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@bunnybear

I was kept on 5 mg of prednisone for about 12 years as a maintenance dose. I had started at 10 mg at peak PMR with low lab indicators but classic symptoms. Then I moved to a new state and new Rheumatologist immediately started to reduce my prednisone and felt I shouldn’t be on it at all (I think he was right). But as soon as I got to 3 mg I started getting deposits of calcium (as I understood it) in both hands. Dr. called it pseudo gout and prescribed Colchicine. That helped a little but did not reverse the deposits that have deformed the areas below my thumb and above my wrists on both hands. Then b/c of a conflict with an essential new BP medication, I chose to discontinue the colchicine myself. This caused extreme pain (the doctor couldn’t even touch my right index finger and thumb without me crying out. So she scheduled me for xrays and I was to come back the next day for possible steroid shots in the right hand. I never had any confidence in Tylenol helping with anything at all, but in desperation I took two 650 mg tabs and guess what? All the pain and most of the swelling disappeared within hours! I still have the thumb/wrist deformities but no pain. Only bad thing is I am stuck at 3mg prednisone and can’t get lower without lots of pain and swelling. I moved again now and we’ll see what new Rheumatologist has to say.

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Replies to "I was kept on 5 mg of prednisone for about 12 years as a maintenance dose...."

Wowzer what a story!! My Rheumy gave me Colchicine once for some migrating joint pain. But in spite of scary drugs I’ve been on over the years, this one scared me and I took myself off. So you have my respect!

The tylenol story is amazing! Did your Doc have a theory?? There is a guy in our community here @dadcue who has PMR but has had or does have a host of auto immune conditions such as Reactive Arthritis and Uveitis and has a great layman's explanation of that point you reach and cant go lower, and how he managed around it. If nothing else i want him to read your unusual experience. He may have some useful insight.
What city have you moved to? We collectively represent deep knowledge of the good docs in almost any city. We can’t all access a premier facility like Mayo, but at a community level, we know a lot of the good Rheumies. I can recommend in Manhattan, Providence, RI, Chattanooga, TN, and Greensboro/Burlington, NC. And I’m one person.

Wishing you well!!

I would consider seeing an endocrinologist since your picking a new Dr. I would google as much as you can about Adrenal insufficiency.