How are you doing with Actemra? I think you were lucky to start Actemra as quickly as you did. I wish I could have tried Actemra much sooner.

Twelve years on prednisone with all the inherent risks and side effects of prednisone was a very long time. I'm not so sure managing the symptoms of PMR with long term prednisone and waiting for PMR to "burn itself out" is a good approach to the problem anymore.

When adrenal suppression starts to happen, it becomes more difficult to taper off prednisone. The slow taper that people are told to do when starting out on prednisone is because of the side effect of adrenal insufficiency. I believe when there isn't enough cortisol to regulate inflammation then the risk of a relapse increases. The symptoms of adrenal insufficiency also increase. Both conditions mimic each other.

I don't know how many of my symptoms were from PMR and how many symptoms were caused by adrenal insufficiency. I think it was a combination of both.

I have stopped Actema twice after I tapered off prednisone. My rheumatologist didn't exactly want to stop Actemra. The supply of Actemra during covid was limited and I couldn't get my prescription refilled. My rheumatologist said I could take prednisone again if I absolutely needed to. I held out as long as I could but I needed 15 mg again after about 3 months. I wouldn't call it a flare or at least not a sudden increase in symptoms. It was more of a gradually increase in pain as my inflammation markers crept higher.

I was only on 15 mg of prednisone again for about 2 months before Actemra was available again. I tapered down from 15 mg back to zero in less than 2 months that time.

I'm not sure my symptoms were PMR symptoms as much as my adrenals were having difficulty regulating inflammation. In any case, I felt I needed prednisone again. I joked with my rheumatologist that I was a prednisone junkie and I needed a cortisol fix.

I didn't realize how much adrenal insufficiency factored into the equation until Actemra allowed me to taper down to low dose prednisone. I kept telling myself that Actemra was controlling my PMR symptoms and I didn't need prednisone anymore. I had a hard time convincing myself but eventually I didn't need prednisone anymore.

Now I need to figure out how to wean myself off Actemra. My rheumatologist says I may have a problem with "immune system memory." He says the immune system develops a memory for things that are foreign to the body. The same thing happens with autoimmune disorders. The immune system can't distinguish my own tissues (good stuff) from the bad stuff. Unfortunately the immune system acquires a memory for the good stuff and may have develop a "long term memory" for attacking me or the good stuff. My rheumatologist says it isn't likely that my immune system will forget anytime soon what it has been attacking for so many years.

Maybe if remission could have been achieved sooner, my immune system wouldn't have a long term memory for attacking me. I might have a better chance for a long term remission.

Does this make sense?? I'm still trying to wrap my head around some of the things my rheumatologist says. I don't think there is anyway to knowing what will happen in regards to having a relapse. I'm more in a try it and see mode.