Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,842 posts

All posts for December 2021

New Covid pills, which one?

FDA just approved the Pfizer pill, Paxlovid. Very good news. Another pill from Merck, Molnupiravir, is supposed to be authorized soon. (It is already in UK)...

FDA just approved the Pfizer pill, Paxlovid. Very good news. Another pill from...

EPguy

•3 years ago

3 Replies

FDA Approval Does Not Mean What You Think It Does!

“The Department of Health and Human Services’ (DHHS) Food and Drug Administration (FDA) is well known to Americans, as are their terms “FDA approval” and...

“The Department of Health and Human Services’ (DHHS) Food and Drug Administratio...

Manouche

•3 years ago

3 Replies

Covid and Jakavi.

I was diagnosed with ET in 2016, and I have had Myelofibrosis since 2017, so taking Jakavi ruxolitinib , I spoke to my haematologist today, and asked him if...

I was diagnosed with ET in 2016, and I have had Myelofibrosis since 2017, so tak...

Andrew8

•3 years ago

8 Replies

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Booster jab is not a booster jab

Really confused received my booster Covid vaccination in October but has not shown up in my NHS Covid pass. When asked why not they stated that the 3rd vaccine...

Really confused received my booster Covid vaccination in October but has not sho...

Grizly

•3 years ago

14 Replies

Update and thank you for your support

I would like to thank everyone who replied to my post about the doubts my haematologist raised about my SCT. The wisdom and support here really does make a...

I would like to thank everyone who replied to my post about the doubts my haemat...

Otterfield

•3 years ago

14 Replies

Crimble wishes

Hello people - just a quick post (before I head to the kitchen for a ‘festive baking session’) to wish all on the forum a peaceful Xmas - everyone stay safe...

Hello people - just a quick post (before I head to the kitchen for a ‘festive ba...

amhann

•3 years ago

10 Replies

JAK2 and TET2

Does anyone else here have this double mutation? After nearly three years of Pegasys my JAK2 has dropped from over 80% to c. 14% but my TET2 has only dropped...

Does anyone else here have this double mutation? After nearly three years of Peg...

Paul123456

•3 years ago

6 Replies

Important phone numbers if you test positive for Covid in Scotland

Scottish NHS Inform has now updated information as to what to do if we test positive for covid - it includes very important telephone numbers:...

Scottish NHS Inform has now updated information as to what to do if we test posi...

DJK12

•3 years ago

10 Replies

Christmas 2021 message

Hello everyone It’s that time of year again for the round-up of the MPN Voice year, and what a year it has been for us all! COVID-19 continued to challenge...

Hello everyone It’s that time of year again for the round-up of the MPN Voice ye...

Mazcd

Partner•3 years ago

20 Replies

New data on mRNA booster vs antibody, bigger dose works better

Moderna just came out with booster data and Pfizer did so recently. These data on mRNA boosters show that more is better by the criteria tested. Also there...

Moderna just came out with booster data and Pfizer did so recently. These data ...

EPguy

•3 years ago

5 Replies

Email received: New Treatments for Covid.

Hi everyone, I have just received an Email today from NHS informing me that I will be having delivered a PCR test to keep at home and use if I get Covid...

Hi everyone, I have just received an Email today from NHS informing me that I wi...

azaelea

•3 years ago

56 Replies

Worrying appointment today

Today I had an appointment with my regular haematologist and we discussed the results of a BMB I had a couple of weeks ago. She had hoped to see some reduction...

Today I had an appointment with my regular haematologist and we discussed the re...

Otterfield

•3 years ago

38 Replies

Info on HU

Hydroxycarbamide ABOUT by how much does 1000 mg per day reduce immunity , please?

Hydroxycarbamide ABOUT by how much does 1000 mg per day reduce immunity , ple...

Whitegate

•3 years ago

12 Replies

Access in Scotland to Covid treatments/boosters

I wonder if other Scottish forum members have seen this update from three days ago about our eligibility for treatment if we have the bad luck to develop...

I wonder if other Scottish forum members have seen this update from three days a...

DJK12

•3 years ago

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ET not yet diagnosed

Hi everyone, I’m a newbie to the group, a 49 year old very anxious female in the UK. My GP picked up on two separate high platelet counts during two routine...

Hi everyone, I’m a newbie to the group, a 49 year old very anxious female in the...

Purdy13

•3 years ago

9 Replies

Scales are slow to budge

Has anyone had success losing weight while taking Hydroxy? I've been trying for several months and it's a painfully slow process. I'm on a daily regimen of...

Has anyone had success losing weight while taking Hydroxy? I've been trying for...

Hidden

•3 years ago

11 Replies

Taking Plavix (generic clopidogrel) for PV

I have tried Hydroxyurea and Anagrelide but both of them were intolerable for me. I was getting ready to go on Jakafi (very expensive as others have pointed...

I have tried Hydroxyurea and Anagrelide but both of them were intolerable for me...

Bluetoday1

•3 years ago

5 Replies

Weighted blankets

Does anyone know if weighted blankets are ok for us to use. Just I read they are not suitable for everyone and wondered if that includes people with MPN’s....

Does anyone know if weighted blankets are ok for us to use. Just I read they are...

Bield

•3 years ago

9 Replies

Getting the 4th Covid Vaccine + Boosters for Household Teens

Hi. Just wanted to share my recent experience in the hope it may help others. I have been trying to get my 17 year old's booster as she is a household contact...

Hi. Just wanted to share my recent experience in the hope it may help others. I...

MWxxxx

•3 years ago

4 Replies

Do PV patients need a fourth Covid vaccine?

I have PV and am on hydroxyurea. I'm very confused - and not getting clear guidance from my hematologist. Should PV patients go for a fourth shot? If so,...

I have PV and am on hydroxyurea. I'm very confused - and not getting clear guid...

souplover

•3 years ago

2 Replies

Hija

We’ll I am on hydroxycarbamide, same thing , because I have Polycythemia Vera , also diagnosed in 2018, also very rare. I t belongs to the same group of...

We’ll I am on hydroxycarbamide, same thing , because I have Polycythemia Vera ...

Triergirl55

•3 years ago

1 Reply

On the merry go round again! I know I’m no poet but just wanted to share!

Time passes, no matter what, Seconds, minutes, days not caught, We have come through a difficult year Some are safe, some no longer here. We still carry on,...

Time passes, no matter what, Seconds, minutes, days not caught, We have come thr...

Aime

•3 years ago

40 Replies

STAYING WARM OUTSIDE

Hi, You may be wanting to socialize outdoors to avoid covid but it’s too cold. Before I left the cold weather up north in December we saw people wearing...

Hi, You may be wanting to socialize outdoors to avoid covid but it’s too cold. ...

katiewalsh

•3 years ago

15 Replies

Covid immune response on hydroxyurea

Hi everyone, From this list, I learned that PV patients on hydroxyurea should consider themselves as immune compromised and should have a third and possibly a...

Hi everyone, From this list, I learned that PV patients on hydroxyurea should co...

souplover

•3 years ago

15 Replies

Clinical Experience with Ropeginterferon Alfa-2b in the Off-Label Use for the Treatment of COVID-19 Patients in Taiwan(Besremi)

In addition to the indications for PV and ET, Besremi expects the phase 3 clinical success of the new coronavirus. Judging from the current coronavirus...

In addition to the indications for PV and ET, Besremi expects the phase 3 clinic...

andrew_huang

•3 years ago

1 Reply

mds/mpn-rs-t

Does anyone out there have this specific diagnosis. I was diagnosed with it in 2018 and was told it was rare. I am on hydroxyurea and aspirin and that is...

Does anyone out there have this specific diagnosis. I was diagnosed with it in ...

woodmonkey

•3 years ago

8 Replies

Myelofibrosis diagnosis

Hi, I'm the wife of someone who has just been diagnosed with myelofibrosis , his haematologist said its at stage 2 of 4. He will be starting Pegasys interferon...

Hi, I'm the wife of someone who has just been diagnosed with myelofibrosis , his...

Mrswhyte2019

•3 years ago

31 Replies

Medicare Denies Besremi Coverage - the Saga Begins

It appears that at this point Medicare is refusing to cover Besremi despite is being FDA approved in November. Here is the text of the denial letter I...

It appears that at this point Medicare is refusing to cover Besremi despite is b...

hunter5582

•3 years ago

44 Replies

Update 6.0

On the whole, news is quite good. Ongoing recovery from the brain surgery, resection of tumor in June 2019, is going well. The MRI on 12/15 looks really...

On the whole, news is quite good. Ongoing recovery from the brain surgery, res...

hunter5582

•3 years ago

26 Replies

Booster vs third dose

I am taking Hydrea and have received 2 doses of Moderna. My MPN specialist said all I need is a Moderna booster. My local hematologist however disagrees and...

I am taking Hydrea and have received 2 doses of Moderna. My MPN specialist said ...

Ashtin

•3 years ago

9 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for December 2021

New Covid pills, which one?

FDA Approval Does Not Mean What You Think It Does!

Covid and Jakavi.

Booster jab is not a booster jab

Update and thank you for your support

Crimble wishes

JAK2 and TET2

Important phone numbers if you test positive for Covid in Scotland

Christmas 2021 message

New data on mRNA booster vs antibody, bigger dose works better

Email received: New Treatments for Covid.

Worrying appointment today

Info on HU

Access in Scotland to Covid treatments/boosters

ET not yet diagnosed

Scales are slow to budge

Taking Plavix (generic clopidogrel) for PV

Weighted blankets

Getting the 4th Covid Vaccine + Boosters for Household Teens

Do PV patients need a fourth Covid vaccine?

Hija

On the merry go round again! I know I’m no poet but just wanted to share!

STAYING WARM OUTSIDE

Covid immune response on hydroxyurea

Clinical Experience with Ropeginterferon Alfa-2b in the Off-Label Use for the Treatment of COVID-19 Patients in Taiwan(Besremi)

mds/mpn-rs-t

Myelofibrosis diagnosis

Medicare Denies Besremi Coverage - the Saga Begins

Update 6.0

Booster vs third dose

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