Home stretch: how do you know you have arrived?

Hi pdxmac@pdxmac, would like to know how you felt about tyenne? I have had one infusion so far, next one April 14th, four weeks apart. so far just ankle swelling. I am on 20 mg prednisone right now. waiting for rheumy to give me new lower dose. I have been on prednisone about three years. Good your getting a second opinion Best of luck to you. Ellen

Hi Ellen: I've been very lucky. The only side effect has been morning dry mouth and a crusty nose (I learned in another post that one of the inactive ingredients in Tyenne is histamine - so that's probably why). Some days are better than others on that score. Don't be surprised if it is several months before you notice anything. In my case once it kicked in I could taper very quickly and with no side effects. That was before I got down to the 2.5 - 3 mg range in December. Good luck!

@pdxmac, My first time with polymyalgia rheumatica took 3 and half years to taper off with the last six months going back and forth between 1 mg and 1/2 mg prednisone until I was finally able to stop. I did have some pain but it was minimal (less than 2 on my pain scale of 0 to 10) and usually was gone after I started moving around in the morning. Do you keep a daily journal with your level of pain and the dosage of prednisone for the day? What is your range of pain when you wake up?

@johnbishop yes, thanks to you I have been keeping a journal for many many months. My pain level is usually a 0 lately, occasionally a 1. I am stiff but that goes away within 5 minutes

It is very difficult to know. I empathise with this dilemma but having got through I can tell you my story. As I tapered stiffness returned and a little pain. My blood markers were ‘no inflammation’ from the time I started prednisone so I took it that prednisone was working. When I got to 1mg I still felt stiffness and when I stopped completely I had stiffness and some pain which gradually lessened over 12-18 months. I now know that this is normal. There is no magic end to it once finishing the medication but I found exercise slowly helped me regain strength and reduced stiffness. Now, I am entering my third year since stopping prednisone. I go to the gym twice a week for 3o minutes sessions and Pilates once a week in a small group on reformers. The only pain I get now is muscle pain from the exercise! Very minor stiffness when I get up but a few stretches and that’s it. Best of luck and kick the pills if you can as it is a nasty medication.

@cazwell50 I agree with your comments 100%. After tapering from prednisone, the gelling remained and the rheumy wanted to keep me on 2mg indefinitely. I decided to tough it out and the gelling eventually went away. My strength and energy level are lower than before PMR or on prednisone, despite weights and tai chi. But I'll take that over prednisone side effects any day. My journey has been complicated by osteoarthritis and a cecal volvulus, but I hope PMR is behind me.