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

I started last November at 10mg which gave me a lot of relief (and hope) almost instantly. After about 3 weeks it didn’t seem as effective and my rheumatologist increased it to 15. I had energy all through January. The side effects were increased insomnia (a problem I already had) and weight gain. The trouble began when my rheumatologist said I needed to start tapering. I went from 15 to 10 with no problem but when I got below 10 all my pain especially in my shoulders and knees began to come back. I made it down to 7.5 at the beginning of March but at 5mg now I can hardly get around. I play handbells and the movements are so painful for my shoulders and biceps. I am feeling kind of hopeless because it’s also difficult to dress myself. I don’t know what to do. I don’t have to get off the steroids. I just started to experience the skin tears on my left forearm. I wish they would come up with some medicine that does the same thing as steroids without side effects..

I too can relate. Tapering off very conservatively (1 month 1/2 mg decrease) had increased pain at 3 mg so jumped back to 5 mg and pain decreased. But tiredness is unreal. I know the adrenals do take time to “wake up” and function again. Brain farts are constant! I’ll do something and completely forget I did it, and do it again. Hence one rather fat cat lol.

Having great difficulty with this taper. Went down 5 mg. on Feb. 23 which was not bad at all. Went down 2.5 mg on March 21. Having a really hard time. Mood swings are awful. I don't even like myself. So nasty sometimes. Other times ok. Energy is gone down the tubes. A lot of diarrhea and I've been trying to determine what I'm eating that's causing it, but I think it's the decrease in Prednisone. Neck aching in the mornings again. Headaches in the afternoons and of course the sausage finger is acting up. Thinking of going back up to 15 mg. to see if it's the weaning and then will try again in a couple of weeks with a smaller taper. Is this normal and is 2.5 mg too much of a taper. Seems as though it is, but maybe I have to try it for longer than a week. I can handle the extra pain, but just hoping it does not worsen or leave me vulnerable for other things. Brain fog too, like forgetting what I just did. It's very irritating and I find myself angry. Allergies seems to be ramping up earlier than normal. Ears popping, eyes itching and a little red. Runny nose. This is not a complaint, but rather a quest for knowledge as I can rarely get hold of my neurologist. Thanks for any info. ~ Deb

Having great difficulty with this taper. Went down 5 mg. on Feb. 23 which was not bad at all. Went down 2.5 mg on March 21. Having a really hard time. Mood swings are awful. I don't even like myself. So nasty sometimes. Other times ok. Energy is gone down the tubes. A lot of diarrhea and I've been trying to determine what I'm eating that's causing it, but I think it's the decrease in Prednisone. Neck aching in the mornings again. Headaches in the afternoons and of course the sausage finger is acting up. Thinking of going back up to 15 mg. to see if it's the weaning and then will try again in a couple of weeks with a smaller taper. Is this normal and is 2.5 mg too much of a taper. Seems as though it is, but maybe I have to try it for longer than a week. I can handle the extra pain, but just hoping it does not worsen or leave me vulnerable for other things. Brain fog too, like forgetting what I just did. It's very irritating and I find myself angry. Allergies seems to be ramping up earlier than normal. Ears popping, eyes itching and a little red. Runny nose. This is not a complaint, but rather a quest for knowledge as I can rarely get hold of my neurologist. Thanks for any info. ~ Deb

I started last November at 10mg which gave me a lot of relief (and hope) almost instantly. After about 3 weeks it didn’t seem as effective and my rheumatologist increased it to 15. I had energy all through January. The side effects were increased insomnia (a problem I already had) and weight gain. The trouble began when my rheumatologist said I needed to start tapering. I went from 15 to 10 with no problem but when I got below 10 all my pain especially in my shoulders and knees began to come back. I made it down to 7.5 at the beginning of March but at 5mg now I can hardly get around. I play handbells and the movements are so painful for my shoulders and biceps. I am feeling kind of hopeless because it’s also difficult to dress myself. I don’t know what to do. I don’t have to get off the steroids. I just started to experience the skin tears on my left forearm. I wish they would come up with some medicine that does the same thing as steroids without side effects..

Oh Deb what a journey this is. It is so difficult to find a balance as our body does not always follow conventional protocols for weaning. I’m sorry I don’t remember her name but a very informed member of this group said “ your body determines you’re weaning process“
(She used better words than I just did!) even at 5 mg when I dropped very conservatively and managed to get down to 3 mg over four months, my body Gave me a reality check and Wham ! I thought my whole life was falling apart. I will be honest and admit that my ego gets in the way and overrides the messages my body gives me sometimes. I recognize that prednisone is not kind to our bodies but there is a point where quality of life comes out on top. Please let us know how you are doing 💞

I am dismayed by the pain some experience because of bad tapering advice. If you felt okay at 10 mgs., I would go back to that, stabilize and then try a very slow taper. Dropping to 9.5, stabilize (make sure you feel reasonably well) and then drop to 9. No rush, you're body will tell you when it's okay to lower the dose. If you drop too fast, inflammation will accumulate and you'll have a flare. Remember, PMR lasts 5.9 years (on average according to Mayo studies). Many docs think it only lasts two years and try to taper us based on that faulty belief. We have to listen to our bodies and not follow a tapering scheme unless it works for us. Recently I tried to drop from 10 to 7.5 (something I normally wouldn't do or suggest) due to an upcoming surgery. I was actually pretty good for maybe a week and then the pain and stiffness increased each day until I was nearly as bad as when I was diagnosed. We can't rush it. Prednisone only covers PMR pain. The PMR is still there until it isn't. I'm 2.5 years in and waiting for that day.

Yes ego is an issue, because we think we should be doing more or doing better. I have decided to re-start the second weaning in a couple of weeks (so it's back up to 15 mg. for awhile).
15 mg. to 12.5 mg. may have been too much at once. So I will try going down by .5 next time. My pills are 5 mg. so cutting them in half was easy. Cutting them in quarters may be tricky. LOL. I think the lesser and slower, the better at this point.
You're right - the body knows best. Thanks so much and take care.

True on the ego and just wanting to be off prednisone. I was so excited when I thought I would be okay at 7.5. Then reality set in. Also, it would be good if you could get 1 mg. prednisone in addition to 5 mgs. That makes tapering much easier.