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@pb50

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!!

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Replies to "Wowzer what a story!! My Rheumy gave me Colchicine once for some migrating joint pain. But..."

@bunnybear

There is definitely a "continuity of care" problem when people move or change doctors frequently. Sometimes it is because of too many doctors.

A "maintenance dose" of prednisone is used for adrenal insufficiency. An endocrinologist would prescribe a maintenance dose of prednisone when the adrenals aren't likely to recover.

I don't know how "permanent adrenal insufficiency" is determined when people are on long term prednisone for rheumatology reasons. I think rheumatologists "give up" and stop trying to taper people off Prednisone for a variety of reasons. Noncompliance might be one reason. That is NOT the reason in bunnybear's case ... I think you got lost in the system because you moved.

When people don't follow instructions given to them by their rheumatologist and listen to people on the internet instead, a rheumatologist might discharge people. They leave people on 5 mg of prednisone for life. I was worried this might happen to me when I couldn't taper off prednisone. I made sure my rheumatologist knew what I was doing when I was treated with prednisone. It wasn't my fault that I couldn't taper off. I didn't blame my rheumatologist for anything.

I don't know too much about "pseudo gout." Attacks are treated with colchicine just like gout.
I was told to take colchicine only if I had a gout attack --- sudden, severe pain in one or more joints caused by abnormally high levels of a substance called uric acid in the blood. Colchicine is used to relieve the pain of gout attacks when they occur but not all the time I believe.

My blood uric acid level is high. I have kidney stones which are mostly composed of uric acid crystals. I passed a moderately large kidney stone. It made the top ten list of painful conditions comparable to child birth. I never want to give birth to another kidney stone. Allopurinol was used to decrease my uric acid level. Potassium citrate was used to help dissolve and prevent uric acid kidney stones. from getting larger.

My rheumatologist prescribed allopurinol and colchicine when there was concern about the "possibility of gout." I didn't think gout was ever a problem but multiple kidney stones in both kidneys were concerning. I never took colchicine because I never had a gout attack.

The treatment overall worked because my uric acid levels decreased and my kidney stones got smaller. Unfortunately, my rheumatolgist discontinued the treatment when they were convinced that I didn't have gout. The reason why my high uric acid level wasn't in the realm of my rheumatologist.

I asked my urologist about my uric acid level in my blood when my kidney stones got bigger. My urologist wouldn't prescribe allopurinol unless the uric acid was in my urine which it wasn't. My urologist suggested I tell my primary care doctor except I forgot about my uric acid level because I'm not symptomatic.

I recently remembered to tell my primary care doctor about my enlarging kidney stones. He was unaware of my high uric acid level so it was rechecked. My uric acid level is high again. Now I'm waiting to restart allopurinol. I asked why my uric acid level is high. The best guess was "metabolic syndrome" caused by long term prednisone use.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9772659/