Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for July 2021

Targeted Therapies for Polycythemia Vera

« Andrew Kuykendall, MD: You bring up a great point there as far as the durability goes, because I have run into a few conversations with folks where there is...

« Andrew Kuykendall, MD: You bring up a great point there as far as the durabil...

Manouche

•3 years ago

6 Replies

Itching after eating. Anyone else ?

Hi all Recently diagnosed PV Jak2 positive. Had venesection but symptoms are worse. I have tingling and aching in arms fingers and feet toes. Also extreme...

Hi all Recently diagnosed PV Jak2 positive. Had venesection but symptoms are wo...

SeanMc

•3 years ago

18 Replies

Pain and fatigue

Hi all. I am looking for some advice please. Has anyone out there had to take early retirement due to mpn. I am 59 and have pv jak 2 positive. I am really...

Hi all. I am looking for some advice please. Has anyone out there had to take ea...

poly2

•3 years ago

25 Replies

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Taking interferon in hot weather

Quick question, I took interferon on Saturday night and have been suffering since - very achy and then cold shivers at night... (Although periods of feeling...

Quick question, I took interferon on Saturday night and have been suffering sinc...

hansyhand

•3 years ago

15 Replies

Heat or what ?

Hi, hope you are all ok. I have PV, but is anyone else feeling really unwell with this heat. Although I am not feeling really over heated, but I am feeling...

Hi, hope you are all ok. I have PV, but is anyone else feeling really unwell wi...

Yvette49

•3 years ago

44 Replies

Should I skip aspirin after a covid vaccine?

Hi can I still take my low-dose aspirin the day I got the covid vaccine? Because they gave a leaflet that says try to avoid nsaids like ibuprofen and aspirin...

Hi can I still take my low-dose aspirin the day I got the covid vaccine? Because...

livelovelaugh1992

•3 years ago

18 Replies

Updated Guidance for Clinically Vulnerable

The government have updated their guidance:...

Jenny_F

•3 years ago

14 Replies

Just joined

Hello to all of you. I've just found your forum, and am hoping to find as much out as I can. I'm 48 and work for the ambulance service. However, due to my...

Hello to all of you. I've just found your forum, and am hoping to find as much o...

mystic_shrimp

•3 years ago

14 Replies

Does PV or taking HU cause gout

Hello and thank you to everyone who answered my question about Hu and sun exposure, will have a few more questions when I visit the heme this week. I am 71 PV...

Hello and thank you to everyone who answered my question about Hu and sun exposu...

Meatloaf9

•3 years ago

19 Replies

ALTERNATIVE TO RUXONLITINIB

Good afternoon After five years of excellent treatment on Ruxonlitinib to treat myelofibrosis and recent surgery to remove an aggressive SCC from my forehead...

Good afternoon After five years of excellent treatment on Ruxonlitinib to trea...

kevinbros

•3 years ago

10 Replies

Husband Update

It seems like so long since I’ve updated, but it’s been only a few months. Husband is doing… ok. We’ve just received news that they've found a donor for his...

It seems like so long since I’ve updated, but it’s been only a few months. Husb...

TM76

•3 years ago

13 Replies

20 Years Old And Scared

Hey everyone, I have had some irregularities in my two most recent blood tests, and am now starting to get extremely worried. Last November during a routine...

Hey everyone, I have had some irregularities in my two most recent blood tests, ...

Lc06091

•3 years ago

23 Replies

Unremitting Intestinal Issues

While I don’t participate here often, I always enjoy reading about your experiences with MPNs. I’m 3 years into my PV diagnosis…73 yrs old. I’ve heard that...

While I don’t participate here often, I always enjoy reading about your experien...

BluePeony

•3 years ago

18 Replies

New member and looking for specialist.

Hi everyone, I am a 65 year old female with PV. I’m looking for an MPN specialist in Portland, Oregon or the surrounding area. I have looked at the MPN...

Hi everyone, I am a 65 year old female with PV. I’m looking for an MPN speciali...

Krag

•3 years ago

11 Replies

Update 5.7

Now at 8 weeks out from initiating treatment for PV with Pegasys, things continue to go well. I am still not having any adverse effects at 45mcg/1x-week....

Now at 8 weeks out from initiating treatment for PV with Pegasys, things continu...

hunter5582

•3 years ago

58 Replies

Is it safe to take vaccine? I am an MPN patient

Is it safe for MPN patients to take vaccine? Does it work in pur body?

Aby1990

•3 years ago

55 Replies

HU WEIGHT

Hi does everyone on HU gain weight.????

Hidden

•3 years ago

26 Replies

Study participation opportunity

I have been offered the chance to participate in a phase 2 study to assess the safety, efficacy, and pharmacodynamics of IMG-7289( bomedemsat) for patients...

I have been offered the chance to participate in a phase 2 study to assess the s...

givingITMybest

•3 years ago

4 Replies

Anyone else been called for a Pneumonia Vaccine?

I'm having mine this afternoon - I was stunned when I got the call from my GP's Surgery yesterday, as I don't fall into the 'normal' pneumonia vaccine...

I'm having mine this afternoon - I was stunned when I got the call from my GP's ...

Kari1961

•3 years ago

27 Replies

Covid-19 Antibody Test

Hi All, I had my second Moderna shot 5 months ago. I have PV/ET. I started Hydrea 2 weeks after the second shot. I just had an antibody test. The result was...

Hi All, I had my second Moderna shot 5 months ago. I have PV/ET. I started Hydre...

Dan73

•3 years ago

5 Replies

Further update from Cancer52

Heard today that the Mail on Sunday is running my story on having PV. I am hoping this time it will include my comment about MPN Voice.

Heard today that the Mail on Sunday is running my story on having PV. I am hopin...

jillydabrat

•3 years ago

10 Replies

The eyes have it?

Afternoon all, Has anyone with an MPN every had VMT of the eyes, I have just been told after a second scan that my blurred vision is what the problem is, and...

Afternoon all, Has anyone with an MPN every had VMT of the eyes, I have just bee...

Superwoman

•3 years ago

12 Replies

What happened with that was posted today??

Covid19 alternative treatments.

light

•3 years ago

75 Replies

How to get a 2nd opinion from a MPN specialist? - UK

Good morning all, I would like to arrange an appointment with a MPN specialist to get a second opinion on my treatment plan to find out what changes can be...

Good morning all, I would like to arrange an appointment with a MPN specialist t...

Nay123

•3 years ago

33 Replies

Raised platelets after jabs

Hi , I have a friend who also has ET ,had both jabs , she noticed platelet levels had risen after both , wondering if anyone else had noticed the same Thanks...

Hi , I have a friend who also has ET ,had both jabs , she noticed platelet level...

Dbh1962

•3 years ago

21 Replies

Antibody test results positive-Pfizer Vaccine

Hello, Due to my concern about the possibility of not developing antibodies and surging Delta variant cases in my state, my physician ordered this test:...

Hello, Due to my concern about the possibility of not developing antibodies and ...

Lena70

•3 years ago

9 Replies

ET and Renal Atrophy?

Hi all! I have recently been diagnosed with ET (one week ago). I went Friday for my blood tests and an ultrasound of my spleen. She did an ultrasound of the...

Hi all! I have recently been diagnosed with ET (one week ago). I went Friday for...

Munderdown7264

•3 years ago

5 Replies

New Dx of splenic cyst. I am ET, JAK2+ on HU and 81mg aspirin 2x daily.

I fired my previous dr. Found new one at Ochsner in New Orleans. Seems knowledgeable. He was nonplussed that previous doc did not order spleen ultrasound or an...

I fired my previous dr. Found new one at Ochsner in New Orleans. Seems knowledge...

Wewo01

•3 years ago

16 Replies

Newly diagnosed with MF

Hi guys , got my appointment through yesterday for the 12th of August does anyone think that this is to long to wait ? I am also due to get a scan on my spleen...

Hi guys , got my appointment through yesterday for the 12th of August does anyon...

indy22

•3 years ago

8 Replies

Amazing what you discover on the NHS app

My hubby and I have been very worried about how bad my mobility has got in the last year. There has been a marked decline but the pain in my spine and joints...

My hubby and I have been very worried about how bad my mobility has got in the l...

jillydabrat

•3 years ago

30 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2021

Targeted Therapies for Polycythemia Vera

Itching after eating. Anyone else ?

Pain and fatigue

Taking interferon in hot weather

Heat or what ?

Should I skip aspirin after a covid vaccine?

Updated Guidance for Clinically Vulnerable

Just joined

Does PV or taking HU cause gout

ALTERNATIVE TO RUXONLITINIB

Husband Update

20 Years Old And Scared

Unremitting Intestinal Issues

New member and looking for specialist.

Update 5.7

Is it safe to take vaccine? I am an MPN patient

HU WEIGHT

Study participation opportunity

Anyone else been called for a Pneumonia Vaccine?

Covid-19 Antibody Test

Further update from Cancer52

The eyes have it?

What happened with that was posted today??

How to get a 2nd opinion from a MPN specialist? - UK

Raised platelets after jabs

Antibody test results positive-Pfizer Vaccine

ET and Renal Atrophy?

New Dx of splenic cyst. I am ET, JAK2+ on HU and 81mg aspirin 2x daily.

Newly diagnosed with MF

Amazing what you discover on the NHS app

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