Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for August 2023

Characteristics of gut microbiota in patients with polycythemia vera and the impact of different treatments

Another interesting article from our friends at MPN Hub. Some of us on the forum have concluded that the microbiome matters in managing a MPN....

Another interesting article from our friends at MPN Hub. Some of us on the foru...

hunter5582

•1 year ago

2 Replies

A real-world study of predictors of response to hydroxyurea and switch to ruxolitinib in patients with polycythemia vera

From our friends at MPN Hub. A very Interesting and easy to understand review of a recent article. Some excerpts are copied below. It is worth reading...

From our friends at MPN Hub. A very Interesting and easy to understand review ...

hunter5582

•1 year ago

3 Replies

ET/Hydroxycarbamide/ Low JAK2 levels - Another update - in case it is useful to anyone.

Thank you again to everyone for taking the time to reply and if you are still reading, thank you even more. It is so useful to have everyone's experience and...

Thank you again to everyone for taking the time to reply and if you are still re...

Cassandra61

•1 year ago

10 Replies

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Stopping Aspirin?

Hello Everybody, I am taking Hydroxy and baby aspirin daily for PV since 6 years and was told by my doctor to always keep taking the aspirin. A couple of...

Hello Everybody, I am taking Hydroxy and baby aspirin daily for PV since 6 year...

love0826

•1 year ago

19 Replies

Besremi Temperature Update

I recently posted about contacting Pharma Essentia due to a refrigerator malfunction and Besremi dose sitting in a higher than 46 degrees F (8 degrees C)...

I recently posted about contacting Pharma Essentia due to a refrigerator malfunc...

C_Anne_Orange

•1 year ago

5 Replies

MF, considering interferon treatment

Hello everyone I haven't posted for a while. All has been well, but my spleen is getting bigger now at 19.4cm. I am MF patient and 54. Working full time. I...

Hello everyone I haven't posted for a while. All has been well, but my spleen i...

Mrs_Average

•1 year ago

15 Replies

Continued thoughts on Hydroxy and urine

I’ve decided the occasional. Stronger smell must be food related . It’s so infrequent can’t be meds ….

I’ve decided the occasional. Stronger smell must be food related . It’s so infre...

Mostew

•1 year ago

11 Replies

Took some time but my platelets finally dropped on Peg

I'm a 51yo Calr type 1 and started Peg one year ago in July due to a cardiac episode...."MI". I started on 45mg quickly working to 180mg once a week. When I...

I'm a 51yo Calr type 1 and started Peg one year ago in July due to a cardiac epi...

mother2britton

•1 year ago

7 Replies

ET is considered a disability in US?

Hi all, recently I was applying a job in US. On the website they were asking if I have any disabilities (I am guessing for positive discrimination purposes),...

Hi all, recently I was applying a job in US. On the website they were asking if ...

AnonymousMike

•1 year ago

14 Replies

Low Red Blood Cell Count

Hello everyone, I went to my regular 4-month visit in July and my RBC count was below normal. Has anyone experienced this? I have ET, taking 500 mg daily....

Hello everyone, I went to my regular 4-month visit in July and my RBC count was ...

IrishSetterLover

•1 year ago

9 Replies

Peripheral neuropathy and Hydroxy

Hi. Anyone know if taking Hydroxy can lead to peripheral neuropathy? I am ET Jak neg Carl positive. Thanks 😊

Hi. Anyone know if taking Hydroxy can lead to peripheral neuropathy? I am ET Jak...

Lynne-G

•1 year ago

9 Replies

Besremi temperature problem

I was diagnosed with PV in August 2021 and was on Hydrea for about a year+, then switched to Besremi December 29, 2022, currently at 150 mcg. It's going well,...

I was diagnosed with PV in August 2021 and was on Hydrea for about a year+, then...

C_Anne_Orange

•1 year ago

7 Replies

Synthetic Hormones, Chemo & Radiotherapy

Hello, I am 60 years old, female,in the U.K., have had Primary Myelofibrosis for 20 years, treated with Aspirin & HU until recently, now switched to...

Hello, I am 60 years old, female,in the U.K., have had Primary Myelofibrosis for...

CraftySpider

•1 year ago

9 Replies

Balance

Hi all. I was just wondering if anyone has problems with dizziness and balance. I use to get it occasionally, now it is getting more frequent. I am aged 75,...

Hi all. I was just wondering if anyone has problems with dizziness and balance. ...

Hydrox

•1 year ago

29 Replies

claiming benefits

Morning all , just wanted to ask has anyone claimed the PIP ? Mobility component and daily living ?

Morning all , just wanted to ask has anyone claimed the PIP ? Mobility componen...

Birdlady2021

•1 year ago

10 Replies

HCT Jumped 3%.

I haven't had to have a phlebotomy for months and my HCT was hanging in at 45 or below. I switch from HU to Pegasus 2 1/2 months ago and all of a sudden my...

I haven't had to have a phlebotomy for months and my HCT was hanging in at 45 o...

russkatt

•1 year ago

11 Replies

Event-free survival in patients with polycythemia vera treated with Besremi versus best available treatment

»Normal life expectancy may be achievable in PV based on comparable overall survival in interferon-treated patients and a matched US population (p = 0.3),...

»Normal life expectancy may be achievable in PV based on comparable overall sur...

Manouche

•1 year ago

9 Replies

Dentist and antibiotics?

Hi - I have a question regarding dentist/hygienist and the need to take antibiotics afterwards (newly diagnosed with ET/JAK2 and still bringing down platelets...

Hi - I have a question regarding dentist/hygienist and the need to take antibiot...

Bouillabaisse

•1 year ago

27 Replies

how to obtain this app

hi all help, I didn’t download this app. Someone at an MPN forum kindly did it for me. I’ve suggested to a few people that this site but for other chronic...

hi all help, I didn’t download this app. Someone at an MPN forum kindly did it...

Wyebird

•1 year ago

2 Replies

High Immunoglobulin G levels

Hi everyone, I do hope everyone is keeping as well as they can be…. Just a quick question regarding the above, has anyone had high levels of this and if so...

Hi everyone, I do hope everyone is keeping as well as they can be…. Just a qui...

Grendall

•1 year ago

2 Replies

pink patches on skin

Hi I am 44 days post SCT and am at home recovering . I’m feeling quite well . I am 68 and have no other health issues . My blood counts are ok considering...

Hi I am 44 days post SCT and am at home recovering . I’m feeling quite well ...

Tortina

•1 year ago

10 Replies

New article for Jak2. Any thoughts on this???

https://scienceblog.cincinnatichildrens.org/research-reveals-potential-achilles-heel-in-treatment-resistant-mpn/

https://scienceblog.cincinnatichildrens.org/research-reveals-potential-achilles-...

Hello94

•1 year ago

8 Replies

What does this mean?

Hi. Me = male, ET, 80 year old. I am off to see the Haematologist on Tuesday so I asked the GP surgery for a copy of my latest Blood count - and I would...

Hi. Me = male, ET, 80 year old. I am off to see the Haematologist on Tuesday...

quanglewangle

•1 year ago

9 Replies

ET & HU

Happy to report my HU dosage was reduced again today. It was also reduced in April. Been on it now for two years so these reductions make me happy. Platelets...

Happy to report my HU dosage was reduced again today. It was also reduced in Apr...

Smoothie2020

•1 year ago

9 Replies

PV with Exon 12 Mutation & Besremi Treatment Experiences

Hello, I'm reaching out to share my experience and gather insights from those who've walked this path before. A brief background: I was diagnosed with PV,...

Hello, I'm reaching out to share my experience and gather insights from those...

skakulec2

•1 year ago

15 Replies

just some advice

hi lovely friends so I went for my bloods on Tuesday the doctor phoned me on Wednesday to say my platelets have gone hi so they have upped my dose 90mg pegsy...

hi lovely friends so I went for my bloods on Tuesday the doctor phoned me on Wed...

Staroftheday

•1 year ago

3 Replies

iron low reason ?

Hi all I saw my Gp again regarding the ferritin I’m on and it’s a low dose and I’m only little bit low in iron but now he wants to check if I’m bleeding...

Hi all I saw my Gp again regarding the ferritin I’m on and it’s a low dose and ...

Birdlady2021

•1 year ago

10 Replies

Ps tins for b bread

I used smaller tin .

Mostew

•1 year ago

Be the first to reply

Buckwheat soda bread

For those who may have tried and not succeeded with Fermented buckwheat recipe This is another good one . Makes nice toast. Read reviews I do prefer the...

For those who may have tried and not succeeded with Fermented buckwheat recip...

Mostew

•1 year ago

Be the first to reply

My urine smells very strong on HU?

Hi everyone, I’ve noticed that my urine is quite strong smelling since I’ve been on Hydrea. I’m on a low dose to start, 500mg every 2nd day with a daily...

Hi everyone, I’ve noticed that my urine is quite strong smelling since I’ve be...

Pachena

•1 year ago

16 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2023

Characteristics of gut microbiota in patients with polycythemia vera and the impact of different treatments

A real-world study of predictors of response to hydroxyurea and switch to ruxolitinib in patients with polycythemia vera

ET/Hydroxycarbamide/ Low JAK2 levels - Another update - in case it is useful to anyone.

Stopping Aspirin?

Besremi Temperature Update

MF, considering interferon treatment

Continued thoughts on Hydroxy and urine

Took some time but my platelets finally dropped on Peg

ET is considered a disability in US?

Low Red Blood Cell Count

Peripheral neuropathy and Hydroxy

Besremi temperature problem

Synthetic Hormones, Chemo & Radiotherapy

Balance

claiming benefits

HCT Jumped 3%.

Event-free survival in patients with polycythemia vera treated with Besremi versus best available treatment

Dentist and antibiotics?

how to obtain this app

High Immunoglobulin G levels

pink patches on skin

New article for Jak2. Any thoughts on this???

What does this mean?

ET & HU

PV with Exon 12 Mutation & Besremi Treatment Experiences

just some advice

iron low reason ?

Ps tins for b bread

Buckwheat soda bread

My urine smells very strong on HU?

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