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Possible GCA

Polymyalgia Rheumatica (PMR) | Last Active: 1 day ago | Replies (19)

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@hi5rockymountain

Dear mehow: I started out with head pain while lying down to sleep. One a.m. I sat up in bed and my left eye went blind with a white steak which disappeared after a few seconds. Sat with coffee watching tv at 8:00 a.m. and had sharp eye pain. Waited until Optomotrist office opened and they got me in at 11:30. He send me to the ED and they did labs and put me on Prednisone on a Tuesday. The surgeon's office closed early Wednesday a.m. due a snow storm (this is January '24) had biopsy on Thursday a.m. and on Friday they are looking for an antibiotic which only the hospital pharmacy had as we were leaving the country at 2 a.m. Saturday a.m. Rheumatology kept in touch with me the 6 weeks we were gone. Had to go to the local hosital for lab tests. One week I was on 100 mg of Prednisone, nightmare. Tapered off Pred at end of August on put on Actemra IV once a month. I hear: you are pre-diabetic, you have CKD. So much muscle loss (155lb down to 125lb. I did not go blind and now you are on anti-inflammatories you should be safe from blindness. I bruise and get skin tears from the drugs. Last summer had hair shedding. My hair dresser said it felt like chemo hair. My hair has come in kinky-curly which is opposite my wavy hair. Have a bone density Monday and know I have bone loss from Pred and had L4-5 fracture. I also have TMJ and read we could have jaw fractures plus my spine hurts. Hang in there as I know how and what you are going through. I also have fibro and lichen planus

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Replies to "Dear mehow: I started out with head pain while lying down to sleep. One a.m. I..."

40 MG, omg! All docs say, no more than 1 week, then taper. Ck this, I had multiple infections, no cause, derm doc said time for Delvance. Infusion, 90 mins, 2 days latr, what relief. Not sure how it was indicated, but it had provided help with multiple issues. Regards, Jerky.