@csimmonds If only the doctors could walk a mile in our PMR shoes, they might not be so dismissive. Especially with a disease that isn’t known for a clearly defined path. Is there any chance of trying a different rheumatologist where you live? At the least you deserve a supportive doctor while going through this. I think you should be proud of the fact that you’re down to 1 mg after a year. That is encouraging! We are always told to listen to our doctors. That was my hardest adjustment with this diagnosis. Suddenly I’m in charge of deciding how much prednisone I should take. Who am I? I didn’t go to medical school. But it goes back to the doctors not knowing what we’re feeling. We have to be our own best advocate. We have to ask questions, do our homework, and learn as much as we can about what we’re dealing with. It’s unnerving to play around with medication dosing but have you considered splitting your dose to half in the morning and half at night daily to help with the morning pain? And remember your adrenal glands are trying to restart, so some of your discomfort could be related to that. If it were me, I would make small adjustments and allow them a few weeks to take affect and see where I’m at. And yes, as a fellow gardener, I question what happened to my body and why I hurt so much now. I think it’s a combination of our muscles not being used like they were a year ago, and the disease itself. Fatigue is much more prevalent than it was before. My friend, a year into PMR , felt like she would never get off of the prednisone.
After a year and five months, she did it! I looked at her as my example and try to remain positive that I will beat this sooner than later. I encourage you to do the same with a positive attitude as much as possible. While listening to everyone’s stories can be helpful. We have to remember we’re all different physically and age wise, so we can’t always compare ourselves to everybody. We are each on our own journey. You’re so close, be strong and patient. People do beat this and have positive outcomes. Why not you too? Best wishes to you, and happy future pain free gardening!

@csimmonds
When I was first diagnosed with PMR I saw a rheumatologist who told me I would be doing really well if I was properly better in two years. He said not to become too discouraged if I had to be up and down with the prednisone dose as this was common, especially once you got to a lower dose. I am on my third attempt to continue reducing the dose below 5mg, but am going very slowly. I stayed on 4.5mg for two months and am now alternating 4.5/4mg for a month before I will drop to 4mg. My GP is wonderful and says I am now the expert with the medication. Everyone is different but I’m finding this is working for me. The other advice I’ve been given is to pace myself and balance activity and rest. That’s hard sometimes but for me I know that is crucial to my progress. For the first time in over three years my CRP is in the normal range. I’m sure that eating a mostly Mediterranean diet has also helped me.