Flare vs Withdrawal vs Other Issues

You are not alone in not knowing if it is a flare vs. other sources of pain and discomfort. When you toss in symptoms of prednisone withdrawal and adrenal insufficiency it becomes impossible to separate one source of pain from another possibility. The difficulty is that prednisone relieves almost any pain that is caused by inflammation. Unfortunately, inflammation is a process that occurs naturally for many reasons. Even stress, both physical and emotional, in the absence of any injury or infection triggers an inflammatory process.

I like how people say you should "listen to your body" and take prednisone when you have pain. The problem I had was that my body would have pain but failed to inform me of the reason for the pain. When I took prednisone it usually relieved the pain so I assumed the pain was caused by PMR. Unfortunately, relying solely on pain levels can be misleading, as other conditions can mimic PMR pain and be relieved by prednisone.

It wasn't until I was able to control my PMR pain with a biologic medication that I could begin to make sense of what was PMR and what pain was caused by something else. The added bonus was that the biologic didn't suppress my adrenal function. That allowed my cortisol level to improve. Cortisol is the hormone that the body produces naturally. One of the main functions of cortisol is to regulate my inflammation so I didn't need to take prednisone anymore. Prednisone is more like taking a sledge hammer to inflammation because it is roughly 4 times more potent than cortisol.
https://www.healthdirect.gov.au/the-role-of-cortisol-in-the-body
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Biologics work differently than prednisone. The biologic I took acted more like a "surgical strike" that targeted a specific inflammatory protein called IL-6, rather than the broad, systemic suppression of inflammation caused by prednisone. Research has shown that excess IL-6 levels are implicated as the primary driver of PMR inflammation.
https://www.pmrandil6.com/il-6-and-pmr/

Hi @pah17, I think @dadcue gave you some wise counsel so I won’t comment on that but just had to chime. I am so sorry to hear about your fall, I have had a few of those myself and strongly encourage you to get your knees checked out. Hopefully rest is all that is needed. I am still not traveling much due to pain so I’m super impressed that you managed all of that and planned a normal taper! When I do have a scheduled change in my routine, my rheumatologist has advised me to avoid tapering. I just continue with the dose I am taking until my schedule settles before I attempt another taper. This has helped me to know if increased pain is because of all the trip movement or if it really could be the taper. I hope that is helpful and prayers for pain free knees! ❤️

@sandiw77 I appreciate your chiming in. It's very helpful on several levels.

@dadcue You are a true fount of knowledge. Thank you.

I get your concern with flying. I’m tapering down and am now at 4 mg with Rinvoq. Last month I was on a flight and I started a spiral that I can only describe as a panic attack at 35,000 feet. I started to dwell on every breath. Are they getting harder? Why is my stomach bubbling? Is that a pain I feel in my head? And so on. I worked myself up to what I thought was a heart attack. We landed and went straight to Urgent Care. No heart attack. I shared this with my rhummy and she ordered an MRI, CT scan of my gut and my cardio guy put me on a 10 day heart monitor. Thankfully all tests were negative! It was all in my head. My Rhummy prescribed Zanax. I’m currently in the terminal for a two hour flight with my Zanax tucked into my pocket. Just in case. I’m telling myself there is nothing wrong with me. Out of what is usually expected with GCA. I’ve loved flying for my 69 years but this disease has changed everything. I’m so glad I did all those tests. Now its mind over matter. I’m a big boy and I can do this!

Hey @graydude, I have had travel anxiety and have wondered where that came from. Mine started while I was still working full time and traveling several times per month. You would think that would lessen the anxiety but for some reason it increased. Take whatever you need to manage!! Please share how Rinvoq has worked for pain. I am currently on Actemra and 8 mg of Prednisone but am having crazy hip and low back pain lately. I’m likely getting a steroid injection to try to deal with the degenerative disc issues in my back but my rheumatologist asked me to consider Rinvoq. I’d love to hear your thoughts!

@graydude

I confess to taking a higher dose of prednisone for a flight to Europe once ... okay ... more than once! The trip was for a special occasion and I was dreading how stiff and sore I would get during the flight and after I arrived in Europe. I told someone about my fear who had experience with an adrenal crisis. I might have exaggerated the problem because I said that someone would have to carry me off the plane because I would be "stiff as a board." I only meant from PMR not because of an adrenal crisis.

I felt so good during the flight to Europe that I continued with the higher dose for the entire time I was in Europe. At least I felt great the whole time until I decreased my dose again after I got home.

This wasn't the only time I took more Prednisone than I may have needed. The person who had an adrenal crisis said it was easy for her to understand. She told me when you have adrenal insufficiency you need to be proactive and increase prednisone whenever stress is anticipated. She went on and explained that a fight to Europe was "bad stress" while the special occasion was "good stress" but the entire trip was stressful.

Update. Landed with no issues! Didn’t need the zanax!

@sandiw77 my pain is very low now on 4 mg and Rinvoq. I still get daily headaches but not skull crunchers. No other issues to deal with and am happy with my progress my goal is to be off Prednisone by August.

That is a great report! My pain is not great though I just found out that I have a pinched nerve in my low back. I have had shingles (3 times) even with the vaccine and found out recently that I also have had a mild stroke. Not sure when it occurred but my blood pressure went up on Prednisone before GCA was diagnosed. I do know that the stroke was not caused by GCA according to the Neurologist. All that to say that I am not sure if my risk factors still make me a good candidate for Rinvoq but have to stop Actemra due to skin reactions that they consider serious. Praying for relief! ❤️