Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for March 2021

MPN Voice Face Masks

MPN Voice is delighted to advertise that our new MPN Voice face masks are now available to buy. Hopefully shielding will soon be over and we will feel more...

MPN Voice is delighted to advertise that our new MPN Voice face masks are now av...

Mazcd

Partner•3 years ago

10 Replies

Jak2 positive but I'm healthy

Hello, I've got my test results last week and it says Jak2 Mutation tested, may platelets from 700+ goes to 1300+ last time but I'm on my period then I don't...

Hello, I've got my test results last week and it says Jak2 Mutation tested, may ...

livelovelaugh1992

•3 years ago

14 Replies

Finally start treatment

Good morning all. After being diagnosed with E T almost a year to the day, I will start treatment. Feel apprehensive..Should have asked more questions..but on...

Good morning all. After being diagnosed with E T almost a year to the day, I wil...

Cokopops

•3 years ago

12 Replies

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Protagonist Therapeutics to Initiate Global Phase 3 Study for Rusfertide in Polycythemia Vera Following Interactions with FDA and EMA

« Protagonist Therapeutics (Nasdaq: PTGX) announced today that the Division of Nonmalignant Hematology at the U.S. Food and Drug Administration ("FDA") has...

« Protagonist Therapeutics (Nasdaq: PTGX) announced today that the Division of N...

Manouche

•3 years ago

2 Replies

Future clinical trial with good evidence

https://www.news-medical.net/amp/news/20210322/Study-finds-two-drugs-capable-of-slowing-bone-marrow-cancer-progression.aspx

https://www.news-medical.net/amp/news/20210322/Study-finds-two-drugs-capable-of-...

Aneliv9

•3 years ago

42 Replies

Allergies

Hello friends l struggle with allergies, spring has begun and lm unsure what meds to use, last year l was ill and spent nearly all of the summer indoors. This...

Hello friends l struggle with allergies, spring has begun and lm unsure what med...

Hidden

•3 years ago

21 Replies

Fatigue and exercise

Good morning, I am awaiting results at the moment but I am so tired and I got bloods taken on the 3rd March and my veins in my arm are all sore from this. My...

Good morning, I am awaiting results at the moment but I am so tired and I got b...

De12

•3 years ago

17 Replies

Platelets and Family History - Familial (Malignant) versus Hereditary (Benign) Thrombocytosis

Just thought I would post something interesting I learned in a recent discussion with my MPN specialist regarding the connection between families and...

Just thought I would post something interesting I learned in a recent discussion...

cmc_ufl

•3 years ago

13 Replies

INR spikes with warfarin

My INR has been stable for many months, with the dosage unchanged during that period. However, a couple of weeks ago it shot up to 3.9, then went back down to...

My INR has been stable for many months, with the dosage unchanged during that pe...

MarkD6701

•3 years ago

5 Replies

FDA Rejects Ropeginterferon alfa-2b for Polycythemia Vera

« The drug development process is not always easy or quick. It consists of drug discovery, preclinical and clinical research, and FDA approval. However,...

« The drug development process is not always easy or quick. It consists of drug ...

Manouche

•3 years ago

17 Replies

Third painting for MacMillan Nurses

All that know me know that I want to raise money for MacMillan Nurses who were there when I couldn’t be when my beautiful mum passed away. I have finished my...

All that know me know that I want to raise money for MacMillan Nurses who were t...

jillydabrat

•3 years ago

13 Replies

Starting Besremi

Hi, As Pegasys, Ruxolitnib and Hydroxy are no longer appropriate for my PV I have just started to transition to Besremi. The treatment consists of an...

Hi, As Pegasys, Ruxolitnib and Hydroxy are no longer appropriate for my PV I hav...

JohnSC

•3 years ago

10 Replies

Help to lose weight with under active thyroid

Hi all, I was diagnosed with under active thyroid about 8 months ago, and taking Levothyroxine, I have been trying to lose about a stone in weight but am...

Hi all, I was diagnosed with under active thyroid about 8 months ago, and taking...

Yvette49

•3 years ago

10 Replies

Dupuytren’s contracture and PV

Have just been diagnosed with Dupreytrens contracture (hand tendon complaint) and doctors mentioned a possible link to PV. Has anyone else got this lucky...

Have just been diagnosed with Dupreytrens contracture (hand tendon complaint) an...

Innessant

•3 years ago

9 Replies

Sleep Apnea and mpns

Hello, all. I am post Et Mf and I was diagnosed with obstructive sleep apnea a couple of months ago. My hematologist had sent me to a pulmonologist to address...

Hello, all. I am post Et Mf and I was diagnosed with obstructive sleep apnea a c...

Cja1956

•3 years ago

25 Replies

Lack of energy

Hi All I have MF with low hb 90 and platelets 30 at moment I am tired all the time. Age 79 and been treated since 2007 on Ruxolitinib 5mg twice a day and...

Hi All I have MF with low hb 90 and platelets 30 at moment I am tired all the ti...

WeeHarry

•3 years ago

5 Replies

Dizziness when starting HU

Hello MPN community. I am 83 years young and have PV being diagnosed about a year ago.I am Jak2+ and just recently started HU. My MPN specialist precribed...

Hello MPN community. I am 83 years young and have PV being diagnosed about a yea...

Ridenez

•3 years ago

3 Replies

High red blood cells

Hi every one hope your all fine I've been feeling ill for a while then found out my red blood cells are to high had 2 venesections so far still feel no better...

Hi every one hope your all fine I've been feeling ill for a while then found out...

Tobywhitedod

•3 years ago

17 Replies

Thrombosis trigger to AstraZenica vaccination discovered - not yet peer reviewed

It has been reported that researchers in Germany (and concurrently in Norway) have identified a potential trigger for unusual thrombosis after the Astra Zenica...

It has been reported that researchers in Germany (and concurrently in Norway) ha...

MPNBlog

•3 years ago

12 Replies

Early symptoms have vanished

I am almost 2 months into my treatment for ET on Hydra. Initially 500/day for the first 2 weeks, and since then it's been 1000mg 4 days and 500 mg 3 days of...

I am almost 2 months into my treatment for ET on Hydra. Initially 500/day for th...

Hidden

•3 years ago

3 Replies

Does anyone know how I can get hold of the MPN Voice leaflet about MPNs?

I was given an MPN Voice leaflet when I was diagnosed that explained what MPNs are and included definitions of lots of terms such as ET, PV etc. I've found it...

I was given an MPN Voice leaflet when I was diagnosed that explained what MPNs a...

Toblerone18

•3 years ago

2 Replies

COVID vaccines and risk of blood clots

After a careful review of the data, UK and International regulatory agencies confirmed yesterday (18.3.21) that the risk of blood clots after COVID vaccination...

After a careful review of the data, UK and International regulatory agencies con...

Mazcd

Partner•3 years ago

15 Replies

ET and awaiting results

Hello to everyone, I am new too the forum and this is my first post. I have been reading a lot of posts and you are all very knowledgeable. You might kindly...

Hello to everyone, I am new too the forum and this is my first post. I have be...

De12

•3 years ago

11 Replies

Angioplasty

Hope everyone is well and staying safe. It's a while since I have posted on here. Still on HU and angralide and recently my platelets had got to 340. Last few...

Hope everyone is well and staying safe. It's a while since I have posted on here...

heathermc

•3 years ago

10 Replies

Thought this update on ET was interesting

https://www.youtube.com/watch?app=desktop&v=u2QRsbgJF_M&feature=youtube

EmeraldA

•3 years ago

3 Replies

Shielding update

Hi all. Has anyone received an official email yet from the government in England . Just read a press release from gov.uk to announce shielding to end from...

Hi all. Has anyone received an official email yet from the government in England...

poly2

•3 years ago

36 Replies

General MPN

Could someone help me in explaining what general MPN is?

Tocat

•3 years ago

5 Replies

Italfarmaco Announces Publication of Positive Long-term Data for Givinostat in Polycythemia Vera Patients in Blood Cancer Journal

« — Four-year mean follow-up data demonstrate an overall response rate (ORR) of over 80% throughout the follow-up period — — Randomized, double-blind Phase 3...

« — Four-year mean follow-up data demonstrate an overall response rate (ORR) of ...

Manouche

•3 years ago

1 Reply

Runners with PV

Hello all! Have just been told about this forum and I am so pleased to have found you! I am looking for somebody to talk to regarding levels of fitness and...

Hello all! Have just been told about this forum and I am so pleased to have foun...

Mrsbrinners

•3 years ago

5 Replies

Covid vaccine booked

Booked my vaccine on 30th this month, but the clinic booked my 2nd dose 13 weeks after 1st dose instead of 12 weeks. Does it make any difference? Anyone has...

Booked my vaccine on 30th this month, but the clinic booked my 2nd dose 13 weeks...

Lifam

•3 years ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2021

MPN Voice Face Masks

Jak2 positive but I'm healthy

Finally start treatment

Protagonist Therapeutics to Initiate Global Phase 3 Study for Rusfertide in Polycythemia Vera Following Interactions with FDA and EMA

Future clinical trial with good evidence

Allergies

Fatigue and exercise

Platelets and Family History - Familial (Malignant) versus Hereditary (Benign) Thrombocytosis

INR spikes with warfarin

FDA Rejects Ropeginterferon alfa-2b for Polycythemia Vera

Third painting for MacMillan Nurses

Starting Besremi

Help to lose weight with under active thyroid

Dupuytren’s contracture and PV

Sleep Apnea and mpns

Lack of energy

Dizziness when starting HU

High red blood cells

Thrombosis trigger to AstraZenica vaccination discovered - not yet peer reviewed

Early symptoms have vanished

Does anyone know how I can get hold of the MPN Voice leaflet about MPNs?

COVID vaccines and risk of blood clots

ET and awaiting results

Angioplasty

Thought this update on ET was interesting

Shielding update

General MPN

Italfarmaco Announces Publication of Positive Long-term Data for Givinostat in Polycythemia Vera Patients in Blood Cancer Journal

Runners with PV

Covid vaccine booked

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