Posts - MPN Voice | HealthUnlocked

MPN Voice

11,252 members•15,728 posts

All posts for January 2022

Golden Paste

Do any of you take this? Golden paste is antimicrobial and anti-inflammatory, making it great for helping your body to heal as well as reduce the symptoms of...

Do any of you take this? Golden paste is antimicrobial and anti-inflammatory, ma...

IrishHiker

•3 years ago

8 Replies

Sleep

Hi Great to find this community, Just started Hydroxycarbamide a few months ago has anyone found any better time to take it. I suffer with very poor. sleep...

Hi Great to find this community, Just started Hydroxycarbamide a few months ago ...

Pen7

•3 years ago

16 Replies

BMB- 16 year old daughter JAK2+ ET

Hello, My 16 year old daughter was diagnosed with JAK2 + ET in 2020 and subsequently had a BMB in November 2020, confirming this. I have posed this question...

Hello, My 16 year old daughter was diagnosed with JAK2 + ET in 2020 and subseque...

Piperpeeps

•3 years ago

10 Replies

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Dr Silver, interferon and possible combos

See reference to NAC and statins near the bottom https://journals.lww.com/hemasphere/fulltext/2021/12000/new_perspectives_of_interferon_alpha2_and.7.aspx

See reference to NAC and statins near the bottom https://journals.lww.com/hemasp...

Paul123456

•3 years ago

22 Replies

Resveratrol with and vs Rux, bombshell claim

Member Beup posted in today's feed about food vs Jak2. In checking it out I came across this one. It's regarding the supplement Resveratrol and is from from...

Member Beup posted in today's feed about food vs Jak2. In checking it out I cam...

EPguy

•3 years ago

15 Replies

One year later - need help everyone

It has been 1 year since I joined this wonderful forum. This is a great place. Thank you all. I need help deciding what to do moving forward. I am a 30...

It has been 1 year since I joined this wonderful forum. This is a great place. T...

cmc_ufl

•3 years ago

26 Replies

Myelofibrosis symptoms?

Info on Myelofibrosis

BigStone

•3 years ago

1 Reply

Age with ET

Hi I would love to know if there is anybody with ET on this health unlocked group who is over the age of 84. I really worry about taking this hydroxy every day...

Hi I would love to know if there is anybody with ET on this health unlocked grou...

Mardihel

•3 years ago

8 Replies

Blood Test vs. Bone Marrow Biopsy

Hi! When I was diagnosed in November 2020, I was given a blood test to determine that I have a JAK2 mutation and Polycythemia Vera. I even went to an MPN...

Hi! When I was diagnosed in November 2020, I was given a blood test to determine...

Sheena2020

•3 years ago

29 Replies

Second opinion

Although my bloods were consistently up, and going up, my first haemotologist said he was very surprised at my BMB result of ET. He also told me he is an...

Although my bloods were consistently up, and going up, my first haemotologist sa...

Woodlandgarden

•3 years ago

14 Replies

Travelling to Tenerife in March

Has anyone managed to get travel insurance for Spain who has Myleofibrosis?

dancingelephant

•3 years ago

10 Replies

Patience is a virtue

« Should you be fortunate enough to enjoy a long life, there is a chance you will develop clonal hematopoiesis (CH), even if you never know about it. Over the...

« Should you be fortunate enough to enjoy a long life, there is a chance you wil...

Manouche

•3 years ago

2 Replies

Besremi was approved for me by the insurance provider

I am quite excited that CVS/Caremark had approved of Besremi prescription after the appeals process which the hematologist had submitted - as the original...

I am quite excited that CVS/Caremark had approved of Besremi prescription after ...

Pat032018

•3 years ago

11 Replies

Vulnerability to Covid and other viruses

How much risk to catching viruses etc does being on Hydroxycarbamide cause? How does it impact on daily living? Thank you

How much risk to catching viruses etc does being on Hydroxycarbamide cause? How ...

Peachjoy

•3 years ago

16 Replies

Collagen supplements

Does anyone take collagen products ie supplements with hydroxy and aspirin is it safe to do so?

Does anyone take collagen products ie supplements with hydroxy and aspirin is it...

tina6

•3 years ago

9 Replies

Multiple covid vaccine doses and immune imprinting

I have been reading about immune imprinting (also known as original antigenic sin... what a term!) and antibody dependent enhancement in relation to covid...

I have been reading about immune imprinting (also known as original antigenic si...

Aldebaran25

•3 years ago

4 Replies

Recommendation for Pegasys Users

Hi Everyone, On this snowy morning in New England, with a recent increase in dose to 135 mcg, I was trying to understand side effects of Pegasys. As I read...

Hi Everyone, On this snowy morning in New England, with a recent increase in dos...

gvibes

•3 years ago

8 Replies

Translating Medical notes to Spanish - recommendations?

Hi friends, hope everyone is keeping well! I’m travelling to Spain this month and was thinking of having my medical notes translated to Spanish to bring with...

Hi friends, hope everyone is keeping well! I’m travelling to Spain this month an...

IrishSarah

•3 years ago

7 Replies

Side effects

What side effects have people suffered from Hydroxycarbadmide. I started mine today

What side effects have people suffered from Hydroxycarbadmide. I started mine to...

Mandz12

•3 years ago

44 Replies

Start Besremi Tomorrow

Tomorrow is the day I start Besremi. I was dx with PV 4/15 (tax day in US) in 2016. Since then I've only had phlebotomies and taken aspirin. I've had no major...

Tomorrow is the day I start Besremi. I was dx with PV 4/15 (tax day in US) in 20...

Elizka

•3 years ago

5 Replies

Outcomes of JAK2 V617F-positive polycythemia vera and ET according to the JAK2 V617F allele burden

« JAK2 V617F allele burdens were positively correlated with white blood cell counts, hemoglobin values, lactate dehydrogenase levels, and platelet counts. The...

« JAK2 V617F allele burdens were positively correlated with white blood cell cou...

Manouche

•3 years ago

17 Replies

Hydrea vs weight

For curiosity I looked into weight gain via HU. This very old and small study for sickle cell looked into it. There should be larger studies I would think...

For curiosity I looked into weight gain via HU. This very old and small study f...

EPguy

•3 years ago

5 Replies

Mesa and Besremi

New article featuring Dr Mesa on PV and Besremi: https://www.onclive.com/view/what-to-know-about-polycythemia-vera-and-treatment-options

New article featuring Dr Mesa on PV and Besremi: https://www.onclive.com/view/w...

Elizka

•3 years ago

3 Replies

Connection between Hair Loss and Covid Vaccine?

Hi All, I have had ET for 16 years and on HU for 14. I experienced significant hair loss at the beginning but it let up after the first year. I have been on...

Hi All, I have had ET for 16 years and on HU for 14. I experienced significant h...

Ladygolf

•3 years ago

9 Replies

Comments about Ports

Just wanted to thank everyone for your comments, suggestions and additional information in response to my question about getting a port. I am not going get a...

Just wanted to thank everyone for your comments, suggestions and additional info...

Bluetoday1

•3 years ago

Be the first to reply

When should I have fourth Covid vaccination?

I see from some of the posts that people are having fourth dose around three months after their third. The letter from my haematology dept says I will be...

I see from some of the posts that people are having fourth dose around three mo...

Wesleygrange2a

•3 years ago

8 Replies

Covid positive journey so far…..

I have tested positive for Covid, after sometime of feeling like I was on borrowed time with 2 children at secondary school, a husband who is self employed and...

I have tested positive for Covid, after sometime of feeling like I was on borrow...

Nickyanne

•3 years ago

22 Replies

Switch from HU to Pegasys - update!

I received an unscheduled call from my haematologist this morning to say that I’ve responded very well to PEG and that, consequently, I can now lower my weekly...

I received an unscheduled call from my haematologist this morning to say that I’...

FG251

•3 years ago

18 Replies

4th dose timing and Travel

I should be able to get my 4th dose from beginning of February. However, I am hoping to travel abroad including USA in April/May. Would it be better to boost...

I should be able to get my 4th dose from beginning of February. However, I am ho...

Runner999

•3 years ago

Be the first to reply

Polycythaemia Vera.

I live in Plymouth UK, and have just been diagnosed with Polycycthaemia Vera , and am waiting to hear from my hospital my treatment which I believe will be...

I live in Plymouth UK, and have just been diagnosed with Polycycthaemia Vera , ...

plym1uk

•3 years ago

22 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2022

Golden Paste

Sleep

BMB- 16 year old daughter JAK2+ ET

Dr Silver, interferon and possible combos

Resveratrol with and vs Rux, bombshell claim

One year later - need help everyone

Myelofibrosis symptoms?

Age with ET

Blood Test vs. Bone Marrow Biopsy

Second opinion

Travelling to Tenerife in March

Patience is a virtue

Besremi was approved for me by the insurance provider

Vulnerability to Covid and other viruses

Collagen supplements

Multiple covid vaccine doses and immune imprinting

Recommendation for Pegasys Users

Translating Medical notes to Spanish - recommendations?

Side effects

Start Besremi Tomorrow

Outcomes of JAK2 V617F-positive polycythemia vera and ET according to the JAK2 V617F allele burden

Hydrea vs weight

Mesa and Besremi

Connection between Hair Loss and Covid Vaccine?

Comments about Ports

When should I have fourth Covid vaccination?

Covid positive journey so far…..

Switch from HU to Pegasys - update!

4th dose timing and Travel

Polycythaemia Vera.

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