Non-responsive to prednisone?

I am in the US, and recently diagnosed with PMR. It took about 3 months as I was first MRIed up and down for possible orthopedic problems as pain was initially just in inner thigh, then lower back. But ultimately it spread to shoulders, neck, and jaw. After one night where it felt like every joint in body was under attack, my GP prescribed diclofenac plus a pain reliever. I began to improve quickly and was 85% better in a week. But I knew there was still some undiagnosed problem, and finally got to the Rheumatology dept of University of Pennsylvania, where my symptoms, age, and ESR of over 70 suggested PMR.

So I was put on 20mg of prednisone. Within two days, many symptoms began to worsen. The doctor said I could take diclofenac if needed, but noted that it is inferior to the prednisone for inflammation. After 5 days, chronic pain reached the point that I took a diclofenac (as we as the prednisone). I began to feel better after a few hours, and after another the next day, was back to about 85%. It is now the third day since taking them, and I am sliding backwards - lots of soreness in thighs and lower back, shoulders and neck starting to stiffen.

So I am concerned that I am somehow non-responsive to the prednisone. Anyone have similar experience?

[HeronNS]

It is possible that the PMR diagnosis is incorrect. Also I think, rarely, people are allergic or otherwise sensitive to prednisone and may need a different steroid or a different form of prednisone. There are people on the forum who have needed to try more than one form of pred so hopefully you will hear from one of them soon.

How certain was your doctor about the PMR diagnosis, because a rapid (within hours or days) response (alleviation of symptoms) to a moderate dose of prednisone is one of the main diagnostic tools, and you haven't had that.

[Hidden in reply to HeronNS]

Thx. I am asking him. He was encouraged by the drop in my ESR. He has as of today also put me on methotrexate.

When my problems started, my orthopedist thought it was a disk problem, and as I was going a trip gave me a 10 day prednisone pack, which helped. But when I worsened two months later, another 10 pack did not help.

[PMRpro Ambassador]

My immediate suspicion is that whatever you have - it isn't PMR. And that is perfectly possible. It is very unusual for an NSAID to make that much difference in patients with the PMR we discuss here.

PMR is the name given to symptoms of some underlying cause. There are several and it is possible your GP needs to do a bit more research and investigation! There are people who don't respond to pred - but they are very rare.

[kulina]

I agree, with HeronNS and PMRpro. Diclofenac didn't help me all but on 20 mg Prednisone I felt better within a week. Seems to me, more research is necessary, even if you have to get a second opinion. Good luck, I hope you feel better soon.

[Hidden in reply to kulina]

Thanks. My rheumatologist is sticking with PMR for now, though he acknowledges such diagnosis is subject to review. If not resolved within a couple of weeks, I have an appt set up at the Mayo Clinic for that second opinion.

[kulina in reply to Hidden]

I'm more comfortable going to a medical school. I have a fellow and because she's so new she doesn't miss anything and she gets reviewed by the head of the department so I feel very comfortable with my two doctors. My first rheumy, the local one, misdiagnosed me and he didn't even want to listen to what I had to say. I believe in second opinions but it also sounds like you're in good hands.

[Hidden in reply to kulina]

Yes, I think the academic environment can offer more solutions. I did get the methotrexate quickly because he recognizes that something unusual is going on. We have also discussed trying to use tocilizumab further down the road if I don't improve quickly enough.