Anyone have discomfort or pain when tapering off prednisone?

My Neuro-Ophthalmologist told me that what I am going through can definitely occur with steroid withdrawal. This validated me. None of my other doctors knew what to do with me.. I especially like what kmeikle1 had to say. I am going to discuss this with my rheumatologist . Thank you

My experience has been similar. I had to go back up 1mg to 17mg for 2weeks and then alternate days between 16 and 17 for a week to get to two weeks of 16mg without pain. I’m ramping down to 15mg tomorrow and plan to do the same (alternate by 1mg and then 2 weeks of 15).
It’s really slow but I’m hoping it continues to work. Best of luck with your situation!

Same here. 5 mg was too much, i.e. from 4 pills down to 3 and the pain started up again, although not as horrible as before. So I upped it by 1.25 mg (so 16.25) which has helped a bit and thankfully, after emailing the Neurologist, I have an appointment at the clinic today. Relief, because I've been more or less winging it on my own out here, making unilateral decisions about my health. The slower with the tapering, the better. I think you've made a smart choice in the 1 mg. bi-weekly. All the best with your journey.

Thank you! My Rheumatologist agrees with us and has adjusted the tapering to a more gradual pace. She also says everyone is different, so there's no set dosage for this process.

You're welcome. Saw Neurologist just this afternoon and we will start trying tapering at 2.5 mg next week. (Which I think is a bit too much, but he suggested it). If it's too much then I will adjust the dose. He does agree that a little bit at a time is better. It does take time for our bodies to adjust to the new dose. It is different for everyone and sometimes feels like a roller coaster ride, but we'll get it right, 1 silly little mg. at a time. LOL. Take care.

My rheumatologist just changed me from Hydrocortisone back to Prednisone since I am so miserable. He feels he can titrate the Prednisone better than the Hydrocortisone. I hope I get to a good dosage soon and the awful body pain goes away.

I am on 3 mg prednisone per day and have should/back pain in the morning. I take prednisone in the morning and by the afternoon I feel pretty good! Discomfort almost gone. By evening it seems like the prednisone wears off. I read on a forum that it leaves the body in 2-3 hours although good anti-inflammatory effects can last 12 hours or more. It seems like it's 12 hours for me. Anyone else feel it wears off in the evening? I also have a hunch that tapering at lower doses brings out another wacky side of PMR not seen before! For instance, the shoulders into the back pain, some top of the thighs (was entire thighs when first diagnosed -- and a lot of pain). What a strange disease!

I just feel it is acting differently now than when it was full-blown PMR and needed higher doses of prednisone (and what a wonder drug it has been in giving me my life back, even with its possible downside). Thanks to all! I appreciate your input/ feedback.

I definitely have different symptoms now than when the PMR started about a year ago (on prednisone 8 mos, down from 20 mg to 9). I've read one of the symptoms of PMR described as "cramping" but what I had originally was not like any cramps I have ever had before. In the morning or after sitting it was just extremely painful to move my arms or legs a small distance. To get out of bed or a chair required many small painful movements. Smooth, coordinated motion was out of the question. My shoulders were so stiff that I had to work my hands up a wall multiple times a day to keep my shoulders from freezing up. Now it is mainly pain in my upper body and movement is not a problem. I thank prednisone for that.

I am really tapering down my methyl prednisolone. mYYrheumatologist had had me on methotexate for about 9 months in addition to methylprednisolone then in February i bean taking injections o Kevzara. Now that I have been on if for a few months she just decreased my methylprednisolone to 4 mg a day - I am now down from 16 mg a day to 4 mg and I am so happy. She thinks I will begin to lose the 40 pounds I have put on over the last year. So happy to be almost off the methylprednisolone and still feeling okay! Sine adding the Kevzara I have been decreasing the methylprenisolone every month slowly to now 4 mg!