24 months ago dx’d PMR-GCA. Was at 9 mg. GCA flare on 12/30 and now at back at 60 due to headache and jaw claudification..

[Anniegal]

I was dx PMR in 2/2019 with high suspicion of GCA. GCA Biopsy never completed due to subsequent cardiac stent and early lung cancer dx. Both treated. Good results. Down to 9 and had GCA flare 12/30/2020. Visual and jaw claudification. Treated in ER and Now back at 60. Devastated. Will l ever get off prednisone? Will l have Cushing Syndrome all over again?. I eat KET0. My blood sugar is 5.7. Managed to lose 35 lbs. Just devastated to have this set back. How fast can I titrate without risk?

[piglette]

When did you get Cushings Syndrome the first time? With pred you are unlikely to get any adrenal symptoms above 7.5mg dose.

[Anniegal in reply to piglette]

About 8 weeks. Fat pads around neck, hair loss, bruising, fatigue, facial hair, muscle weakness, etc. l stayed on strict food plan and managed to avoid diabetes; dealt with a stent and cancer dx. I thought I was out of the woods. I am grateful l can see. Feeling fragile.

[alvertta]

I had my flare at 9 in July 2020 I feel your pain. At 17 now reducing 1 per week. Plus actemra every second week. Good luck! 💕

[DorsetLady PMRGCAuk volunteer]

Yes you will get off Pred at some stage, but rather than worrying about reducing at the moment (upsetting as it may be to be back at 60mg) ,you need to be concentrating on whether your symptoms are fully controlled or not.

Sight loss is a lot more devastating than weight gain, weight can be addressed, sight loss cannot.