Prednisone withdrawal and Unlikely Additional Symptoms

@dswilson913 yes it is tempting. Fortunately I haven’t experienced any fatigue the whole time. I’m about to go down to 2 mg in a week, so hope I don’t experience that. I have to wonder if it’s because I’ve been on low carbs for years.

@vjm0223 Thank you for linking that article. It was very informative.

Thank you all for your comments. I am fortunate that due to a cancellation I will be able to see a rheumatologist on Monday, and then get a plan in place for an appropriate dosage of prednisone and a monitored tapering down.
So much great information shared here from people who have experienced it all.

@vjm0223 super helpful. Keeping this article for reference. Thanks

This was so helpful. Thanks for reposting. I had a pretty smooth experience from 40mg down to 3 on a monthly taper over 9 months. I was at 3mg when it hit and have begun the dreaded rollercoaster. It is the most challenging, crazy making part of PMR on this my second time around. At 83 it feels like “Really? Now? Will I outlive this?”

@brerabbit wow!!! So sorry you are going through this at 83. Yuck. Yes, it is a rollercoaster. I was gonna try from 5MG down to 2.5MG today. Sore from back in gym 1st week since 6 months. Will taper over weekend and skip gym so I can know if it is PMR pain coming back. Hang in there. Walk in nature;-)

I also experienced unusual pain after getting down to 1mg of Prednisone per day. For me it was pain in sternum and rib cage which my primary believes was costochondritis rather than PMR. I also had pain in hips and glutes which wasn’t unusual, but only on one side of my body which was odd. My inflammation numbers were also elevated so was moved back to 5mg/day by my rheumatologist. 30 days later most pain has resolved except for glute pain which has diminished. Hoping to taper down to 4mg at my next appointment.

@marciai I got down to 1mg. Stayed there for 8wks and decided to alternate with 0.5mg to eventually get off prednisone. Was so difficult and rheumatologist said stay on 1 mg. or PMR will flare up again. It did. I spent 8 days with so much back and hip flexor pain. Went back to just 1mg. Still no relief so have gone back to 2mg. the last two days and feel so much better. Plan is to work back down to 1mg after a few days and stay there for a time. Hope all goes well for you.

I’m on 2 mg and next week I’ll be on 1mg for 30 days. My problem has been shoulders and arms and it switches from right to left arm every so many days or right now it’s only in my right arm!!’ I fine this PMR is very weird!!!