Adjusting to life with temporal arteritis

I empathize with your concerns following your diagnosis with GCA. I was confirmed with GCA in mid-October, and immediately put on 50 mg of prednisone daily. It probably started a few weeks previously. ( I had developed PMR symptoms over the summer, but ignored them until mid-September. ) I also responded very quickly to the prednisone, and the symptoms rapidly, or gradually, were gone. I am currently on 15 mg daily, have been since the beginning of November, and hoping to soon reduce again.
I have had one virtual visit with a rheumatologist. He appears to be a man of few words, so I did not get much of an idea what to expect in the future. This is the great puzzle for me, as I do not know, when I seem to be experiencing symptoms, if they are part of the PMR/GCA package, or a result of the prednisone, or just me aging. For example, I have developed slight shaking of my hands, which I do not remember experiencing before. I am wondering if this is something others have also experienced as part of the PMR/GCA/prednisone journey? There seem to be more questions than answers when dealing with PMR/GCA.

@mark2471
Ask about transitioning to a biological such as Actimra. Remaining on prednisone, even intermittently is fraught with complications. If you have a diagnosis of GCA and have been on prednisone, you need to see a retinologist.

@lally
Get yourself a rheumatologist that will see you in person (and examine you) it took me 6 months and I’m a health care provider. You also need to see an ophthalmologist. If you train on prednisone, yo need a Dexascan.

@pbrumlik I did get in to see an ophthalmologist, and promptly, too. As for getting a rheumatologist with time to provide some in-depth support, that sounds like a pretty high order here in Ontario. Apparently they are a rare bird here. I recently tried to contact him for some guidance in reducing my prednisone dosage, but to be honest, I will be very surprised if I receive any reply.

@ropnrose
You need a confirmation of your diagnosis. GCA primarily manifests as a unilateral headache as well as jaw claudication. See a rheumatologist

@pbrumlik I was immediately (same day) referred to a rheumatologist following blood work results. Based on those results and my symptoms, the rheumatologist started treating me for GCA and PMR. I had bilateral temporal biopisies 8 days later, which were negative, but the report stated that it wasn't conclusive that I didn't have GCA.

@ropnrose you do not need a positive biopsy for GCA. This is a clinical diagnosis. If you are on prednisone, it eventually should be tapered and you should be converted to a biological (Actmera). You also need to see a retinologist to evaluate your eye and a dexascan depending on how long you have been on prednisone. GCA is an autoimmune disease that can last up to two years. You are lucky that you got to see a rheumatologist quickly.

@lally
Get yourself a rheumatologist that will see you in person (and examine you) it took me 6 months and I’m a health care provider. You also need to see an ophthalmologist. If you train on prednisone, yo need a Dexascan.