I was diagnosed and started 20mg pred on June 27...saw rheumatologist July 20 and started to cut down to 15mg...I was too ambitious a week later and cut again to 13 and 4 days later woke up with horrible pain in neck and shoulder. Went back to 15 and saw Dr. again on Aug. 9 who said "back to 20 for 6 weeks."
I've been doing OK but woke this morning to sore jaw and stiff neck...eyes have been somewhat wet and sometimes blurry. Should I see my opthamologist? (I have an appt. with my rheumatologist on Sept. 20. next week.)
Thanks for your advice...I have learned so much on this site.
Written by
izzyart
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What did you do yesterday? Was it too much physically? For you? At this stage? I don’t know whether since you have been on this forum you have seen much about ‘pacing’, but it is really important. If you do too much you may be even more tired, or get some symptoms returning. Might this be what is happening to you?
Whatever you do, or whatever the rheumatologist says, you should see your ophthalmologist anyway. Mine found my ocular pressure was increased so that had to be monitored for a while in case I needed drops. No symptoms for that, of course. And he was also able to give me a thorough examination to check for signs of GCA, thankfully none. This particular individual was much better informed about pred and its side effects than my GP, too, so it was a very worthwhile visit.
Hope you ound out what was going on. I have TMD/TMJ jaw pain and stiff neck, I don't know if it's to do with PMR or if it's another manifestation of autoimmune disease. Rheumatologist doesn't know either, he says I could have one or more of hundreds of AI illnesses. Mine responds to steroids, and as I've recently discovered, avoiding sugar.
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