How did you cope with the side effects tapering off prednisone?

I’ve been struggling with tapering since January. I was doing well at 15mg but had a small amount of pain so my dr suggested going to 20mg. This worked but my side effects increased. Then after 2 weeks he said I should go back down to 15mg. What a mistake! I’ve bee struggling up and down from 15-18 mg ever since. I’m trying to taper now from 17 to 16 every other day for a week and then 16. My labs show a slight increase in inflammation so I have my doubts this will work. I get labs done every 2 weeks. . I have prescriptions for 1mg and 5mg. This blog has been so helpful in helping understand how to navigate PMR !!!

I also am struggling with tapering. I started in November when I was diagnosed at 10 mg of prednisone. That was a big improvement for about a week and a half until it started to feel like it was losing efficacy. My rheumatologist bumped it up to 15 mg and that was really wonderful. I had a little energy again and things felt possible. I stayed on that until after Christmas and then he began to push me to taper. I had 2.5 mg tablets so I cut them in half and I was OK at the end of January at 8.75. At the end of February I was down to 7.5. I felt some of the pain returning especially to my shoulders and biceps. I stayed on the dose until the middle of March when I noticed that after scratching my arm because of cat allergy I had broken a bunch of blood vessels below the skin. That had never happened before and I was scared. I read on this board that that can be due to long term steroid use. I went down to 5 mg immediately, skipping the 6.25 next drop. At 5 the pain is pretty brutal. I have a difficult time even dressing myself because reaching behind my body to pull up my pants it’s a real exercise in pain. I visited my regular GP Today to get my thyroid levels checked. I also have Hashimoto’s thyroiditis. I had to ask a friend can you drive me and push me in in my transport chair. My regular GP was surprised that I was even still on steroids at all. I am feeling sort of hopeless. I’m going back up to 6.25 to see if it helps. It was so nice to have relief from pain for a little while, but difficult for my body to give it up. I have also tried to follow some of the menu changes. I am 70 years old but I am still working because that gives me a sense of purpose and something to keep my mind active. At least I can work remotely from home so I can go in my own pace.

@mzamyl, I'm sorry to hear that the tapering has really been hard for you. I struggled with tapering during my first occurrence with PMR. I'm wondering if you might find the following discussion helpful.

PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

@maryft, @juneh, @aspine, @tsc and others may also have suggestions for you.

It is a struggle bus. I did ok with going from 20 to 15. So after a month of being on 15 I tried to take it down to 12.5. Big mistake. Pain has returned, although not as bad as it was. Decided after a week of being on 12.5 to go back up to 15. Now waiting for neurologist to call me. No bloods done since January, so figure I'm due. Also don't want inflammation to build up. My family doc retired in December. So I'm kind of winging it here. Side effects have increased in that short a time. I totally sympathize, Try to stay positive and yes this is the greatest blog ever. I knew nothing and at least now I know a couple of things. Our colleagues here are all extremely helpful and caring. All the best with your weaning process, which I feel is completely different for everyone.

Yes, indeed it is a challenge. I tried to decrease my prednisone by 2.5 mg, going from 25 to 22.5 mg, but I had repeat symptoms. So, back to 25 mg. Then, I decreased by 1 mg decrements at a slow pace. What really helped though is that I was started on methotrexate and this allowed me to continue decreasing slowly by 1 mg amounts. This worked for me during a previous episode of PMR in 2018. Mind you, methotrexate has its own set of challenges and these are discussed in other blogs, but so far is tolerable. Here is the link to a good article from 2015 on the management of PMR and its by the American College of Rheumatology and European League against rheumatism. The flow chart shows that methotrexate can be considered when its difficult to wean off prednisone. Hope this helps
https://onlinelibrary.wiley.com/doi/epdf/10.1002/art.39333

It is a struggle bus. I did ok with going from 20 to 15. So after a month of being on 15 I tried to take it down to 12.5. Big mistake. Pain has returned, although not as bad as it was. Decided after a week of being on 12.5 to go back up to 15. Now waiting for neurologist to call me. No bloods done since January, so figure I'm due. Also don't want inflammation to build up. My family doc retired in December. So I'm kind of winging it here. Side effects have increased in that short a time. I totally sympathize, Try to stay positive and yes this is the greatest blog ever. I knew nothing and at least now I know a couple of things. Our colleagues here are all extremely helpful and caring. All the best with your weaning process, which I feel is completely different for everyone.

That seems like a very large increase in pain for a fairly small drop in dosage. If it were me I would call my doctor. I started on 20 mg of prednisone and did not have any pain until I got down to 8 mg. That was about 4 months into treatment.