Posts - MPN Voice | HealthUnlocked

MPN Voice

10,512 members • 14,508 posts

All posts for April 2021

Covid antibodies

I was at my hospital for usual bloods pre starting interferon next month. They also tested me for covid antibodies as I had my second jab the week before....

I was at my hospital for usual bloods pre starting interferon next month. They ...

Jonnymitts

•3 years ago

11 Replies

FDA, CDC recommend "pause" for Johnson & Johnson vaccine in US due to reports of blood clots

6 reports of clots within 2 weeks of receiving the vaccine. Appears to be very rare (6 reports out of 6.8 million doses). To be clear, this SHOULD NOT deter...

6 reports of clots within 2 weeks of receiving the vaccine. Appears to be very r...

cmc_ufl

•3 years ago

2 Replies

Astra Zeneca Vaccine.

Hello everyone, Here's hoping you are all feeling a little better now we have sunshine in the mix. I have just had my second AZ vaccine . There were so many...

Hello everyone, Here's hoping you are all feeling a little better now we have su...

bordeauxgirl

•3 years ago

5 Replies

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Diet - What to stay away from

Hi Guys Is there foods to stay away from when having PV - I am vegan but some foods i eat , i get burning sensations and hot flushes throughout the body and...

Hi Guys Is there foods to stay away from when having PV - I am vegan but some f...

Shelds

•3 years ago

9 Replies

Genome editing to model and reverse a prevalent mutation associated with MPN

“Much work remains to be done regarding the safety of therapeutic gene editing, but there is accumulating evidence that causative mutations in monogenic...

“Much work remains to be done regarding the safety of therapeutic gene editing, ...

Manouche

•3 years ago

7 Replies

Taking Hydrea - PV

Hi All, I wanted to fins out how old you were when you got diagnosed with PV as i am 27 and started a month now on Hydrea but my bloods were good but seem to...

Hi All, I wanted to fins out how old you were when you got diagnosed with PV as...

Shelds

•3 years ago

22 Replies

Fatigue

Having awful PV fatigue last couple of days ... have had them many times but sometimes days like these I force myself to do something, anything to move but...

Having awful PV fatigue last couple of days ... have had them many times but som...

Hidden

•3 years ago

7 Replies

Heart valves

Hello, world! Im 32 my name is crystal. Last year i was admitted to the hospital for a kidney infection that somehow turned into a blood infection. Then was...

Hello, world! Im 32 my name is crystal. Last year i was admitted to the hospital...

JRIMMY

•3 years ago

1 Reply

Hey guys!

Hey guys im new to this group , and still not to sure what its all about therewas someone i was just trying to reply to and i had make an account. So...

Hey guys im new to this group , and still not to sure what its all about therewa...

JRIMMY

•3 years ago

3 Replies

Nice (old) study examining platelet count fluctuation between measurements

Most of us know that platelets counts cycle as much as +/- 50 throughout the day. Here is a great reference examining variation between platelet count...

Most of us know that platelets counts cycle as much as +/- 50 throughout the day...

cmc_ufl

•3 years ago

2 Replies

New person

Hello, I got the ET diagnosis on 31 March and I’m still trying to get my head round it. Reading about the side effects of the medication scared me but reading...

Hello, I got the ET diagnosis on 31 March and I’m still trying to get my head ro...

Esi22

•3 years ago

11 Replies

Vaccine effects on blood and BP

Hello everyone, am wondering if anyone experienced a spike in RBC WBC and Platelets after taking the vaccine? as my husband who has PV and has taken the first...

Hello everyone, am wondering if anyone experienced a spike in RBC WBC and Plate...

Rheanick

•3 years ago

1 Reply

Free Lateral Flow tests.

Morning everyone. I'm not sure whether everyone is aware of this. I only found out a few days ago, everyone is now being encouraged to take two Lateral Flow...

Morning everyone. I'm not sure whether everyone is aware of this. I only found o...

Kari1961

•3 years ago

16 Replies

HAPPY SPRING

Happy Spring everyone !

Mrs_Average

•3 years ago

2 Replies

Email to the CEO of the MHRA - please also email this lady

Dear Dr Raine, Please accept my apologies for contacting you directly. I am 67 and was diagnosed with polycythemia vera 12 years ago. I have since been taking...

Dear Dr Raine, Please accept my apologies for contacting you directly. I am 67 a...

Loubprv

Volunteer•3 years ago

12 Replies

Ps. To last post

Wondering if alternate days of Hydroxy would be a gentler (possibly )slow reduction in platelets? I’ve got JAK2. V 617F

Wondering if alternate days of Hydroxy would be a gentler (possibly )slow reduc...

Mostew

•3 years ago

6 Replies

In need of encouraging words please !!!

I had results of blood test yesterday . Platelets creeping up . 916 2 months ago . Now 968 I’m only taking aspirin and LOTS of natural supplements. I feel...

I had results of blood test yesterday . Platelets creeping up . 916 2 months ago...

Mostew

•3 years ago

69 Replies

K2

Hi ... is anyone taking K2 and are you taking any other medications while using K2 and what is your experience?????

Hi ... is anyone taking K2 and are you taking any other medications while using ...

Hidden

•3 years ago

11 Replies

Just had first Moderna shot!

Great day! One step toward normalcy.

cmc_ufl

•3 years ago

9 Replies

ET, JAK2+, Etc. Newly Diagnosed and Feeling Like One of the Lucky Ones

Hello, Everyone. I'm one of the new kids on the block. Yes, it's the block across the Pond. Other details about my disease: SRSF2 and del(20Q) and platelets...

Hello, Everyone. I'm one of the new kids on the block. Yes, it's the block acr...

EssThro

•3 years ago

26 Replies

Next Steps for Research With Interferon-Alpha in Polycythemia Vera

« “We recognize that IFN is not a curative treatment—not everyone will respond to it and not everyone is a candidate to receive it. [However, if we] at least...

« “We recognize that IFN is not a curative treatment—not everyone will respond t...

Manouche

•3 years ago

5 Replies

Unable to get Antibody test NHS

I mentioned that I intended to ask my Haematologist if she could arrange an antibody and T cell test with my next blood test. I heard from her yesterday that...

I mentioned that I intended to ask my Haematologist if she could arrange an anti...

azaelea

•3 years ago

9 Replies

Spleen Pain with ET.

pretty sure it’s my spleen giving me pain. Started two days ago and feels like a bad stitch especially when moving. Any ideas? Phoned my clinical nurse who I...

pretty sure it’s my spleen giving me pain. Started two days ago and feels like a...

Klys

•3 years ago

2 Replies

Tinkerbell

Hi Tina, could you PM me your address as I am on your last mouse so I will be sending them early next week x

Hi Tina, could you PM me your address as I am on your last mouse so I will be se...

jillydabrat

•3 years ago

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Has the vaccine worked?

I had both Pfizer vaccines at the beginning of the year. I asked for an antibody test and was told it was negative. Does that mean the jabs didn’t work, or...

I had both Pfizer vaccines at the beginning of the year. I asked for an antibod...

skipperL

•3 years ago

11 Replies

Funding for Ruxolitinib

I have ET JAK2 and been on HU for 4 years which has given me serious side effects the latest severe breathing problems. As an alternative medication my...

I have ET JAK2 and been on HU for 4 years which has given me serious side effect...

Heather270240

•3 years ago

21 Replies

Guidance from MPN specialist needed please, on whether to have Astra-Zeneca 2nd dose.

Hi, I’m due my second Astra-Zeneca vaccine in the next couple of weeks. Would welcome any updates from MPN specialists whether we should still have it after...

Hi, I’m due my second Astra-Zeneca vaccine in the next couple of weeks. Would w...

SDJD

•3 years ago

33 Replies

I've booked my 2nd appointment via NHS site rather than wait to be called.

All, I've just booked my 2nd jab for the vaccine online via the NHS website. It's allowed me to go to a location which is closer than when I had the 1st jab...

All, I've just booked my 2nd jab for the vaccine online via the NHS website. It'...

MarkD6701

•3 years ago

2 Replies

Is it just me?

I find the possible link between the AZ vaccine and rare blood clots somewhat confusing as the clots appear to be associated with Low platelets? Am I missing...

I find the possible link between the AZ vaccine and rare blood clots somewhat co...

beetle

•3 years ago

9 Replies

Many abnormalities in my full blood count

hi, i got my blood test results and would like some help figuring it out as my appointment to review my results is quite far away. I had a platelet count of...

hi, i got my blood test results and would like some help figuring it out as my a...

Inihs

•3 years ago

6 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2021

Covid antibodies

FDA, CDC recommend "pause" for Johnson & Johnson vaccine in US due to reports of blood clots

Astra Zeneca Vaccine.

Diet - What to stay away from

Genome editing to model and reverse a prevalent mutation associated with MPN

Taking Hydrea - PV

Fatigue

Heart valves

Hey guys!

Nice (old) study examining platelet count fluctuation between measurements

New person

Vaccine effects on blood and BP

Free Lateral Flow tests.

HAPPY SPRING

Email to the CEO of the MHRA - please also email this lady

Ps. To last post

In need of encouraging words please !!!

K2

Just had first Moderna shot!

ET, JAK2+, Etc. Newly Diagnosed and Feeling Like One of the Lucky Ones

Next Steps for Research With Interferon-Alpha in Polycythemia Vera

Unable to get Antibody test NHS

Spleen Pain with ET.

Tinkerbell

Has the vaccine worked?

Funding for Ruxolitinib

Guidance from MPN specialist needed please, on whether to have Astra-Zeneca 2nd dose.

I've booked my 2nd appointment via NHS site rather than wait to be called.

Is it just me?

Many abnormalities in my full blood count

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