Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for October 2021

Teeth again

I commented a couple of weeks ago about problems with my teeth since taking Hydroxy. Well, I was called by a very junior doctor for my 10 week phone...

I commented a couple of weeks ago about problems with my teeth since taking Hydr...

jillydabrat

•3 years ago

13 Replies

Thank you Tesco

Not only have the Government told people they do not have to shield anymore, they have told supermarkets that they should stop priority slots to the vulnerable...

Not only have the Government told people they do not have to shield anymore, the...

jillydabrat

•3 years ago

11 Replies

3rd Jab

After trying several times to book a 3rd jab and getting nowhere - GP denied all knowledge of such things! CCG not dealing with 3rd doses/boosters. Anyway I...

After trying several times to book a 3rd jab and getting nowhere - GP denied all...

lizzziep

•3 years ago

9 Replies

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Ongoing knee pain

I just have a question: I was diagnosed with PV 3-19 treating with baby aspirin and phlebotomy only. I also have osteoarthritis in knees. I had a knee...

I just have a question: I was diagnosed with PV 3-19 treating with baby aspir...

Alex9621

•3 years ago

15 Replies

3rd jab good and bad

The good news… Received my letter for my booster jab. Arrived at the vaccination centre asked the lady at the desk which vaccine I will be having explaining I...

The good news… Received my letter for my booster jab. Arrived at the vaccination...

Grizly

•3 years ago

29 Replies

3rd dose of Aztrazenica Vaccine

3rd Aztrazenica vaccine, Hi everyone hope you’re all well.does anyone had their 3rd dose of Aztrazenica jab? Any issues so far? I’m getting mine but still...

3rd Aztrazenica vaccine, Hi everyone hope you’re all well.does anyone had their ...

Marimar05

•3 years ago

18 Replies

Freedom

Hi does anyone know if you haven’t had a jab overseas are you stopped from going anywhere I live in Australia we are being alianated here is this the same all...

Hi does anyone know if you haven’t had a jab overseas are you stopped from going...

Windy51

•3 years ago

2 Replies

Jab today

Hi everyone just to let you know what I was told today I had my Pfizer jab today and was told it was a full dose but on my vaccine card there is a sticker...

Hi everyone just to let you know what I was told today I had my Pfizer jab toda...

Poppy6060

•3 years ago

8 Replies

Government be damned

Yesterday I had a letter from the government saying that now all the adult population in the UK have been offered their vaccinations, that there is no further...

Yesterday I had a letter from the government saying that now all the adult popul...

jillydabrat

•3 years ago

23 Replies

Where is best to go?

Hi guys Well, I am pretty sure we will be moving to Stratford upon Avon in the next few weeks. We are looking to go into an extra care scheme with...

Hi guys Well, I am pretty sure we will be moving to Stratford upon Avon in the ...

jillydabrat

•3 years ago

10 Replies

Results

I had appointment over phone yesterday's morning at last ask me how I've been said am full of flu at moment with bad cough 🤧 the joys of winter flu my...

I had appointment over phone yesterday's morning at last ask me how I've been s...

Jody00

•3 years ago

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heartburn

i was diagnosed in May with E.T just told to take an aspirin a day, had a follow up few months later with haematologist then told see you in 6 months, she...

i was diagnosed in May with E.T just told to take an aspirin a day, had a follo...

doglover49

•3 years ago

39 Replies

TPD - The continuing saga

On BBC Radio 4 this morning. Nick Robinson interviewed the Minister for Health, Edward Argar on the Today Programme, about the problems with the Booster...

On BBC Radio 4 this morning. Nick Robinson interviewed the Minister for Health, ...

eatentrifles

•3 years ago

8 Replies

About MF progression

I have progressed this year to MF from ET with grade 3 fibrosis. I'm reasonably well in myself but my platelets have slumped to 70. I started on 5mg...

I have progressed this year to MF from ET with grade 3 fibrosis. I'm reasonably ...

Scaredy_cat

•3 years ago

29 Replies

Bone Marrow Biopsy States grade 1 fibrosis. Is this normal for ET?

Hi All, I had the results of my bone marrow biopsy and on the letter it states grade 1 fibrosis. I am a little concerned with the word “fibrosis”. I have...

Hi All, I had the results of my bone marrow biopsy and on the letter it states g...

Threelions

•3 years ago

8 Replies

Muscle Twitching

Hi Everyone, I hope everyone is keeping well. I have a question about muscle twitching. Is this a symptom of ET? I used to think it was because I run but I...

Hi Everyone, I hope everyone is keeping well. I have a question about muscle twi...

EmeraldA

•3 years ago

6 Replies

Symptoms with MF

Hello My husbands initial diagnosis of CMML has now been changed to primary myleofibrosis. He has an ache on his lower right hand side which won’t go away.....

Hello My husbands initial diagnosis of CMML has now been changed to primary myle...

Hopert

•3 years ago

5 Replies

3rd Jab Scotland?

Reading a lot of posts about the 3rd jab but most relate to England. I'm wondering if anyone in Scotland has had theirs yet? Was it by invite or walk-in? I...

Reading a lot of posts about the 3rd jab but most relate to England. I'm wonderi...

DENICE66

•3 years ago

38 Replies

Physician says he won’t order therapeutic phlebotomy for my hematocrit at 48.1 and I’m female!

I’m mad! So mad. My dr says Hydrea is what I should stay on to lower my WBC’s, RBC’s, HCT and platelets! I have been on it for a year and that hasn’t happened....

I’m mad! So mad. My dr says Hydrea is what I should stay on to lower my WBC’s, R...

Wewo01

•3 years ago

18 Replies

Night Sweats

Hi everyone, I am looking for some feedback on night sweats. 42 years old (live in Ireland), diagnosed with ET in 2017, progressed to MF in 2020. Been having...

Hi everyone, I am looking for some feedback on night sweats. 42 years old (live ...

Navy12

•3 years ago

3 Replies

2021 International Congress on MPNs - Brooklyn, Oct 28-29, 2021

Hi everyone, Not sure if someone else posted about this. They are doing the conference both in person and virtual. Go to www.mpncongress.com. Free virtual...

Hi everyone, Not sure if someone else posted about this. They are doing the con...

gvibes

•3 years ago

6 Replies

MPN PV @ Hydra

Is there any time after months of hydra when you need to stop the medicine for sometime or need adjustment , to allow blood counts to rise again a bit and to...

Is there any time after months of hydra when you need to stop the medicine for ...

neela2020

•3 years ago

3 Replies

Thank you for your support

I had so many lovely and supportive replies to my post about my decision to go ahead with the SCT that I thought I would post again to thank you all. When it...

I had so many lovely and supportive replies to my post about my decision to go a...

Otterfield

•3 years ago

15 Replies

Hydroxycarbamide

That's me been on tablets now for 10 days , I haven't had any side effects so far . Still don't feel great still have bone pain sweats and fatigue. My results...

That's me been on tablets now for 10 days , I haven't had any side effects so fa...

indy22

•3 years ago

5 Replies

Pegasys Update

Had bloodwork done yesterday and spoke with my MPN specialist today. Good news is that the Pegasys has really (so far) brought my platelets down. After one...

Had bloodwork done yesterday and spoke with my MPN specialist today. Good news i...

Solyesh

•3 years ago

14 Replies

Christmas Cards

Good morning Maz, Do you know when the Christmas cards will be coming out this year? Hope you are keeping well. Many thanks. Judy 💐

Good morning Maz, Do you know when the Christmas cards will be coming out this y...

piggie50

•3 years ago

5 Replies

Video of the MPN Voice ‘Virtual’ Patients’ Forum – Liverpool/Chester/N Wales, now available to view

Held on Friday 15th October 2021 The video of the forum is now available to view on the MPN Voice YouTube channel. Click on the link below to view the video....

Held on Friday 15th October 2021 The video of the forum is now available to view...

Mazcd

Partner•3 years ago

2 Replies

Micro blood clot in toe

Hi, hope everyone is feeling as well as possible. I was diagnosed with ET JAK2 positive in 2016, my platelets have never really been higher than 550 however I...

Hi, hope everyone is feeling as well as possible. I was diagnosed with ET JAK2 p...

Janlol

•3 years ago

15 Replies

Haemoglobin level dropping, spleen scan, bone marrow biopsy

Hi everyone, haemoglobin levels being relevant is a new thing to me, apparently they’ve been going down since February (seems to coincide with taking peg,...

Hi everyone, haemoglobin levels being relevant is a new thing to me, apparently ...

Joetcalr

•3 years ago

9 Replies

Anyone had problems with elevated Liver function tests while taking Hydroxycarbamide…. Would be pleased to get some information ….

ET mpl on Hydroxycarbamide 500 mgms daily …

Kilmichael

•3 years ago

10 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2021

Teeth again

Thank you Tesco

3rd Jab

Ongoing knee pain

3rd jab good and bad

3rd dose of Aztrazenica Vaccine

Freedom

Jab today

Government be damned

Where is best to go?

Results

heartburn

TPD - The continuing saga

About MF progression

Bone Marrow Biopsy States grade 1 fibrosis. Is this normal for ET?

Muscle Twitching

Symptoms with MF

3rd Jab Scotland?

Physician says he won’t order therapeutic phlebotomy for my hematocrit at 48.1 and I’m female!

Night Sweats

2021 International Congress on MPNs - Brooklyn, Oct 28-29, 2021

MPN PV @ Hydra

Thank you for your support

Hydroxycarbamide

Pegasys Update

Christmas Cards

Video of the MPN Voice ‘Virtual’ Patients’ Forum – Liverpool/Chester/N Wales, now available to view

Micro blood clot in toe

Haemoglobin level dropping, spleen scan, bone marrow biopsy

Anyone had problems with elevated Liver function tests while taking Hydroxycarbamide…. Would be pleased to get some information ….

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