Giant Cell Arteritis Diagnosis

Hello! What you woke up to that morning is exactly what happened to me this past April, only it was in just one eye. You described it perfectly!! Was that in both eyes for you? And what is your vision like now? I hope your vision is back to normal. I was immediately put on steroid infusions every 24 hours for 4 days and have been on prednisone ever since. I also do Actemra infusions every 4 weeks. My vision in that eye has gotten better, but there are still grey blotchy areas. And yes, my prednisone tapering has definitely caused fatigue. Thank you for everything you wrote! And I am so thankful for this group as well!

To @kathren, this is totally my opinion from my own GCA experience, lots of research, and long conversations with my Concierge primary care doc and my Rheum doc. I agree you should be on 40-60mg prednisone. If you have GCA, you need treatment ASAP to forego potential vision problems. September is too long to wait. If you can’t get this quickly, I would go to a hospital emergency room if possible, tell the why you are concerned about GCA. If not possible, ask your PA to research GCA, if necessary, and get that high dose prednisone. Any doc can prescribe. Standard of care, according to my docs, is that if GCA is suspected, it is appropriate to begin high dose prednisone, and then continue on to confirmation with carotid ultrasound or biopsy. Good luck to you.

Yes mine was in my right eye only. My vision in that eye is still blotchy and grey areas. That has not improved. Guess this is my new norm now. I am so thankful it was not worse. My Neuro Ophthalmologist did not want to put me on Actemra. No clue why. I went last week for my visit and she has me on 1 mg 3 times a day for 1 week, then 2 mg/day for 1 week, then down to 1 for 1 week. Then one every other day. I fell about a month ago and have been having terrible arm and shoulder pain. They checked it out and can not find anything wrong with it. Now the other arm is also hurting and I do believe it is pain from prednisone withdrawals. Good luck and God Bless you with this diagnosis. Thanks also for responding.

Myself as well. I have had PMR for well over a year now and been on Prednisone since Jan. 2022. Was tapering nicely when the jaw and head pain started on or about Jan. 21/23. Went to ER. They got hold of a Rheumatologist on call. She put me up to 60 mg. Prednisone and after 2-3 days the pains subsided. Then saw my own Rheumatologist who said biospy was inconclusive and started reducing the Prednisone to 50 mg. Needlesstosay, the pains were back within 3 days. Could not reach her (never can) and so went back up to 60 mg. for 5 days now. Seems to be alleviating so much of the pain and I will not start tapering yet. She is a "let's get down to 1 mg. as fast as we can" person. However, sleep is escaping me. Waking up around 3 and that's it for the night. I also have a sciatic nerve issue at the moment and Prednisone does not touch that, so Ibuprofen/Tylenol is my go to, but of course it's affecting the stomach. Darned if you do or don't. Went to Ophthamologist on Jan. 24. He could see no significant change in eyes; only that cataracts had grown and wee bit. Optic nerve looks good. Have a follow-up with him end of February. A little worrisome for me is that I've been a little out of breath, shaky particularly in the mornings (enough to make me sit down) and of course extremely fatigued and if I could actually get hold of my Rheumatologist I might also need some tests done for heart/artery issues - or not. All the best Laurie. ~ Deb

This is late commentary, but hope you quit taking ibuprofen for pain. Tylenol is okay when you're on prednisone but no NSA IDs. Maybe someone else can benefit if they haven't been given this information. It's amazing what doctors don't bother to tell you.