Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for January 2021

Omega 3 supplements

Hello, Happy New Year ! Please do you know if it is ok to take Omega3 supplements? And also which supplements would you recommend? I am vegan so don’t eat any...

Hello, Happy New Year ! Please do you know if it is ok to take Omega3 supplement...

Kdavie12

•3 years ago

19 Replies

Pv and jak2

Hi all I’ve just been diagnosed in November with PV and am Jak2 positive also my doctor says it’s not a serious condition but the more I read about it the...

Hi all I’ve just been diagnosed in November with PV and am Jak2 positive also m...

Breffni3

•3 years ago

10 Replies

Just need to vent

Hi, All, I haven’t written in a while but I’ve been following many of the discussions about vaccines. I’m scheduled to have the Pfizer vaccine in a park on...

Hi, All, I haven’t written in a while but I’ve been following many of the discus...

Cja1956

•3 years ago

26 Replies

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ET high Liver enzymes

Hello, I am 43 and was diagnosed with ET and positive JAK.My level of platelets count is around 500.I discovered it after a splenic vein thrombosis in...

Hello, I am 43 and was diagnosed with ET and positive JAK.My level of platelets ...

Nick43nick

•3 years ago

3 Replies

Vaccines ok for MPNs

I asked Professor Harrison if we should avoid the Oxford vaccine in light of reports it is live, particularly Prof David Salisbury saying on BBC that people...

I asked Professor Harrison if we should avoid the Oxford vaccine in light of rep...

francesb

•3 years ago

4 Replies

Treatment and Hydrea costs in New Zealand

I hope there are some Kiwis out there. My wife is a NZ citizen and we are looking to relocate there in a year or so. My question is what are treatment costs...

I hope there are some Kiwis out there. My wife is a NZ citizen and we are looki...

ETOhio21

•3 years ago

9 Replies

Elevated platelets

Hi I’m 37 with my platelets at 1,450 been having this issue since 2016 my doctor has no clue still and she’s just monitoring me. I am extremely frustrated she...

Hi I’m 37 with my platelets at 1,450 been having this issue since 2016 my doctor...

faith949

•3 years ago

36 Replies

Vaccinate or not?

I have just spoken with my haematologists office and asked what is recommended for those taking Hydroxy etc. We are advised to have a vaccination, it doesn't...

I have just spoken with my haematologists office and asked what is recommended f...

Jennytheb

•3 years ago

8 Replies

Vaccine live or not

I've been hunting around and came across this on the MS Society website. Sorry I couldn't copy the link for some reason so I hope the screen shot is legible....

I've been hunting around and came across this on the MS Society website. Sorry I...

Otterfield

•3 years ago

4 Replies

Confirmation please

Hi Mazcd Could you please put everyone’s minds at rest and clarify via consultants, if vaccines live or not , can be administered if you are on peg interferon...

Hi Mazcd Could you please put everyone’s minds at rest and clarify via consultan...

Hearingu

•3 years ago

2 Replies

Do symptoms of ET abate with treatment?

Does the medication help with the fatigue or is that just going to be an ongoing issue? I was just diagnosed with ET with the JAK2 mutation 2 days ago. When I...

Does the medication help with the fatigue or is that just going to be an ongoing...

nightshadow

•3 years ago

20 Replies

One for Prof Harrison via Maz?

While I was having my transfusion today I overheard a nurse telling a patient that if they were on any type of immunosuppressive treatment that that should be...

While I was having my transfusion today I overheard a nurse telling a patient th...

beetle

•3 years ago

9 Replies

Compromised immune system

My wife has MF and no spleen. Being on hydroxy and anagrelide her platelets are within normal limits. Her white cell count is always high though. The...

My wife has MF and no spleen. Being on hydroxy and anagrelide her platelets are ...

jointpain

•3 years ago

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Et and tiredness

recently I have been feeling so tired after work more than usual 😴 really interfering with home life exercise etc not sure if its et related but any...

recently I have been feeling so tired after work more than usual 😴 really inter...

Irishgal12

•3 years ago

12 Replies

Spatone allergic reaction

I have been recommended to take spatone which is water infused iron sachet but I’m just worried about an allergic reaction. Is this something possible? Or...

I have been recommended to take spatone which is water infused iron sachet but I...

Sallylouisexo

•3 years ago

3 Replies

Sheilding

We are best to use our gut feeling on what is right for us. Re . Sheildingxxx

Mostew

•3 years ago

8 Replies

Confused !!

Spoke to my haematoligist earlier, my count was 461 she suggested uping my hydroxcycarbnmide I already take 1000 mg daily with clopidgril so said no. Lots of...

Spoke to my haematoligist earlier, my count was 461 she suggested uping my hydro...

ciye

•3 years ago

18 Replies

PV and Covid

I have done a search on this site and may have missed a post about this, but has any PV patient currently treated with Pegasys been unfortunate enough to catch...

I have done a search on this site and may have missed a post about this, but has...

Whatsisname

•3 years ago

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Surviving Covid

Hi everyone. I have PV and early MF. I take Ruxolitinib . I am 44. I have shielded as many of us have. As a family with 3 children, we have been very careful...

Hi everyone. I have PV and early MF. I take Ruxolitinib . I am 44. I have shield...

MamPRV

•3 years ago

7 Replies

MPN fundraising

Just to say thank you to my son and all the other fundraisers on just giving. I wasn’t really aware of all the very generous (in time, effort and cash) people...

Just to say thank you to my son and all the other fundraisers on just giving. I ...

SuET2017

•3 years ago

2 Replies

What defines ‘Extremely Vulnerable’ for MPN?

Is everyone with an MPN classified as Extremely Vulnerable? I’m EV but assumed because I have very low Lymphocytes/T cells on top of PV. The risks with Covid...

Is everyone with an MPN classified as Extremely Vulnerable? I’m EV but assumed b...

Paul123456

•3 years ago

19 Replies

ET to shield or not to shield, that is the question?

Why are all GP's not singing from the same hymn page ?

Lainy1

•3 years ago

37 Replies

Pharmacogenomics and Nutrigenomic

Did you start this way? I dont find an expert in this field. I think it makes sense for us. Tell me, please

Did you start this way? I dont find an expert in this field. I think it makes se...

SoledadBarcelona

•3 years ago

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Unsure whether I have a new Vitamin D deficiency, but seriously thinking that I do...

I’m a 65 year old male, and twice in the past 3 years I have been diagnosed with having a deficiency of Vitamin D. The condition was diagnosed after I...

I’m a 65 year old male, and twice in the past 3 years I have been diagnosed with...

Kellan38

•3 years ago

6 Replies

Lockdown

Oh no looks like we going to be shielding again not gurd😔Xx

Jody00

•3 years ago

7 Replies

Fed up!!

I'm fed up! shield then not go back to work shield again taking the piss. I've just got a new job and starting to regret it, not what you want. I don't want...

I'm fed up! shield then not go back to work shield again taking the piss. I've ...

Avamia94

•3 years ago

4 Replies

Hydroxyurea and Septic System maintenance

I wonder if anyone has had problems with septic system failure due to contamination with HU? If so, what is the solution? I have read that chemotherapy or...

I wonder if anyone has had problems with septic system failure due to contaminat...

Planti

•3 years ago

5 Replies

ITCHING and PV

I have had Polycythemia Vera for 11 years controlled with Hydrea 2xdaily, only my leucocyte count keeps going up and Monocytes are off the scale, just up and...

I have had Polycythemia Vera for 11 years controlled with Hydrea 2xdaily, only m...

lucieboo

•3 years ago

31 Replies

Has anyone received their vaccine yet based on their condition

Hi again my MPN family. I know it’s early days but when you get the call from your GP or health clinic to get your vaccination because of your condition can...

Hi again my MPN family. I know it’s early days but when you get the call from y...

jillydabrat

•3 years ago

42 Replies

Lightheaded/Dizziness

Hi ... I have PV...has anyone experienced sudden lightheadedness/dizziness spells?? Kind of freaks me out it’s so sudden. Just seems to come out of nowhere....

Hi ... I have PV...has anyone experienced sudden lightheadedness/dizziness spel...

Hidden

•3 years ago

11 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2021

Omega 3 supplements

Pv and jak2

Just need to vent

ET high Liver enzymes

Vaccines ok for MPNs

Treatment and Hydrea costs in New Zealand

Elevated platelets

Vaccinate or not?

Vaccine live or not

Confirmation please

Do symptoms of ET abate with treatment?

One for Prof Harrison via Maz?

Compromised immune system

Et and tiredness

Spatone allergic reaction

Sheilding

Confused !!

PV and Covid

Surviving Covid

MPN fundraising

What defines ‘Extremely Vulnerable’ for MPN?

ET to shield or not to shield, that is the question?

Pharmacogenomics and Nutrigenomic

Unsure whether I have a new Vitamin D deficiency, but seriously thinking that I do...

Lockdown

Fed up!!

Hydroxyurea and Septic System maintenance

ITCHING and PV

Has anyone received their vaccine yet based on their condition

Lightheaded/Dizziness

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