I've taken the in-house antibody test: Even after... - PMRGCAuk

PMRGCAuk

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I've taken the in-house antibody test

Roy46 profile image
8 Replies

Even after 6 years of GCA and daily pred and monthly blood tests. I still find it difficult to have blood take from me. That's what the antibody test required and it took a week for me to summon up the courage for the tiny finger prick. After the traumatic experience I had to take a photo of the blood sample and then upload it and send to Imperial College London, what a performance.

The upshot is that I am IgM, which apparently means that I have antibodies, but they do not stay long in my body. So what does that mean for us? No idea if there's a follow up.

I've been on 7mg since February, my usual tapering is reduce by 0.5mg every six weeks. I've had a clamping feeling on my head for a few months now, so haven't reduced, but it feels better now. Time to try a reduction. Especially as my two lasted ESR/CRP scores have been between 2-8. So from tomorrow it's 6.5 for me.

Enjoy the furnace weather

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Roy46 profile image
Roy46
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8 Replies
SnazzyD profile image
SnazzyD

I think they are still trying to work out what the various levels mean for long term immunity in reality with Covid.

Why were you having monthly blood tests for 6 years for GCA? Did you have issues?

Roy46 profile image
Roy46 in reply to SnazzyD

The tests became a bit of a ritual and a chance to discuss football with my GP ; comfort blanket. Given that my ESR/CRP scores were dancing around it took years to understand what was going on and get some stability. I'm there now and ready to take the next step

PMRpro profile image
PMRproAmbassador

Why did you do the test?

Roy46 profile image
Roy46 in reply to PMRpro

Unsolicited offer from University College Hospital. So nothing to lose, other than a small drop of blood, so I took the plunge

PMRpro profile image
PMRproAmbassador in reply to Roy46

Fair enough

SheffieldJane profile image
SheffieldJane

I am a complete baby about my blood sugar finger pricks, yet you can take gallons from my arm and I don’t turn a hair.

I wonder if your result means that immunity wouldn’t last long? Who knows?

You have mentioned the pressure in your head to your doctor haven’t you? It could be related to your Adrenal function beginning to kick in. I was quite symptomatic at your stage. Although there is always GCA that we have to be vigilant for. Take care.

Roy46 profile image
Roy46 in reply to SheffieldJane

I haven't mentioned head pressure to doctor as they all seem to have disappeared. Whenever I've asked for a doctors appointment recently it's been a telephone chat with a doctor I've never heard of or seen before. Your reference to maybe Adrenals kicking is so encouraging. I'll start on 6.5 tomorrow and see how I go in a weeks time. I've been on 6.5 before, a year ago, and then I had two severe chest infections, so it was up to 30. Fingers crossed this time

SheffieldJane profile image
SheffieldJane in reply to Roy46

Yes fingers crossed for you. I am doing the snakes and ladders thing too. PMRPro sent a link for a great, funny, accessible, article from the Lupus site on how immunity works. It may go some way to answering your antibodies question. Even if they fade, they can still kick in er sometimes. It was a new thread - recommended.

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