I've recently been...

sbs_patient

•9 months ago

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have you had trouble getting approved for stem cell transplant?

I have had a wild ride last year beginning with a sudden decline in weight from 240 lbs - 165 lbs. accompanying the weight loss has also been an...

I have had a wild ride last year beginning with a sudden decline in weigh...

Plasmapool

•9 months ago

7 Replies

Anti inflammatory tips

I know some of you are interested in improving inflammation. For those in the UK there is a BBC podcast you might find useful. I don't know how you can access...

I know some of you are interested in improving inflammation. For those in the U...

Scaredy_cat

•9 months ago

4 Replies

My Jak2 VAF update

I got my latest Jak2 update. The plot shows what is going on, a nice continuing reduction to 5%. My allele on IFN appears to be leveling off, suggesting a...

I got my latest Jak2 update. The plot shows what is going on, a nice continuing...

EPguy

•9 months ago

40 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2024

changing medication

gastroscopy

ET and temperature control

Molecular remission of MF which is being treated with PEG

Pneumonia vaccine

Re. High potassium

Jack2 symptoms but good blood results.

ET and dupixent

nephrectomy

spleen

Experiences and Research on Managing PV with Autophagy, Intermittent Fasting, and Vegan Diet

Peg and Ear infection

Looking for information

Improvement

ET and colon cancer!

High potassium anyone

MF and Aspirin

First blood test after starting Peg 17/12/2023

MPN app

Monday MRI

Persistant cough.

Unusual biopsie findings

Thriving With an MPN | Tips and Support for Navigating Care

Folic Acid Deficiency

Besremi benefits?

magnesium

PV and AMD?

have you had trouble getting approved for stem cell transplant?

Anti inflammatory tips

My Jak2 VAF update

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