Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for March 2020

Missing letters?

Just for info sharing. I called my GP surgery today to see whether I should have had a letter re extreme vulnerability. They told me that NHS digital have...

Just for info sharing. I called my GP surgery today to see whether I should have...

Ovingite

•4 years ago

30 Replies

Severe Tinnitus : hydroxycarbamide vs interferon

Hello everybody, I hope some of you can help me with an answer... I have had PV for over 30 years, JAK2 positive, clopidogrel, flebotomies. Seven years ago I...

Hello everybody, I hope some of you can help me with an answer... I have had P...

Gabrielle79

•4 years ago

17 Replies

Covid 19/MPNs - Shielding or Not!

This is my story, it's quite long but if you read to the end, hopefully there is a point to it! In 2013 I had a PE post surgery and was very poorly. I was told...

This is my story, it's quite long but if you read to the end, hopefully there is...

Trueblue8

•4 years ago

4 Replies

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Confused!!!

Hi everyone. Hope I have done this correctly!! I am confused as I slip between vulnerable and at high risk. Just rang my GP and I was told all the high risk...

Hi everyone. Hope I have done this correctly!! I am confused as I slip between ...

janetmcg

•4 years ago

9 Replies

Transfusions

I have to go for five-weekly transfusions. (I have Myelofibrosis and am on Ruxo and Epo injections) I am extremely worried about going to the hospital. Two...

I have to go for five-weekly transfusions. (I have Myelofibrosis and am on Ruxo ...

skipperL

•4 years ago

18 Replies

Mutual Aid. Supporting vulnerable people

Mutual Aid supporting vulnerable and at risk people Hi. Wanted to make sure if everyone on here who is at high risk and vulnerable knows about Mutual Aid....

Mutual Aid supporting vulnerable and at risk people Hi. Wanted to make sure i...

Sanga

•4 years ago

1 Reply

'Benefits' of being classified as "extremely vulnerable"

Hello my MPN friends - I hope you are all keeping well. By now, you will probably all have seen the advice posted by MPN Voice re COVID-19. Being just over 70...

Hello my MPN friends - I hope you are all keeping well. By now, you will probabl...

Ovingite

•4 years ago

41 Replies

COVID-19 Outbreak: Advice for Patients with Myeloproliferative Neoplasms (MPNs) 30th March 2020

Please look at the NHS website for the latest information and follow updates on the news and television. Advice is changing frequently. Please make sure you...

Please look at the NHS website for the latest information and follow updates on ...

Mazcd

Partner•4 years ago

72 Replies

Has anybody heard from Maz?

Just a little concerned as I haven't seen any posts from Maz lately. Has anybody heard from her?

Just a little concerned as I haven't seen any posts from Maz lately. Has anybody...

jillydabrat

•4 years ago

7 Replies

This is keeping me sane

I am teaching myself to paint to stop myself from worrying about the madness that is life right now. What are you doing to keep your brain or body active?

I am teaching myself to paint to stop myself from worrying about the madness tha...

jillydabrat

•4 years ago

32 Replies

Hearing

Hi! Since yesterday, I feel a pulse in my right ear. All the ear doctors are closed. There’s only one open. They aren’t taking new patients. They told me...

Hi! Since yesterday, I feel a pulse in my right ear. All the ear doctors are c...

Flowers1973

•4 years ago

11 Replies

PV on hydroxycarbamide and aspirin ckd 3 Coronavirus no letter or text from nhs

I have today spent all the morning trying to find out why I have not received the shielding letter being sent out by nhs. I have rang my haematologist’s...

I have today spent all the morning trying to find out why I have not received th...

Hughley

•4 years ago

4 Replies

Update for those awaiting "Vulnerable Person List" letters

After chasing my tail phoning health departments to find out if I am on the Vulnerable Person List, I had the most helpful call from BloodWise a short while...

After chasing my tail phoning health departments to find out if I am on the Vuln...

jillydabrat

•4 years ago

90 Replies

Pycnogenol verses Aspirin

My Naturopathic Dr said to try alternating my Hemo’s advice of daily 81 mg of aspirin with 100 mg of Pycnogenol since the later has less negative effects on...

My Naturopathic Dr said to try alternating my Hemo’s advice of daily 81 mg of as...

Mpncoda

•4 years ago

6 Replies

Benefits and Negative Effects of Aspirin Therapy

It has been a year since my diagnosis of triple negative ET. Upon finding that I tested negative for the Von Willebrand Syndrome (aspirin causing bleeding),...

It has been a year since my diagnosis of triple negative ET. Upon finding that ...

Jschwab

•4 years ago

8 Replies

MPN + Neurofibromatosis Type 1 (RASopathy)?

Have been wondering how many others on the MPN forum have been diagnosed with both a MPN and Neurofibromatosis Type 1 or another RASopathy? Specifically...

Have been wondering how many others on the MPN forum have been diagnosed with bo...

hunter5582

•4 years ago

2 Replies

Anti-inflammatory Training

Just got a notice regarding an on-line training titled "An Anti-inflammatory Lifestyle" from the Institute for Brain Potential (cost $79.00 US). I have...

Just got a notice regarding an on-line training titled "An Anti-inflammatory Lif...

hunter5582

•4 years ago

4 Replies

Coronovirus update

Hi everyone, I post info regarding my haematologist being in touch and his advice, I am extremely grateful that I have an excellent haemo who has been very on...

Hi everyone, I post info regarding my haematologist being in touch and his advi...

Simris

•4 years ago

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Clarity

Are those with ET JAK2 and taking Hydroxy in the At Risk Group? I seek clarity from the NHS, can any one from the NHS please clarify as there are conflicting...

Are those with ET JAK2 and taking Hydroxy in the At Risk Group? I seek clarity ...

G1DRA

•4 years ago

10 Replies

Extremely Vulnerable letter

Hi everyone, hope you are all keeping safe. My question is has anyone received the NHS letter saying they are in the Extremely Vulnerable group? I saw on the...

Hi everyone, hope you are all keeping safe. My question is has anyone received t...

eastwood1932

•4 years ago

47 Replies

Confused.com

Hi thank you for letting me join the group. I have ET Jak2 and take aspirin. Is there any clarification as to whether we are classed as vulnerable and have to...

Hi thank you for letting me join the group. I have ET Jak2 and take aspirin. Is ...

Nixxx

•4 years ago

10 Replies

Coronovirus uodate

Good morning to all my friends, I just wanted to share with everyone that I had a phone call from my haematologist to update me on what is going to happen...

Good morning to all my friends, I just wanted to share with everyone that I had...

Simris

•4 years ago

43 Replies

Coronavirus - vulnerable group confirmation.

Hi All I have ET and am on Peg and aspirin. My blood counts are well controlled and I'm generally fit and well. I have the flu jab every year - as instructed...

Hi All I have ET and am on Peg and aspirin. My blood counts are well controlled ...

Loubielou

•4 years ago

22 Replies

Anagrelide and high blood pressure?

I’ve been on Anagrelide for a few years without any problems, but I’ve recently developed very high blood pressure and palpitations, my GP has prescribed...

I’ve been on Anagrelide for a few years without any problems, but I’ve recently ...

lizzziep

•4 years ago

6 Replies

This helped with my anxiety and maybe it can help you

You are not reading this by accident. Everything is going to be okay. Breathe and remember that you have been in this place before. You have been this...

You are not reading this by accident. Everything is going to be okay. Breathe ...

h2ogal

•4 years ago

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Letter Arrived to Confirm if Vulnerable etc, Covid-19 & Hydroxycarbamide...

Many are uncertain of our positions during these Unprecedented Times.. Had the Txt few days back to say I’m Vulnerable 😱 Letter arrived today from my GP...

Many are uncertain of our positions during these Unprecedented Times.. Had the T...

pontygirl

•4 years ago

8 Replies

Haematology phone call.

Haematology phone call. So I've just had a call from the haematology department at my local hospital. (Ayrshire and Arran). My next appointment was for Monday...

Haematology phone call. So I've just had a call from the haematology department...

RobPV

•4 years ago

4 Replies

How to register as high risk if you have not already been informed that you are on the register

Hi all, Am new to this site, but hope I am able to make a very useful contribution Spoke to my GP on the phone today after my son and wife, both hospital...

Hi all, Am new to this site, but hope I am able to make a very useful contributi...

denisep12

•4 years ago

45 Replies

Who decides on high risk or not?

Hi all I have seen all the posts and am as confused as most of you to know if I will be receiving a letter or not? I have managed to speak to my haematology...

Hi all I have seen all the posts and am as confused as most of you to know if I...

Gunner73

•4 years ago

5 Replies

Update..

PV, JAK2+ Hydroxy and Pega. Been up and down with my hct, they added Interferon about 2 years ago, not much change, some venesections etc. Over the last...

PV, JAK2+ Hydroxy and Pega. Been up and down with my hct, they added Interferon...

shiftzz

•4 years ago

4 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2020

Missing letters?

Severe Tinnitus : hydroxycarbamide vs interferon

Covid 19/MPNs - Shielding or Not!

Confused!!!

Transfusions

Mutual Aid. Supporting vulnerable people

'Benefits' of being classified as "extremely vulnerable"

COVID-19 Outbreak: Advice for Patients with Myeloproliferative Neoplasms (MPNs) 30th March 2020

Has anybody heard from Maz?

This is keeping me sane

Hearing

PV on hydroxycarbamide and aspirin ckd 3 Coronavirus no letter or text from nhs

Update for those awaiting "Vulnerable Person List" letters

Pycnogenol verses Aspirin

Benefits and Negative Effects of Aspirin Therapy

MPN + Neurofibromatosis Type 1 (RASopathy)?

Anti-inflammatory Training

Coronovirus update

Clarity

Extremely Vulnerable letter

Confused.com

Coronovirus uodate

Coronavirus - vulnerable group confirmation.

Anagrelide and high blood pressure?

This helped with my anxiety and maybe it can help you

Letter Arrived to Confirm if Vulnerable etc, Covid-19 & Hydroxycarbamide...

Haematology phone call.

How to register as high risk if you have not already been informed that you are on the register

Who decides on high risk or not?

Update..

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