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Adjusting to life with temporal arteritis
Polymyalgia Rheumatica (PMR) | Last Active: Jan 13 9:52am | Replies (217)Comment receiving replies
I was diagnosed with GCA in July of 2019. Had all the symptoms and was waiting for an appointment to see a doctor, but went to the ER when I lost sight in my left eye for about 15 to 20 minutes. The ER doctor diagnosed it immediately and sent me for a biopsy which confirmed it. I was put on 80 mg. of prednisone which looking back was probably too high because I got avascular necrosis and had to have a shoulder replacement. I've been trying to taper my prednisone which has been very difficult. I got down to 10 and was doing great. Playing golf again, exercising and feeling wonderful, but several times trying to get to 5 has been very difficult. Terrible neck, shoulder and back pain. Taking my dog for a walk around the block is hard. I come home exhausted. My advice is try and get lots of sleep and try to stay positive.
Replies to "I was diagnosed with GCA in July of 2019. Had all the symptoms and was waiting..."
Your symptoms,etc. sound just like what I have been through. I started out at 80 mg. about 18 months ago and finally made it to 15 mg. My endocrinologist decided to get me off of Prednisone and go on Hydrocortisone. It’s been brutal.
Hi @marda I can't imagine 80 mg of prednisone! You really must have felt wired. I had a couple of episodes of no vision in my right eye, short lived, but I didn't pursue any kind of diagnosis then. You were quite smart in going to the ER immediately. My Rheumatologist told me tapering is a fine art. It does have to be done gradually and in increments without great shock to the body. Maybe 5 mg of prednisone is too low for you. As I get to the lower dosages (currently at 3 mg), my doc tells me to taper by 1 mg a month. I hope you feel better soon.
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Hi @marda, Do you mind sharing the dosage that you tapered down when you got below 10 mg? My rheumatologist gave me an RX for 5, 2.5 and 1 mg tablets which made it easier to go down slowly.