Does adrenal insufficiency with unregulated inflammation cause flares?

Actemra

Thanks for sharing your story about this very important aspect of PMR and prednisone. Adrenal insufficiency is a mysterious topic to me. Please let us know the biological you’re taking, how long you’ve been on it, the dosage and the form (is it an injection or an oral). Also, did you experience any significant side effects? Thanks and hope you have gone into remission.

My first dose of Actemra was January 1st, 2019. I started with injections every 2 weeks. I was taking 10 mg of prednisone which was the lowest dose I was on during 12 years of prednisone treatment for PMR. My rheumatoogist didn't want me to take prednisone for the rest of my life.

Secondary adrenal insufficiency is a side effect of long term prednisone use. My primary symptom was overwhelming fatigue but adrenal insufficiency can also cause pain that mimics PMR.

From 10 mg of prednisone I was able to reduce my prednisone dose to 3 mg. I reduced by 1 mg per month for the first 3 months after Actemra was started. I felt well so after that I reduced prednisone by 1 mg per week until I reach 3 mg.

My rheumatologist wanted me to stay on 3 mg when my a.m. cortisol level was low. The lab test confirmed secondary adrenal insufficiency from long term prednisone use. I had to stay on 3 mg of prednisone until I could be seen by an endocrinologist. I was on 3 mg of prednisone for about 6 months until my cortisol level improved. That was when my endocrinologist said my cortisol level was adequate and it might be safe to discontinue prednisone.

I had PMR relapses when Actemra was stopped. I have taken Actemra almost 5 years now except for a couple of interruptions. My dose of Actemra has changed from injections every 2 weeks to injections weekly. This past year I have done monthly IV infusions of Actemra.

My side effects from Actemra are minimal if any. I had many side effect from long term prednisone use that are now improving. I have discontinued five medications that I was taking to treat prednisone side effects.

My rheumatologist thinks PMR might be in remission. Currently there is no plan to stop the monthly Actemra infusions because of the risk of other autoimmune conditions recurring. Actemra was used to treat PMR only but seems to help my other conditions too.

Thanks so much for this thorough and thoughtful response. It’s very helpful to me and I’m sure to many other members of this group. I hope the Actemra continues to work for you and you are truly in remission and stay there.

The following link talks about a research study with Actemra (tocilizumab) for the treatment of PMR. So far, Actemra still isn't FDA approved for PMR. However, Actemra is FDA approved for the treatment of GCA.

This link might work better:

I don't have GCA so my rheumatogist submitted an authorization request and got Actemra approved for me. The approval authorized my rheumatologist to treat PMR with Actemra under the same guidelines used for GCA.

There is now another biologic that is approved for PMR. This biologic is called Kevzara (sarilumab).

Kevzara and Actemra are 2 different biologics but are in the same classification. The mechanism of action is basically the same.

Thanks for this additional information. It is very helpful. You have made a very meaningful contribution to the support
group.

I don't wish to suggest that Actemra is a perfect solution for PMR/GCA. My rheumatologist didn't make any guarantees that Actemra would work. He just wanted me to try Actemra because he didn't want me to take prednisone for the rest of my life. I'm happy that I tried Actemra.

I think corticosteroid dependence and adrenal insufficiency due to a long term prednisone use was a significant part of my problem. Those symptoms took a long time to improve after I was able to taper off prednisone.

I don't know if Actemra will ever be discontinued. However, biologics in general have a tendency to stop working for the reason that is explained in following link.