Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for May 2023

Today’s Understanding of MPNs: Article Reviews in ASH Journal Blood

Our friends from MPN Research Foundation created a nice set of abstracts from Article reviews presented at ASH. Each of the abstracts has a link to the...

Our friends from MPN Research Foundation created a nice set of abstracts from Ar...

hunter5582

•2 years ago

4 Replies

Rux progress

I've been on Rux for almost two months at a relatively low dose of 10 BID (20 total /day). Got the CBC yesterday. As seen in these plots it's starting to...

I've been on Rux for almost two months at a relatively low dose of 10 BID (20 to...

EPguy

•2 years ago

9 Replies

really cold

hi everyone I just had my first Pegasus shot and feel very cold like when you have a iv and really tired only been a hour is that normal but cold feeling...

hi everyone I just had my first Pegasus shot and feel very cold like when you ha...

Nc3500

•2 years ago

8 Replies

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MPN Voice Patients’ Forum – Leeds, Rotherham, Sheffield teams combined

Tuesday 7 November, 1 - 5 pm (arrival/registration from 1pm with complimentary buffet lunch) Venue Thackray Museum of Medicine 141 Beckett Street...

Tuesday 7 November, 1 - 5 pm (arrival/registration from 1pm with complimentary b...

Mazcd

Partner•2 years ago

Be the first to reply

MPN Voice Patients’ Forum – Gloucester & S Wales teams combined

Friday 21 July, 4 - 8 pm (arrival/registration from 4 pm with complimentary light buffet) Venue Future Inn Bristol Bond Street South Bristol BS1 3EN...

Friday 21 July, 4 - 8 pm (arrival/registration from 4 pm with complimentary ligh...

Mazcd

Partner•2 years ago

3 Replies

MPN Voice Patients’ Forum – Nottingham & Birmingham teams combined

Monday 17 July 2023, 1 – 5 pm (arrival/registration from 1 pm with complimentary buffet lunch) Venue Mercure Nottingham Sherwood Hotel 296 Mansfield...

Monday 17 July 2023, 1 – 5 pm (arrival/registration from 1 pm with complimentary...

Mazcd

Partner•2 years ago

1 Reply

new mutations

just had my second BMB a couple of months ago. Had been taking aspirin and monthly phlebotomy until 3 months ago when started hydroxyurea. My BMB now showed a...

just had my second BMB a couple of months ago. Had been taking aspirin and mont...

Teachme85

•2 years ago

11 Replies

Video of the MPN Voice patients’ virtual forum 25 May 2023, Genetics and MPNs

The video of the MPN Voice patients’ ‘virtual’ forum, held on Thu 25 May 23, is now available to view. This online forum focussed on Genetics and MPNs....

The video of the MPN Voice patients’ ‘virtual’ forum, held on Thu 25 May 23, is ...

Mazcd

Partner•2 years ago

Be the first to reply

Besremi Supply Security Issues??

Sorry, guys - this could very much just be me being too paranoid - but I would like to ask if anybody has experienced or heard of the supply shortage issue...

Sorry, guys - this could very much just be me being too paranoid - but I would l...

Joey1025

•2 years ago

7 Replies

Besremi and vaccines

Hi, I need to get a Tdap (tetanus, diphtheria, and whooping cough) vaccine as my daughter just had a baby. To date, I've had no issues with many COVID...

Hi, I need to get a Tdap (tetanus, diphtheria, and whooping cough) vaccine as...

Elizka

•2 years ago

15 Replies

painful elbows

I have now been taking Hydroxy for 3 months having been recently diagnosed with ET in February and from week 2 of taking, both my elbows are extremely sore. My...

I have now been taking Hydroxy for 3 months having been recently diagnosed with ...

Fairydust1111

•2 years ago

19 Replies

High Platelets and N-Acetylcysteine trial

Greetings all, I had my 6 month visit with my MPN specialist and the blood work prior to the visit. Re: High Platelets My platelets have been rising...

Greetings all, I had my 6 month visit with my MPN specialist and the blood work...

mbr8076

•2 years ago

3 Replies

Insomnia Help

I’ve been struggling with insomnia pretty bad lately & it’s been hard even taking a nap. I’ve been on venesection only & have normal counts, but still...

I’ve been struggling with insomnia pretty bad lately & it’s been hard even takin...

Nrl303

•2 years ago

22 Replies

air travel safety with an MPN

Could anyone weigh in on the safety of traveling by air, or in the mountains, for people with MPNs at risk of clotting? (I have PV, temporarily untreated...

Could anyone weigh in on the safety of traveling by air, or in the mountains, fo...

Ovidess

•2 years ago

9 Replies

Response to sunscreen question.

I am very grateful to you all for your responses in relation to my question about sunscreens , medication and hair loss, we are lucky on this site to have such...

I am very grateful to you all for your responses in relation to my question abou...

Janis12

•2 years ago

13 Replies

Dry mouth and nose

Has anyone on Jakavi experienced a dry mouth and nose. I can drink water to help with a dry mouth but what do I use for my nose. It is very dry and sore....

Has anyone on Jakavi experienced a dry mouth and nose. I can drink water to help...

wendycu

•2 years ago

23 Replies

Anyone with ET tried ginseng, ginko bilboa, or pomegranates to lower PC?

My son (19y/o) has ET, is JAK2+, and is home from college for the summer. He is currently on a daily aspirin, but I am concerned about his PC continuing to...

My son (19y/o) has ET, is JAK2+, and is home from college for the summer. He is ...

trainerliz

•2 years ago

4 Replies

Potential adverse effects of long-term venesection used to treat PV.

I got curious after watching the Richard Silver presentation that was recently posted on the forum. Dr. Silver quoted some potential adverse effects from...

I got curious after watching the Richard Silver presentation that was recently p...

hunter5582

•2 years ago

45 Replies

Ropeginterferon Alfa-2b listed as Preferred Treatment in Polycythemia Vera

The National Comprehensive Cancer Network Clinical Practice Guidelines in Oncology have been revised to include ropeginterferon alfa-2b-njft as a preferred...

The National Comprehensive Cancer Network Clinical Practice Guidelines in Oncolo...

Manouche

•2 years ago

9 Replies

Sun screen

Hi Folks, today I had one of my many cycling rides which always includes a stop at a tea room where I know there will be other cyclists so it is also a good...

Hi Folks, today I had one of my many cycling rides which always includes a stop ...

Janis12

•2 years ago

43 Replies

Besremi and eye check up

I had a detailed eye exam yesterday. My eye site has gone from 20/20 to 20/25, but reading glasses prescription is fine. Could be age or...

I had a detailed eye exam yesterday. My eye site has gone from 20/20 to 20/25,...

Elizka

•2 years ago

5 Replies

possible Sjögren Syndrome

Hi All I am in a quandary, so need some input. I have been on Pegasys for 11 months. I am taking 67 mcg weekly. Six months ago I started having symptoms of...

Hi All I am in a quandary, so need some input. I have been on Pegasys for 11 mo...

Wewo01

•2 years ago

28 Replies

Does Hydroxyurea affect kidneys?

I am 79 and diagnosed a year ago with ET JAK2. Previous to diagnosis my platelets were slowly rising and my kidney function was slowly decreasing. I...

I am 79 and diagnosed a year ago with ET JAK2. Previous to diagnosis my plat...

Mirror368

•2 years ago

2 Replies

Having Rotator cuff repair tomorrow, and Moh's surgery next week.

Hi, Well, I made through the past week without aspirin and my anti-inflammatories, which I sorely missed, so that tomorrow they can fix my rotator cuff. Then...

Hi, Well, I made through the past week without aspirin and my anti-inflammatori...

PhysAssist

•2 years ago

18 Replies

has anyone gotten a rash on their feet from hydroxyurea or just having thrombocytosis

I am reaching out to you wonderful people again. I have a red blotchy rash on my feet and have had this for a year. Someone called it micro vascular but I am...

I am reaching out to you wonderful people again. I have a red blotchy rash on m...

kitttycat

•2 years ago

13 Replies

Tips?

I may be diagnosed with PV, but want to make sure I get into see an MPN specialist, but the best one in my town doesn’t have any availability till almost two...

I may be diagnosed with PV, but want to make sure I get into see an MPN speciali...

NLBlue

•2 years ago

6 Replies

13 years on Hydroxyurea

Has anyone else been on Hydroxyurea this long? Do you have any side effects?

Doxy46

•2 years ago

15 Replies

Two Questions

Has anyone else here suffered weight loss as a symptom of their PV and have been struggling to gain it back? Also, I have been diagnosed in my 20’s and can’t...

Has anyone else here suffered weight loss as a symptom of their PV and have been...

Hereforalongtime

•2 years ago

8 Replies

pegasys

good morning everyone I finally got my pegasys approved shots I will be in today and may wait towards the weekend to be on a better schedule scared and...

good morning everyone I finally got my pegasys approved shots I will be in toda...

Nc3500

•2 years ago

18 Replies

ET , Jak2 positive.

Having being diagnosed with ET last August, I have been on aspirin only until my haematologist said that with platelets rising to 540 I should start...

Having being diagnosed with ET last August, I have been on aspirin only until my...

Rebus12

•2 years ago

25 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2023

Today’s Understanding of MPNs: Article Reviews in ASH Journal Blood

Rux progress

really cold

MPN Voice Patients’ Forum – Leeds, Rotherham, Sheffield teams combined

MPN Voice Patients’ Forum – Gloucester & S Wales teams combined

MPN Voice Patients’ Forum – Nottingham & Birmingham teams combined

new mutations

Video of the MPN Voice patients’ virtual forum 25 May 2023, Genetics and MPNs

Besremi Supply Security Issues??

Besremi and vaccines

painful elbows

High Platelets and N-Acetylcysteine trial

Insomnia Help

air travel safety with an MPN

Response to sunscreen question.

Dry mouth and nose

Anyone with ET tried ginseng, ginko bilboa, or pomegranates to lower PC?

Potential adverse effects of long-term venesection used to treat PV.

Ropeginterferon Alfa-2b listed as Preferred Treatment in Polycythemia Vera

Sun screen

Besremi and eye check up

possible Sjögren Syndrome

Does Hydroxyurea affect kidneys?

Having Rotator cuff repair tomorrow, and Moh's surgery next week.

has anyone gotten a rash on their feet from hydroxyurea or just having thrombocytosis

Tips?

13 years on Hydroxyurea

Two Questions

pegasys

ET , Jak2 positive.

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