How does your pain come back when decreasing dosage?

@ropnrose

I was on Metformin after I got off prednisone but now I don’t take it anymore. The endocrinologist that treated me for prednisone induced metabolic syndrome said I should have taken Metformin while on prednisone to prevent insulin resistance.

My blood pressure didn’t fare well when I was on prednisone. I needed 3 blood pressure medications to control blood pressures in excess of 200/100. My blood pressure is back to normal and I’m got off all my blood pressure medications after prednisone was stopped.

I don’t have any side effects from Actemra.

I’ve only been on prednisone for 5 weeks now. When I went from 20 to 15mg I had no change. Trying to go to 10 mg three (3) times and each time was the same ….pain started in one shoulder (same side) and started in one hip. I went back up to 15mg and will be attempting a 2 1/2 mg drop instead of a 5 mg. Each time it was the same.

@bonandrods That suggests that 10mg is too low to control your current level of inflammation. 2.5 mg may be too much to try as a next step. Perhaps best to try a 10% drop - 1.5 mg - and see how that goes.

@bonandrods
Agree with drop too big.
10% at best.
Also try 15 day 1, 12.5 day 2 and alternate for a week. If ok then try 12.5

@tweetypie13 Sounds good! Thanks.

Also you may need to take a breath and stabilize your system between attempts. Giving yourself 2 to 3 weeks at the previous successful dose before beginning a new drop helped me a lot. I regret I didnt learn about this until I below 5 mg and using the Dead Slow Drop protocol but it would have saved me some wear and tear on my moods and brain fog.

The more I read other people's stories the more I have confidence in my rheumatologist. I was diagnosed with PMR as March and started on prednisone. I started at 30 mg and have been doing a slow taper. I am now on 3 mg. I am doing ok and was glad to read that the body must adjust to each taper. I find that to be true. My goal is to go off prednisone completely.

@dadcue
Thanks, dadcue. Words of wisdom.

@csimmonds

Interesting that you started at 30mg in March and now you are already down to 3mg , as my rheumatologist started me at 15mg one month ago and now has started to taper me off as I am responding well to the treatment.

I am now at 14mg but he is only tapering me at 1mg less each month, insisting that this is the proper protocol.

Thus, 15 months cure if all goes well.

And he said that 15mg was the maximum that one should be prescribed for PMR.

I am based in Belgium.

That is a big difference. From reading reports from different people in this forum I have realized PMR has a wide range of experiences. That is true in their pain level, dosage of prednisone and other medications, and length of time they taper. Some people seem to go long periods of time in remission and some have a great deal of difficulty getting the pain under control. I think I was on 30 mg for 3 weeks and have gone down at regular intervals. One thing most agree on is to be patient and go off prednisone slowly. I know one person told me that the slow and steady treatment with prednisone is particularly important with your first episode.