I keep relapsing when I try to get off prednisone

@yeb I don't think you are alone in your struggle to get off of prednisone when you get to a lower dose. You might want to read what others have shared in the following discussions to see if they might be helpful.

-- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/
-- Alternative to Prednisone for Treating PMR?: https://connect.mayoclinic.org/discussion/alternative-to-prednisone/

@dadcue, @nyxygirl and others may have some suggestions or thoughts for you. I kept a daily log of my pain and dosage and if my pain level was too much and I needed to to up my dosage, I would not go all the way back to a previous dose but I would split the difference to half of my previous taper down so that I still was taking less than the previous dose when I tapered down. Have you talked to your rheumatologist or doctor to see if they have some suggestions for alternatives?

My PMR is very similar to yours, although when going to less than 4 causes a relapse I have never increased more than 2 mg to get a handle on the pain.

I wonder if that's more likely to work if you do it fairly early rather than waiting for the inflammation to settle in. My flare at 6mg sent me back to 15mg. I waited for 6 weeks on 6mg hoping that it would resolve, but it got gradually worse instead and inflammation set right in. Going to 10mg made no improvement, so I had to go back to 15mg for 5 days and start the reductions all over again.

To help others, could you share at what stage you increase by 2mg to get things right again?

I just saw these webinars on the PMRGCAUK website and thought they might be helpful.

-- Improving outcomes through exercise and activity by Will Gregory, Consultant Physiotherapist and Clinical Lead of Rheumatology at Salford Royal Hospital and BSR Vice President
-- A bit of both? Hidden complexities in PMR and GCA - Dr Sarah Mackie

There is also a resources page on the site that has a tapering plan application page that looks like it could be quite useful if you are struggling to get off of prednisone. You might need to register but they don't track any personal information other than email address.
-- PMRGCAUK Resources library: https://pmrgca.org.uk/information-and-advice/resources/
-- Steroid tapering application: https://steroidtaper.azurewebsites.net/

I only increase my dose if the pain increases substantially, after increasing 2mg the pain usually subsides after a few days then I very slowly back off. I’m so sorry you have to increase so much for results, this is a frustrating condition.

I had to reduce by only 1/2 mg monthly, as I kept experiencing the same thing. It has helped.

Thank you! I will check this out.

My rheumatologist is suggesting Kevzara but the potential side effects make me reluctant to try it. Have you tried this?

Fortunately prednisone worked well for me and I didn’t need an alternative.

I took lot of prednisone for my lupus. Finally I took Rituximab infusion which helped me a lot with autoimmune lupus and ITP. I have my life back. I am 67 years old. Selina