4th jab booster turbo update.: Despite getting... - MPN Voice

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4th jab booster turbo update.

Jonnymitts profile image
18 Replies

Despite getting pinged when I had the 4th booster I had some very good news today after my regular blood test.

My antibodies have now taken off!

Also my platelets are now down below 400 for the first time since starting interferon.

Win win

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Jonnymitts profile image
Jonnymitts
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18 Replies
conno61 profile image
conno61

Good news mate.Do they now check antibodies as a matter of course as I haven't heard of this ?

Jonnymitts profile image
Jonnymitts in reply toconno61

They have been at Hammersmith, I hardly had any after first two AZ then shot up after 3rd & 4th Pfizer. Might be allowed out to play soon. We were lucky to get the 3 points yesterday.

EPguy profile image
EPguy

That's amazing. Which shots did you get for each of the set of 4? Sorry for the extra question if you already posted that info.

Jonnymitts profile image
Jonnymitts in reply toEPguy

AZ x 2 then 2 Pfizer

EPguy profile image
EPguy

Looks like a good jump on the Pfizer. UK recommends that for boosters, is that right?

Jennytheb profile image
Jennytheb

Wow, what good news! Hope this really helps you.

akonline profile image
akonline

Thank you for sharing that information - amazing! I'm now off to get my 2nd booster. 😅

Hopetohelp profile image
Hopetohelp

Great news. How long have you been taking peg?

Jonnymitts profile image
Jonnymitts in reply toHopetohelp

Hi I started in July, kept getting delayed because of Covid. Only on 45mg every two weeks so a low dose.

My range before treatment was 750-950 & 726 when I started treatment and yesterday down to 383. It did stay around 450 for 3 blood tests.

I'm back in 4 weeks to see if still going down.

Hopetohelp profile image
Hopetohelp in reply toJonnymitts

Excellent progress. Wish mine would kick in as quickly. Patience is a virtue😂. Well done

EPguy profile image
EPguy in reply toJonnymitts

Have you received allele burden info? Reducing allele is a key potential benefit from INF (PEG, Besremi) It's best to have before starting INF for future reference. For most patients, the burden goes down after a couple years of INF.

You can get it from either blood or marrow test.

Jonnymitts profile image
Jonnymitts in reply toEPguy

I kept seeing people mention it on here. I understand when I was diagnosed in 2016 they didn’t have the test available then. When I discussed starting interferon I asked what is my allele burden and as it hadn’t been done they did the test & was VAF 40%

EPguy profile image
EPguy in reply toJonnymitts

According to

pubmed.ncbi.nlm.nih.gov/283...

CALR was identified just in 2013 so it makes sense you may not have had access to an allele test in 2016.

That's good you have VAF baseline. It is possible that 40% will decrease on INF.

Another allele measurement that is common now is Next Gen sequencing. This looks for other mutations, including "non-driver." These are likely to be important as knowledge quickly grows in recent years. I had 54 mutations checked.

Jonnymitts profile image
Jonnymitts in reply toEPguy

Thanks for the info!

Tilly_Rose profile image
Tilly_Rose

Great news I’m pleased for you mine are now under 400 too

Cja1956 profile image
Cja1956

Great news all around!

hunter5582 profile image
hunter5582

Woo Hoo!!

Threelions profile image
Threelions

Wow, that’s brilliant.

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