A Detailed History of my PMR Journey

[Doclew44]

This post is a detailed history of my PMR experience. It may be of interest to some newly diagnosed PMR patients and probably will be much too much detailed for others.

I am 75-year-old fit male California psychologist, working full-time, diagnosed with PMR in July 2017. For five months before that, I had been suffering increasing pain in my hips, then shoulders and back. I had almost completely stopped exercising and began seriously considering closing my practice. My doctor’s original assumption was that my symptoms were due to spinal stenosis, but when I recognized my symptoms on the Internet and suggested PMR, she ordered ESR and CRP tests and started me on 20 mg of prednisone. Almost immediately, my symptoms disappeared, and although my ESR and CRP tests were only moderately elevated, the alleviation of my symptoms confirmed the diagnosis. I also had some headaches at the time, but they have slowly resolved, and I no longer have them.

I did one month at 20 mg, one month at 15 mg, then a month or 10 mg, 9, 8, 7. At 7 mg, I began to have unacceptable symptoms return, and I went back up to 10 mg where are stayed for several months. Then I began to go down again, cutting my 1 mg prednisone in half to go down .5 mg per month. Had trouble again at 8 mg went back up to 8.5 then continued down by half milligram a month till I got to 5.5, went back up to 6 milligrams for a month. I have now gotten down to 4.5 mg. My doctor also prescribed an injection of Prolia (denosumab) every six months to avoid osteoporosis.

Along the way, I developed Achilles tendinitis from an injury while exercising. I was taking 10 mg prednisone at the time and I presume the prednisone weakened my tendon. I was relatively limited in my ability to walk or hike for ten months until a podiatrist treated me with something called shockwave therapy. In addition to a weakened Achilles tendon, I also had weight gain and GERD as side effects from the prednisone. I dealt with the weight gain with intermittent fasting and the GERD with lansoprazole.

I am fortunate that I have not suffered from fatigue and at present, I really only have mild pain in my hips. I am back to hiking and working out. I am hopeful that I can continue lowering my dose of prednisone to zero. But I have learned from this website and from experience to go slowly and return to a slightly higher dose if PMR symptoms return. This website has been a godsend for me and I am enormously grateful.

[Hidden]

Thanks for your comprehensive description of your journey so far Doc; you’ve done really well & now when your almost there it seems so much slower. I’ve been down to 5mg but currently back at 12.5mg & the only way down is slowly, slowly.......

Keep us updated as to how you’re getting on & remember it’s not aiming to get to Zero but to as low a dose that keeps your symptoms at bay.

Kind Regards

MrsN

[Blearyeyed]

Thank you so much for sharing your story with us and I hope that you keep finding the information you need when you visit the forum.

I'm sure we would all enjoy reading your updates as you carry on with your treatment too , and obviously we are all hear to support you if you need us along the way.

Take care , Bee

[SheffieldJane]

Thanks for posting. It will be useful to new sufferers to see the whole picture. I recognise your journey. I had additional difficulty with my Adrenal function from about 7 mgs. This was confirmed by a Synacthen Test at around 5 mgs. It corrected itself spontaneously at 4.5mgs. This leads me to believe that the test is more relevant at below 3 mgs. I still have to observe the sick day rules ie double my dose if I get an infection or experience extreme stress. It is a consideration at low doses.

[Noosat]

Thanks so much for the post. I am down to 5mg as of yesterday, from 20mg last December. It may still be a little fast. If so, I am prepared to have to go up again. For me the hardest part is being patient, also the terrible afternoon fatigue. :).

[Daylily2000]

Thank you for sharing this!