Posts - MPN Voice | HealthUnlocked

MPN Voice

10,431 members • 14,373 posts

All posts for April 2021

Overall fatigue and muscle weakness

I have PV Jak2+ and was diagnosed in June 2020. Started with Phlebotomy and baby aspirin and am now on 500mg HU daily.My question is does the fatigue and...

I have PV Jak2+ and was diagnosed in June 2020. Started with Phlebotomy and baby...

Ridenez

•3 years ago

7 Replies

Alcohol after Oxford Vaccine shot?

I just had second Oxford vaccine shot yesterday, slight headache and fatigue but nothing major. i usually have a few glasses of wine at the weekend, ie one...

I just had second Oxford vaccine shot yesterday, slight headache and fatigue bu...

ainslie

•3 years ago

13 Replies

Platelets and haemoglobin

After having platelet reading of 800 it went down to 510 now today a stand in for my haematologist has phoned and said it is 540 and has upped the hydroxyl,...

After having platelet reading of 800 it went down to 510 now today a stand in fo...

Hidden

•3 years ago

13 Replies

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antibody testing research study

Has anybody else received this offer to take part in a Covid 19 Antibody Research Study? Received mine today. Apparently they are selecting people at random....

Has anybody else received this offer to take part in a Covid 19 Antibody Researc...

jillydabrat

•3 years ago

11 Replies

Taking statins with high platelets

Hi , I have high platelet count , et , I take aspirin only at the moment , I’ve just been prescribed statins from my gp ,I’ve been searching for info and it...

Hi , I have high platelet count , et , I take aspirin only at the moment , I’ve ...

Dbh1962

•3 years ago

14 Replies

Covid Antibody Research Study

Hi Folks , , after recent discussion here about whether or not to pay £49 for a Antibody Test kit I have just opened a letter inviting me to partake in a study...

Hi Folks , , after recent discussion here about whether or not to pay £49 for a ...

JediReject

•3 years ago

36 Replies

flirt_2015

Hi all you nice people. I got my first vaccine (AstraZeneca) yesterday, feeling a bit rough today with flu like symptoms, has anyone else experienced this...

Hi all you nice people. I got my first vaccine (AstraZeneca) yesterday, feeling...

flirt_2015

•3 years ago

4 Replies

Questions for Dr.

Hello! Tomorrow husband has his first appointments with both leukaemia dept and hematologist since his MF diagnosis. (after a year of prefibrotic MF) Are...

Hello! Tomorrow husband has his first appointments with both leukaemia dept and...

TM76

•3 years ago

7 Replies

Protection during sexual intercourse

Hello everyone, I read many concerns recently on this forum over conflicting advice given about protection during sexual intercourse whilst on Hyroxy. I had a...

Hello everyone, I read many concerns recently on this forum over conflicting adv...

Linda1950

•3 years ago

26 Replies

Rapid aging of facial skin with Pegasys?

I am almost embarrassed to ask this but here goes. Since starting on Pegasys (have had 9th injection today given every 2 weeks 45mg until today upped to...

I am almost embarrassed to ask this but here goes. Since starting on Pegasys (h...

Planti

•3 years ago

44 Replies

Out of breath

Hi I have ET and I am on Hydrea does anyone get out of breath on it please

Windy51

•3 years ago

13 Replies

Does constipation ever cease while on Hydrea?

I'm on Hydrea 5500mg/week for ET, which has been the dose for a few months now. Platelets are now normal (low 300's), but I believe that I will be on a...

I'm on Hydrea 5500mg/week for ET, which has been the dose for a few months now. ...

Hidden

•3 years ago

9 Replies

MPN in the news

Hi all, I thought you might be interested to see an MPNer has made the UK news. Story below 🙂 Please note that Rae has explained that she is not Laura, the...

Hi all, I thought you might be interested to see an MPNer has made the UK news. ...

Rae25

•3 years ago

16 Replies

MPN Caregivers - Webinar

Something of interest for the wonderful caregivers who assist those with MPNs. This is a Webinar for MPN Caregivers sponsored by MPN Advocacy & Education...

Something of interest for the wonderful caregivers who assist those with MPNs. ...

hunter5582

•3 years ago

2 Replies

COVID Vaccinations for family members

Hi everyone, I have ET CALR which is just being managed with Aspirin. After seeing the letter from Prof Harrison, I contacted my surgery about having the...

Hi everyone, I have ET CALR which is just being managed with Aspirin. After see...

Mickymitch

•3 years ago

9 Replies

Bone pain in myelofibrosis

Hello, all! I had to write to you because I’m desperate for answers. I was in the emergency room last Wednesday for what I thought was just a kidney...

Hello, all! I had to write to you because I’m desperate for answers. I was in t...

Cja1956

•3 years ago

23 Replies

Jilly's Mice.

I would to like to say thank you very much to the forums very own creative artist, jillydabrat for sending me these beautiful mice which arrived yesterday...

I would to like to say thank you very much to the forums very own creative arti...

Tico

•3 years ago

11 Replies

Hydroxyurea/pinching-itching

Has anyone actually had hydroxyurea relieve severe all over PV pinching/itching ?? Curious... I heard that it has happened. Anyone here have that happen for...

Has anyone actually had hydroxyurea relieve severe all over PV pinching/itching ...

Hidden

•3 years ago

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Anyone have peripheral blood smear/blood film in their ET diagnosis process? What did it show?

As a precaution in my diagnosis process (possible triple-negative ET, but unconfirmed at this point since my platelets are borderline ~430-450), my specialist...

As a precaution in my diagnosis process (possible triple-negative ET, but unconf...

cmc_ufl

•3 years ago

16 Replies

Vitamin D insufficiency

I have the jak2 mutation. It’s not clear which MPN I have as a bone marrow biopsy was inconclusive. My platelets reached 541 and the HCT reached 51.6. I...

I have the jak2 mutation. It’s not clear which MPN I have as a bone marrow biop...

Dan73

•3 years ago

29 Replies

Advice on arthritis

Hi I have arthritis in my foot can anyone let me know if it safe to use ibuprofen gel I have ET JAK2 if not any advice on what I can use please 🤔

Hi I have arthritis in my foot can anyone let me know if it safe to use ibuprof...

Tilly_Rose

•3 years ago

6 Replies

Hydroxycarbamide and hayfever

Hi everyone, hope you are all well and enjoying the sun. How does everyone find their hayfever while on HU? I was fine while taking anagrelide and found that...

Hi everyone, hope you are all well and enjoying the sun. How does everyone find ...

GK40

•3 years ago

5 Replies

Pain in ribs

I’ve had good platelet count 418, White cells and haemoglobin are very low. I have been getting pain in my left side of the ribs for a couple of weeks. (2nd...

I’ve had good platelet count 418, White cells and haemoglobin are very low. I ...

wendycu

•3 years ago

1 Reply

Unsure what to do, they cancelled my long awaited appointment!

Hey, I posted here a while ago that I was being investigated why my red blood cell count has been up for a while now. I had an appointment (REFERAL booked)...

Hey, I posted here a while ago that I was being investigated why my red blood c...

HereForAWhile

•3 years ago

8 Replies

“Interferon” with MPN hematopoietic stem cells

« In this issue of Blood, Rao et al reveal important insights into how hematopoietic stem cell (HSC) subpopulations contribute to myeloproliferative neoplasm...

« In this issue of Blood, Rao et al reveal important insights into how hematopoi...

Manouche

•3 years ago

8 Replies

MPN-MATE ~ SYDNEY TO COFFS HARBOUR FUNDRAISER RIDE ~ COMPLETED! 8-)

(Picture of Frank my support Driver & good buddy Arrawarra Beach Headland, 35km north of Coffs Harbour ~ We did it! Yay! 8-) Post by MPN-MATE Admin » Fri...

(Picture of Frank my support Driver & good buddy Arrawarra Beach Headland, 35km...

socrates_8

•3 years ago

34 Replies

Which private Covid Antibody Test should I buy? (UK)

Hi, I'd like to buy a Covid antibody test. Although I am still not going in to shops or mixing with people outside of my bubble I do babysit my grandchildren...

Hi, I'd like to buy a Covid antibody test. Although I am still not going in to ...

Lettie_WP

•3 years ago

10 Replies

Pain

Hi I have ET has anyone tried medicinal marijuana at all I’m sick of taking pain killers wondering if something natural like this might help

Hi I have ET has anyone tried medicinal marijuana at all I’m sick of taking pain...

Windy51

•3 years ago

18 Replies

Newish to MPN - Looking for recommendation for MPN Specialist to pay for 2nd opinion

I am Jak2 positive but my BM biopsy didn't confirm whether I have PV or ET. At the first glace my hemotologist assumed ET but now I am anemic but also have a...

I am Jak2 positive but my BM biopsy didn't confirm whether I have PV or ET. At t...

WithMPN2020

•3 years ago

23 Replies

Covid antibody test result

Hi All, I said I would post my results. I carried out the antibody test 3 weeks after my second Pfizer vaccine. To say I am disappointed is putting it...

Hi All, I said I would post my results. I carried out the antibody test 3 week...

piggie50

•3 years ago

70 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2021

Overall fatigue and muscle weakness

Alcohol after Oxford Vaccine shot?

Platelets and haemoglobin

antibody testing research study

Taking statins with high platelets

Covid Antibody Research Study

flirt_2015

Questions for Dr.

Protection during sexual intercourse

Rapid aging of facial skin with Pegasys?

Out of breath

Does constipation ever cease while on Hydrea?

MPN in the news

MPN Caregivers - Webinar

COVID Vaccinations for family members

Bone pain in myelofibrosis

Jilly's Mice.

Hydroxyurea/pinching-itching

Anyone have peripheral blood smear/blood film in their ET diagnosis process? What did it show?

Vitamin D insufficiency

Advice on arthritis

Hydroxycarbamide and hayfever

Pain in ribs

Unsure what to do, they cancelled my long awaited appointment!

“Interferon” with MPN hematopoietic stem cells

MPN-MATE ~ SYDNEY TO COFFS HARBOUR FUNDRAISER RIDE ~ COMPLETED! 8-)

Which private Covid Antibody Test should I buy? (UK)

Pain

Newish to MPN - Looking for recommendation for MPN Specialist to pay for 2nd opinion

Covid antibody test result

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