Relapse

The strategy of waiting 6 months until my cortisol level to improve wasn't exactly a strategy. My endocrinologist actually said that I needed to stay on 3 mg of Prednisone for "as long as it takes" for my cortisol level to improve. She didn't know how long it would take. She said my cortisol level may never improve since I took Prednisone for 12+ years. She said my adrenal function might be permanently suppressed.

When my cortisol level improved, it was only called "adequate" under the circumstances of that day. My endocrinologist said I could stop Prednisone but she couldn't predict whether my cortisol level would be adequate for future days. That was why my instructions were to take prednisone again "for any reason if I felt the need." Some of the reasons that were given was a car wreck or things of that nature that are very stressful.

A PMR flare wasn't one of the reasons that was given. I had faith that Actemra was controlling PMR so I didn't anticipate a PMR flare. However, I never would have anticipated what happened after I stopped Prednisone the first time.

When I actually went to zero prednisone things were going well until something bad happened. I needed Prednisone again because my ophthalmologist told me to take 60 mg because of a flare of uveitis. I was still on Actemra but my ophthalmologist said Actemra probably wouldn't work for uveitis. Actemra not working for uveitis is a misconception. Actemra is not a first-line treatment for uveitis but is often used "off-label" for this condition. In any case, my opthalmologist conferred with my rheumatologist and they both agreed that I should stop Actemra because they wanted me to try Humira instead.

Unfortunately, Humira isn't "first line treatment" for PMR. The uveitis flare went back into remission when I took Humira and 60 mg of Prednisone. When I attempted to taper off Prednisone again, I could only taper to 15 mg and got stuck because all the pain returned.

My rheumatologist gave me the bad news and said that it would be impossible to treat all of my autoimmune conditions with a single biologic. Since I could not take both Humira and Actemra, I needed to pick which biologic worked the best for me. I chose Actemra. I wanted to have the pain control more than taking Humira to prevent future flares of uveitis.

My opthalmologist was adamant about me being on Humira to prevent uveitis flares because uveitis can cause vision loss if left untreated. After Actemra was restarted, I tapered my Prednisone dose down to 3 mg again in just a few weeks. My endocrinologist rechecked my cortisol level and it was still "adequate" so the decision to stop Prednisone again was made with the understanding that I might need Prednisone again in the future.

I needed Prednisone again one other time but that was for another condition that wasn't autoimmune related. A synovial cyst formed on my lumbar spine when Actemra was unavailable during the Covid epidemic. I was off Actemra for 6 months before Actemra supplies improved. After Actemra was restarted the synovial cyst was reabsorbed.

Restarting Actemra likely helped reabsorb the synovial cyst by reducing the underlying inflammation. Otherwise I was facing a major back surgery to fuse my lumbar spine. I have remained on a monthly Actemra infusion ever since. I haven't had a flare of anything for nearly 5 years as long as I do a monthly Actemra infusion.

@gmdb

Methotrexate toxicity is probably stressful. They say cortisol has an effect on every organ and the cells of every tissue in the body. Cortisol's and prednisone's widespread reach is due to their interaction with glucocorticoid receptors, which are present in a vast array of cells throughout the body.

Maybe the reaction you had from methotrexate toxicity was caused by adrenal insufficiency. An impending adrenal crisis is a medical emergency. I went to the emergency room several times and said I didn't know what was wrong but I was having a "pain crisis."

During the latter stages of being treated with Prednisone, I used to joke with my rheumatologist about why I needed more Prednisone. Whenever anything went wrong, whether it be PMR or something else, I said that I needed a "cortisol fix." I took more Prednisone simply because my adrenals were not producing enough cortisol.