It was a long 12 year journey but now PMR is being treated without prednisone. I started out with Prednisone when PMR was first diagnosed. After 12 years of Prednisone with many relapses, I have been off Prednisone for almost 5 years. Prednisone was coupled with various conventional DMARDs but I still had relapses.

I am now being treated without Prednisone. I took a multifaceted approach to get off Prednisone. I had to realize that not all pain was PMR even though Prednisone helped me cope with a wide variety of pain.

First I decided to have my knees replaced because knee pain was originally a sports injury in high school. I was told my knees had advanced osteoarthritis before the age of 30.

A more difficult problem was trigeminal neuralgia. That face pain had nothing to do with GCA even though Prednisone did a decent job controlling the pain. I gave up on tegretal, gabapentin and all those other medications for nerve pain. The neurologist was right all along because Prednisone wasn't the best solution either. The trigeminal neuralgia pain became incapacitating to the extent that I couldn't even speak while my face was being electrocuted for hours at a time. After a couple of emergency room visits, a sophisticated MRI scan was warranted. The MRI scan revealed what might be causing the trigeminal neuralgia pain. It wasn't completely clear what the problem was but a neurosurgeon went in to take a look and found the problem. The neurosurgeon said prednisone was probably helping the swelling and inflammation in the area near my brain stem. The neurosurgeon was able to stop the electricity to my face.

After surgery for trigeminal neuralgia, I had another setback. It was the lower back pain that I had felt hundreds of times. That pain was always relieved with Prednisone except this time it included neurological changes that were hard to ignore. Another MRI revealed the cause was severe spinal stenosis. The spine surgeon wanted to do emergency spine surgery except for the 60 mg of Prednisone I took to relieve the pain. I didn't think I would have survived a lumbar fusion after having knee replacements and a craniotomy for trigeminal neuralgia in the same year.

The surgeries I had allowed me to reduce my Prednisone dose substantially but only down to 10 mg. That was when I contemplated taking prednisone for the rest of my life. Fortunately, I became virtual friends with a person on the internet who had an adrenal crisis. She had no reason to help me except for saying she was in a coma for 6 months and was "sent back." She wanted to spare me her fate with an adrenal crisis after I told her how long I had taken Prednisone. She said I needed to preserve whatever adrenal function I had left.

I mentioned things about adrenal insufficiency to my rheumatologist who didn't take it too seriously at first. However, at a subsequent visit an option was presented to me as my best chance of ever getting off Prednisone. The option was Actemra (tocilizumab) for relapsing and refractory PMR. Within a couple of months, I was down to 3 mg but I was ordered to remain 3 mg when my cortisol level was too low. I was then diagnosed with prednisone induced adrenal insufficiency and referred to an endocrinologist.

An endocrinologist helped me overcome adrenal insufficiency. Within one year, I was off Prednisone except I subsequently had a flare of uveitis which necessitated 60 mg of Prednisone again. A different biologic was used to prevent uveitis flares while Actemra was stopped.

Uveitis was soon in remission again except that PMR relapsed. My rheumatologist said it would be impossible to adequately treat everything so I was asked what I wanted to do. I wanted to be off Prednisone so Actemra was restarted.

I have now been successfully treated with Actemra with no Prednisone for almost 5 years with no relapses of PMR or anything else. Sorry for such a long story.