Tapering off of Prednisone

After reading several posts, I am going to go down by .5 .
I am at 6.5 now. Will go to 6 and then to 5.5. The Mayo posts have made me understand the necessity of very slow tapering and also Not overdoing activity.

Not sure where to put this post. (John, up to you.) Recently, I had a surgical procedure and I approached my rheumy beforehand about how to handle my pred. (I'm on methyl prednisalone which we know is stronger than prednisone.) He told me to ask the surgeon, so I did and she referred me back to him. Finally, I was told to double my dose (I was taking 8 mg so 16 mg.) Skip the day of the surgery (no food?) and double up again the day after. So, I did. A pleasant surprise was the anesthesiologist who ask me all about it. What exactly I was on, how much etc. She was ready to boost me if I needed it while I was out. I felt good that I was in informed hands. All went well, I didn't need a boost and my BP was good when I got home so I just followed instructions and took the 16mg the next day. Interestingly, the extra pred didn't help my leg pain so I am pretty sure it isn't PMR. Just thought everyone would like to know my experience.

@keetaboy I was pain free when I started at 15 mgs., but some people require 25 mgs. to start. It's your call really. If I'm reasonably comfortable I try to stick with the dose. However, if you're not getting enough prednisone, the inflammation accumulates and you'll have a flare. So, I was pain free at 15, tolerable at 12.5 and in three years haven't spent much time under 10 mgs. Got to 7.5 briefly, had a flare, followed flare protocol and added 5 mgs to 12.5 and am now at 12. In my experience you have to follow your body. We all want off prednisone but you can't force that. I'm one of about 20% of people whose blood tests normal so that doesn't help with tapering. Slow and easy. And I haven't read much that would lead me to hydroxychlorquine (at least for PMR).

@keetaboy I was pain free at 15 mgs. when I first started. Some people require 25 mgs. to get there. We're all different so you can't follow a prescribed path. I was fairly comfortable when I dropped to 12.5, but not pain free. I decided to stay there and that worked fine for me. In three years I have been unsuccessful trying to drop below 10 mgs. If you don't get enough prednisone, the inflammation accumulates and you'll have a flare. I follow the flare protocol and go up 5 mgs. until the inflammation is absorbed and I'm doing well. Then drop back to where you last felt good. I'm one of 20% of people whose blood work is normal regardless of inflammation so I don't get much help there in terms of tapering. I taper according to how my body reacts. I would not be inclined to use hydroxychloroquine based on what I've read.

Thanks for the insight. At 20mg, it has been a slow decline of the pain/discomfort. Interesting that the first time 20mg worked like a charm. I will try 25 to see if it removes all pain first before tapering. Anecdotal perception, perhaps my immune system was overloaded due to all the “infections” over a 6 week period, and needs an extra boost of prednisone to counter the infection. Layman talk
As for hydroxychloroquine, due to being a G6PD enzymes deficiency carrier, am reluctant to take medication, and Dr. Has deferred prescription. Plan to supplement prednisone is now deferred. Have you had experience with the other medications used to help tapering? Ie. methotrexate?

@keetaboy I was offered methotrexate several times. I discussed the research with my rheumatologist most of which showed little help and unwanted side-effects. My rheumy agreed the research does not support adding yet another drug to the mix. Steroid sparing meds don't have a good track record. According to Mayo, the average duration of PMR is 5.9 years. Steroid sparing drugs won't change that for most of us.

I been on prednisone for PMR and GCA since January 2022. I started at 60mg. Once I got to 10 mg I am going down 1 mg a month. First couple weeks I alternate with a .5mg. I’m at 8mg now and getting ready to start weaning to 7mg. The past couple of days I feel like I’m having a flareup. Dull headache, neck and lower back aches. My left leg is week and my thighs hurt. I even had diarrhea. I don’t know if this is a flareup or not. Not sure if I should start weaning down or stay at 8 for a couple more days. What symptoms did you have when you had your flareup?

When I had the flare up, I had many of the same symptoms you described. It always starts with my shoulders and neck hurting. then the hips get a weak feeling, like my legs don't want to hold me up. Then I get headaches. If I was you, I would go back to 10 and see what happens. You don't want the flare up to get worse. Dr. Zaidi told me to stay a couple of months at each level when I know I'm good go down by 1/2 mg. and repeat the process.

Thank you for your advise. I hate this. I don’t get much help at all from my doctor. I’m also getting Actemra infusion every 4 weeeks.

My opthalmologist told me if anyone puts me on hydroxychloroquine, he would want to see me regularly. It can cause blurred vision, retinal damage, and color vision. Yeah, that's just what we need, right?