Has anyone with PMR been able to get off prednisolone?

I had been on prednisone for over two years. Every time I tapered, I had more pain.
A couple of months ago I had a terrible stomach bug. I couldn’t keep anything down for four days. No good or medication. So I didn’t take it. My body seemed completely purged, but I noticed, as sick as I was, I was not having the pan I usually experience. So I did not go back to the prednisone. (I was on 2 mg).
I found I do still need pregabalin for nerve issues, but I believe the prednisone was actually causing some of the pain I was experiencing. I can’t prove it, but I am not going back to it.

From being on this site I notice folks rarely have just the PMR that they are treating. Some have bad osteoarthritis, myself included, some have restless leg syndrome, I am finding that is me too. Some have eye issues. Etc. it is difficult to tell, when on Prednisone, what is what.

I do not plan to go back on this drug. Yet I know that if my horrid symptoms that landed me on it in the first place return, I will have to. But for a very short period. I think it masks other problems that might be better treated by something less harmful to the body.

I have already noticed a change in my skin. I don’t feel like I look as old. And I am sleeping better.

Every body is different, but I am delighted I had that stomach bug.

prednisolone is a version of corticosteroids. It has the equivalency of prednisone it just metabolizes differently. Dexamethasone is the strongest at about 5.25 to 1 strength of prednisone. Prednisone is 5 times stronger than hydrocortisone. So I would think there are many that have gotten off the steroids without a relapse. I was able to get off in 6 months. I did have 1 relapse but I treated it with a 5 day pack and stopped. I have been off 3 years. I dont know about the 50% statistic. That seems high.

@thereselefever
I tapered off prednisone on February 20… I had occasional itching with hives while on it. I haven’t had it for a while now.
I think some of us have some strange reactions to prednisone that cause us to experience unusual symptoms. I personally will never go on it again.
Glad you are doing better off of it!🙏🏻

Yes I am off prednisone…have shoulder pain and stiffness in my body. My arm is the worst!

Hi,
It took me a year and a half to get to 0 mg. The last few tapers, especially the one to 0, were really difficult, because prednisone causes your body to stop producing it's own pain killers. So you start to really feel the little aches and pains that may have been background noise before PMR. And you are in withdrwal. It can take a while for your adrenal glands to start producing enough cortisol again, but everyone is different. I have been off of prednisone for 6 months and have been controlling my discomfort with Tylenol at levels that are supposed to be safe. I've been slowly trying to reduce how much I take.
The prednisone appears have caused me to develop glaucoma, but my optometrist and ophthalmologist agreed to my pausing the glaucoma drops for a month to see if I can safely stop them altogether. This could not happen if I was still taking Prednisone.
I should also mention that I noticed during a couple of extremely stressful events near the end, when I did not take any prednisone, I found that I did not seem to have much pain at all. I chalk that up to the stress somehow jumpstarting my adrenals. Though I always mention that you should not try that at home.
Best of luck!

Thank you for sharing. Like you, I notice increased aches when tapering, so expect this will also be the case when I try and get to 0mg. My vision has been affected and I have had to get stronger glasses for reading. I'm, glad you have had 6 months off prednisolone so far, encouraging to hear and I hope your recovery continues. Interesting about the stress, but won’t be wishing for it! The experiences shared make me more confident about trying to taper to 0mg over the next few months. All the best.

@thereselefever
Thanks. Very encouraging to hear you have managed to be off prednisolone after your illness. While it was such a relief to be relieved of the pain back in June, I really don’t want to be on this medication for the rest of my life. I have had similar experience of aches for about 5 days after a taper, then things seem to settle down. Good luck, I hope you remain free of PMR symptoms.

@tuckerp
Very pleased to hear that you have remained off prednisolone for 3 years. I know everyone is different but the positive responses to my query make me think it is definitely worth a try. Thanks for the information on how the medication works.

@caroljeand
Thanks. Good to hear you are off it and doing well. I will get there,

My taper was 1/2 mg per months for almost 2 years. I have been off Prednisone for one year and so far no relapse. just some neck pain and fatigue, but manageable.