update

[Numptybrain]

Seen rheumatologist yesterday, he doesn’t believe it’s GCA but had bloods taken and arranged an urgent MRI brain just for reassurance due to previous bleed in 2016. He wants me to stay on 15mg prednisone for another 2 weeks then do staggering one day 15 next day 10 for 2 weeks then down to 10 again. If my eyes get worse I have to go straight to eye infirmary. As far as diagnosis, he’s still unsure, he also wants to start me on immunosuppressive treatment but because of treatment for cormormidities he needs to rethink so it’s still up in the air. The fluid has almost gone but I keep getting intermittent breathlessness, so he is unsure if preds are working even though the respiratory team have had that conversation with him, it’s the prednisone that’s removed the fluid. I could be breathless just because of the fluid being there for so long.

Wendy xx

[DorsetLady PMRGCAuk volunteer]

Thanks for update, and good luck.

[Numptybrain in reply to DorsetLady]

Thank you x

[PMRpro Ambassador]

All the best - and at least the rheumy is thinking!

[Numptybrain in reply to PMRpro]

He did seem better this time, but still no answers, it’s been over a year and a lot longer struggling with various things so hopefully with his help now, I might get somewhere.

Thank you

Wendy xx

[Mewy]

It sounds like your doctor wants to ease you to a lower dose rather than dropping to 10 mg immediately. Which sounds like a cautionary approach. I don't know enough about your breathlessness to provide a comment. I hope all goes well.

Mewy

[Numptybrain in reply to Mewy]

Thanks, I’ve had pleural effusion for over a year and the steroids are actually removing it but my breathless is intermittent which considering the fluid was there for such a long time I’m not surprised I’m still breathless are everything will take time to heal, I do feel rheumatologist is expecting instant recovery.