Your symptoms are a mystery

Hi dear friends,

I did see my rheumatologist today and the first thing he told me was he didn't like how my treatment progresses, how the CRP count is (up again) and that I'm not improving after more than two month of 60 mg Prednisone. The unique marker for GCA is still a positive biopsy, which I didn't have.

I told him about this feeling of immobility or stiffness in my jaw, the feeling of not hearing well enough sometimes, my temple ache mostly left side every day.

He said it's a mystery. He is not sure what it is. Next step will be to have an CT-scan of the jaw joint and try an additional medication. He did an ultrasound of the right armpit artery and it looked very healthy..yeahh!

So maybe I don't have GCA. Maybe it's something else, but what? Something 60 mg Prednisone doesn't help to reduce.

What ever it is, it's persistent. But I'm too. Thank you for listening!

3 Replies

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  • Hope it helps to write it down. I know it doesn't give the answers but as the saying goes - a problem told is a problem halved! Good luck.

  • This all sounds a bit unusual from everything I have read on this forum and elsewhere regarding GCA but others with expertise will point you in some more useful directions. After nearly a month on 60mg myself for suspected GCA (unable to have the TA biopsy as had a lower dose for 'PMR' for a month or so beforehand) I can sympathise about that aspect anyway - it sure is an intense 'ride' - but assuming ultimately a 'no brainer' if eyesight is at risk.

    Whatever might be happening I hope you can get some more definitive answers soon.

    Best Wishes

    Rimmy

  • Thank you and all the best for you as well!

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