Are painful swollen hands and fingers a PMR flare?

I get it. Don’t we all wonder what our baseline pain level is? Or, what if we eliminated a med?

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.

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!!

@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.

What did you think about the 1300 mg of Tylenol eliminating pain and swelling ?

As to “pseudo gout” when my Rheumy prescribed it, he said “rule out gout” but Pharmacist all but backed me up against a wall with “are you aware how dangerous this drug is”? He scared me and I took it a few days and stopped.

But what i wanted you to share with @bunnybear is the explanation you gave of how you have to give your body a chance to catch up and produce cortisol when you reduce the cortisol being provided by Prednisone. I’m sure I butchered that explanation.

Anyway - good to hear from you.

Giving her adrenals a chance to produce cortisol depends on why she was put on a "maintenance dose of prednisone." An endocrinologist would do this if it was likely that her adrenals won't restart or won't produce enough cortisol again. If she has "permanent adrenal insufficiency" taking a maintenance dose of a corticosteroid is how that is treated.

She might not need Prednisone for PMR anymore. She might still need prednisone if she has adrenal insufficiency. I'm afraid rheumatologists "give up" sometimes when people can't taper off prednisone. It seems strange to me but people are willing to take Prednisone for the rest of their life If it relieves their symptoms of adrenal insufficiency --- their quality of life might be better. I don't know if that is the best outcome overall.

I had to stay on 3 mg without tapering for 6 months before my adrenals increased their production of cortisol. It might take someone else less time or more time. There is no way to predict how long it might take. One year is frequently the time frame that is given. If it doesn't happen in a year, it might be considered permanent ... I don't know.

My quality of life got better when I got off Prednisone. Fortunately, my adrenals weren't permanently suppressed.

Tylenol doesn't treat inflammation and swelling. It is not an NSAID. Tylenol can ease mild-to-moderate pain and bring down a fever. Unlike NSAIDs, it does not treat inflammation and swelling. Probably just a coincidence that the swelling went away but tylenol might have relieved the pain. Whatever happened - it was a good thing.

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

💡You know, that is a great idea! I’ve also taken levothyroxine ever since I had thyroiditis in the 1990’s and it wouldn’t hurt for a review of that either. Thanks!

I learned years ago in nursing school that Tylenol was not anti inflammatory but then I read somewhere a couple of years ago that new research showed it did have anti inflammatory properties. All I can say is, at the high dose on the “Tylenol for Arthritis” bottle it most definitely did. Nothing else could explain that result at the time. Oh, and I now live in Plano, TX near Dallas. I have decided to see an Endocrinologist to evaluate both my adrenal situation and my long term use of levothyroxine. My daughter saw one she really felt gave her great information and I will make an appointment with him. It will probably take months to get in though.

Interesting, you're probably right about the Tylenol. Tylenol is what we call Panadol/Paracetamol in Australia, same thing. It reduced inflammation and edema in rats in a 2015 experiment.

"Evaluating the potential Anti-edema effect of Paracetamol on Sprague-Dawley rats."
"The result showed that there was about 88.46% edema inhibition as compared to the control... a significant decrease in edema and inflammation as well as less tissue congestion in the paracetamol group as compared to the control. From this study, paracetomol has shown a promising result in reducing edema and also exhibited some level of ant-inflammatory properties."
https://www.researchgate.net/publication/284003799_Evaluating_the_potential_Anti-edema_effect_of_Paracetamol_on_Sprague-Dawley_rats