Prednisone tapering is challenging. What does remission feel like?

Oh goodness you've already experienced this twice and this is my first time and still so much to learn. I appreciate all any information on how to cope with this illness and I will definitely read these articles!! Thank you! 😊

I always eat with my meds. At breakfast usually yogurt and fruit, evening with my supper meal or fresh fruit.

I have gone from 80 mg to 8 mg in 2 years. I am suffering from Prednisone side effects. I go down on the Prednisone 1mg every month and am quite miserable. Can’t wait until I am off the medication completely ( fingers crossed)

I have a question that I would like feedback on before I run it by my Rheumy. Since the pred is effecting my glaucoma adversly, pressure to taper is strong and here is the quandry. I realize that there are a lot of things giving me leg pain that is similar to PMR pain. I have trochantor bursitis (started in left side due to hip surgery, now effecting right side because of overuse.) I have balance problens involving weight bearing in my feet. (No dizziness or vertigo, fine on a horse.) These both make me struggle to walk and are very fatiguing. But the pain I experience in my biceps is unique and I am thinking of using it as my indicator of a flair and asking my Dr to try a taper. Hopefully, a slow one since in the past he has had me taper too fast. I welcome comments and advice. This is a very educated group. I am currently on 12 mg of methylprednisolone.

I've had the stabbing pains in the biceps with my PMR before I got on prednisone. I'm always looking for symptoms when I taper that are unlike anything I have had before and that is one of them. With my last flare it was stabbing pains under my shoulder blades, and chest muscles so tight that it hurt to take a deep breath. I am making my third attempt now to taper below 10 mg of prednisone. My main conclusion so far is that trying to "tough it out" through pain after a drop in dosage does not work. Symptoms just get worse. My MD has instructed me to stay at 9 mg for 3 weeks, then at least 4 weeks on 8mg. He will check my labs before I go lower.

My rheumatologist never pushed the taper. He always told me to listen to my body and if dropping to the next lower level caused more or difficult to deal with pain, possible up the dosage half of the previous taper for a week or so to see if it got better. He had me keep a daily pain log with the dosage I was on. For me, anything above a 2 or 3 level on my pain scale meant that I should taper to a lower level yet. Each of us are a little different with our pain so that's why it's important to taper slowly and listen to what your body is telling you.

Have you tried chair yoga to help with your balance? Here's a video that provides some gentle exercises that might help: https://youtu.be/8niEsMKSj2M

My rheumy isn't pushing the taper, my glaucoma is. And I realize that my legs are probably not a good indicator of my PMR status so I am considering letting my biceps be the indicators. (It was the return of pain in them that made me go back up in dosage.) I am definently going to look at the youtube excercises. I have had several rounds of PT and they helped while I was actually doing the excercises- a small amount. Tuesday I go to have my leg circulation ultrasound. That will be interesting and I hope, revealing. Thak you for your information.

You seem to have a good plan and I think that a 1 mg taper seems reasonable. Hopefully, my rheumy will be accepting. My opthamologist is threatening me with a more extensive surgery on my rt. eye if we can't get the pressure down. I've already lost some sight in it. I got the impression he was going to write my rheumy to switch me to another drug as if that would do any good. I have been trying to educate him about PMR but I think he is too bogged down with his own field. This seems to be the proverbial rock on a hard place. Thaks for your input.

My rheumy is upset that I'm not below 10 mg by now and brought up "steroid-sparing " medications. In my understanding these are more powerful immune system suppressors. I believe that you take both meds while decreasing the prednisone until you are just on the other med. Then you have to taper that one. I thought the rheumy was "jumping the gun" in my case and I'm glad he did not add the other drug. In your case it might be appropriate since the side effects of prednisone you have are serious. Others may have better info about the other medications. I think there was a recent discussion about Actemra.

I recently brought up the idea of "biologics" to him and he didn't want to vary from the path of steroids. He doesn't even think that methotrexate works. (It wouldn't work on me anyway, it a genetic thing.) I get the impression that he isn't very experimental. I may end having to shop around for another rheumy if I can't get what I need from him.