Replies to Hi @karo89135, my GCA returned earlier than I suspected. I had severe neck and head pain…

← Return to Prednisone and change in hair texture

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Polymyalgia Rheumatica (PMR) | Last Active: Sep 16 11:28pm | Replies (28)

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@tsc

Hi @karo89135, my GCA returned earlier than I suspected. I had severe neck and head pain which I thought were muscle aches. I lost my appetite and experienced malaise. That's kind of like a gray cloud surrounding me where the thought of doing things is overwhelming. I also felt faint when I got up in the mornings. The pains in the head became tingling, numbing pains.
When I went for my Medicare checkup I asked the Nurse practitioner to order a CRP because I was "feeling things." CRP was elevated. The rheumatologist tried a Prednisone quick pack, but after the last dosage CRP had doubled so he put me back on 40 mg prednisone and brought up an Il 6 inhibitor which I have not taken yet. I'm down to 10 mg of prednisone now.

I had the temporal artery biopsy when I was first diagnosed and it wasn't painful. I did get general anesthetic.The incision healed quickly and I really didn't feel it.
GCA can result in permanent blindness so visual disturbance is serious.
Have you been on high doses of prednisone all these years?

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Replies to "Hi @karo89135, my GCA returned earlier than I suspected. I had severe neck and head pain..."

karo89135 | @karo89135 | Sep 12 4:39pm

Yes, 60 mg in the first year. Doctors said since I was being treated it wouldn’t be accurate. My sed rate was never over 40, they also decided since it wasn’t over 60, no point which is their marker. I gained 40 pounds, couldn’t sleep and ate everything available. I also have Fuchs dystrophy so wonder if that causes my vision issues.
I think I read here that after almost 8 years on constant prednisone..if GCA, it would have been treated.
During that time, I had 2 knee replacement with also a revision, Covid twice. My body doesn’t like any of that. Also, I’ve never been so sick since the vaccines. Such is life but I’m resilient.
Interesting you had general anesthesia for your procedure.
What was your CRP and Sed rate? Here, the sed rate seems to rule…Las Vegas. One CRP was over 1000 but was told lab error. The auto immune panel was positive but when each disease was looked at, nothing was positive. Thank you so much for your reply. I’m still trying to get more facts.
Karo

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