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What you have experienced is very common. I think PMR is like other autoimmune conditions because there are 3 different scenarios.
1) PMR can be a single occurrence. After PMR is treated, it doesn't happen again.
2) PMR can have a recurring pattern characterized by remission followed by recurring flares. This recurring pattern can occur during the prednisone taper but also it can be characterized by relapses following a period of remission after tapering off Prednisone.
3) PMR can be a chronic condition, stays active and never goes into remission.
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I had multiple relapses while I tapered off Prednisone. It wasn't because I tapered Prednisone too quickly. Relapsing PMR warrants consideration of biologic treatments that have been shown to provide "sustained remission" for many patients. After being on Prednisone for 12 years for relapsing PMR -- I have now been off Prednisone for 5 years. I haven't had any relapses thanks to a biologic called Actemra (tocilizumab). Despite what some people advise -- it isn't good to take Prednisone "long term" for years.
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@dadcue Mike, the potential side affects of Actemra concern me. There is some concern in my case that I may have GCA and I have authorization for IV infusions, so I’ll be making a decision in the next couple of weeks.
I’ve been symptom free and started tapering down Prednisone from 40 mg to 35 mg. I’m tired, nauseous and sometimes slight headache. It seems that can just be part of the withdrawal.
I take Boniva and hope that helps my osteoporosis from worsening. I also take Eliquis for afíb. Since I’m new to this I have a lot to learn. I suspect my Rheumo will be pushing the Actemra because he says it’s hard to tweak out that diagnosis. I declined the bx. because I had already been on Prednisine for several weeks and I understand that you can be false negative.