How to address PMR pain while decreasing prednisone

@dreamer38 I'm sure we've all done that when we were trying to taper off or down and the pain was too much. Yes, I've bumped my prednisone up when the pain from my PMR was a little too much than I could handle. My rheumatologist was great working with me to come up with a tapering schedule. What helped is he wrote a script for 1 mg prednisone pills and I could easily add 1 mg or 1/2 mg if needed.

@dreamer38 I, too, have bumped my prednisone up and down. I’m tapering down from 15mgs. My neurologist knows that it’s going to be hard and she said to go at my own pace. I successfully went down to 14mgs, but when I dropped to 13, it was awful. I went up to 14 again and I’m like a new person! But I’ll keep trying.
I’m sort of in the same boat as you, but my doc isn’t on vacation, she went to a new job at UT. The doctor she put me with is on maternity leave, so I’m up in the air! I’ll just slowly work my way to 10mgs and stay there.

I know everyone is different but I got to1mg in 18 months. FYIO: I was down to 5 in a year and had to stay there for a few extra months as my numbers from my quarterly blood work had gone up. My tapering schedule was started at 20 and I went down 2 1/2 each month until I got to 10 and then went down 1 each month until 1. Stayed on 1 two extra months and after that I stopped Prednisone.. It may come back but for now I am good. I followed my Rheumatologist's tapering schedule and had quarterly blood draws and so far it worked for me plus lots of good help and encouragement from John and others on Mayo connect.

It was not originally prescribed to take the place of ,but to assist the prednisone to taper off. My local rheumy says I can use at lower dose if needed and I do.I started on prednisone almost 4 years ago when my GCA and PMR was positively diagnosed.I have had many ups and downs but feel pretty good now. Thank the Lord. Long road. I have eliminated sugar, soy, dairy, and wheat which has helped immensely. I eat those things VERY sparingly. I wish you the best. This is just what ,by many trials ,has helped me.

@becsbuddy...thanks for the info. How long were you on 14 mgms before you dropped to 13 and did the pain come back right away? My rheumy is back from hols and I have an appt for tmo, thank goodness! Any info you want to pass on, I would appreciate getting. Again, my thanks for replying. It is a comfort to know that there are humans out there who have this dreadful disease! One doesn’t want to complain, and it’s a real blessing to have friends who have a sense of humour!!! For that, I am so lucky. Good luck with your next dr. I notice you said ‘neurologist’ and not ‘rheumatologist’. Didn’t realize that they could handle PMR as well.

@johnbishop..thanks for info, John. When you ‘bumped’ up your Prednisone, have you any idea how long you waited before ‘bumping’. I see the rheumy tmo, and I know she has talked about the handling of the pain, but truly, I don’t know how long to gauge the length of time when I must add more meds. I do like the fact that your rheumy wrote a script for 1 mg pred so you could add same if/when needed! I’m on quite a few meds and am very leery about taking more of one thing! Thanks for any wise words you can think of. When your pain was really bad, were you able to walk and did it help?

@dreamer38 I normally waited a few days to make a change just to see if it was an overnight thing with the additional pain level. If the pain level didn't increase and it was tolerable I let it go another day to see if it would stay the same or get better. Some instances I found that the pain level decreased a little the next day. I'm sure it's different for each of us so it's something you just have to experiment with by making small changes up or down. My small was usually 1 mg or 1/2 mg prednisone. I found a good pill cutter and could cut the 1 mg tablets fairly easy.

Glad you wrote about taking a small amount of predsnosone when tapping down or up John I have been meaning to do this A little goes a long way. Beryl

@dreamer38 I’m so sorry, I guess I misled you. I have a brain lesion, not PMR, but tapering the prednisone can be the same. I was on 15mg for about 6 months, then dropped to 14, felt awful so back up to 15 for a few days, then 14 for several weeks, then to 13, again felt awful so back to 14. Today, I’m trying 13 1/2 and we’ll see how it goes! The prednisone just adds to our misery about the disease, doesn’t it? Best of luck to you!

If you’re not on warfarin try taking vitamins D3 and K2. They’re both anti inflammatory and great for the bones. I use K-vitamins.com read their website and links.