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Giant Cell Arteritis questions

Polymyalgia Rheumatica (PMR) | Last Active: 3 hours ago | Replies (31)

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Profile picture for tryingtogetbacktome @tryingtogetbacktome

To share my story, I was diagnosed with GCA at 65 and put on prednisone. I chose not to take Actemra. So on 60 mg/day for 6-8 wks then 50, 40, 30, 20 each for a month then 17.5, 15, 12.5 each for 2 wks then from 10 to 2 mgs I reduced by 1 mg/month. I had cushings, insomnia, wt gain, etc. At 2 mg, my body was hurting n balking at giving up prednisone so I lowered by .5 only each month (1.5, 1, .5, 0). It took me 1.75 yrs. I gained 30 lbs. My CRP is staying normal now 2 yrs off prednisone. I set up appts w/ a cardiologist, carotid artery vascular dr, eye dr within 3 mo of starting prednisone due to its possible side effects. It's scary having GCA and dealing with it and each case seems so individual. We all just do the best we can.

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Replies to "To share my story, I was diagnosed with GCA at 65 and put on prednisone. I..."

@tryingtogetbacktome I will only use Prednisone. I had a couple of flares because doctors tried to taper me too fast. I'm going slow tapering 1/2 mg a month. I'm at 6 mgs. When I get to 5 I will stay there for awhile. I tried one injection of Actemra and ended up in the emergency room with breathing issues. The only side affects from Prednisone in the past year and a half has been weight gain and insomia. 20 lbs. The lower I get on dosage I am slowly losing the weight. Everyone is different, I just listen to my body.