The curious thing about the "dead slow nearly stop" (DSNS) tapering method is that the person who identifies as the PMR "pro" can't seem to taper off prednisolone either. The idea of being a "pro" comes from having PMR for more than 13 years and still needing prednisolone in doses in excess of 10 mg daily.

I'm all for any method of tapering that works. I tried DSNS because I was willing to try almost anything to get off prednisone. The possibility of adrenal insufficiency seemed very likely to me because I took prednisone myself for more than 12 years for PMR. The pro advised me to take prednisone for the rest of my life because there wasn't any alternative to prednisone for PMR.

When my rheumatologist wanted me to give Actemra a try, it was called nothing more than an "expensive steroid sparer" by the pro. Actemra would subject me to "serious" side effects in addition to the "manageable" side effects of prednisone. We had a spat about me doing Actemra injections while I was tapering down my prednisone dose by 1 mg per week. About all I said was that Actemra "seems to be working for me."

It was my rheumatologist who wanted me to hold at 3 mg to get my adrenal function evaluated by an endocrinologist. On 3 mg of prednisone, I was having adrenal insufficiency symptoms which were very "PMR like." The endocrinologist advised me to remain on 3 mg for an "extended period of time" but didn't say how long.

About 4 months later, my a.m. cortisol level was called "adequate" by the endocrinologist. We had a long discussion about "what could happen" if I stopped prednisone but my endocrinologist said she didn't know "what would happen." My endocrinologist and I agreed that it "might be safe" to go from 3 mg to zero in one step with the understanding that I should take prednisone again "if anything happened."

I did some trial runs of 3 mg -2 mg -1 mg -zero over 3 to 5 days before going back to 3 mg again just to see what might happen. When I finally decided to stay at zero something did happen (uveitis) and my ophthalmologist put me back on 60 mg of prednisone.

After some consultations with all my doctors, they came up with some alternative plans to get me off prednisone. Ultimately, my rheumatologist said it would be impossible to "adequately treat" everything that is going on. My rheumatologist asked me point blank what I wanted to do because he didn't want me to take prednisone for the rest of my life. The decision was left for me to decide. I chose to give Actemra a second chance because I was stuck on 15mg of prednisone again.

When Actemra was restarted, I went from 15 mg to zero in about 3 months the second time it was tried. Except for when Actemra has been stopped, I have stayed off prednisone for 3 years. I haven't had any serious side effects from Actemra. My adrenal function has improved and is no longer a concern that my endocrinologist has.

I just want to share my story. I hope DSNS works for whoever wishes to try it.