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Has anyone successfully weaned off prednisone without using a biologic
Polymyalgia Rheumatica (PMR) | Last Active: Aug 25 9:46am | Replies (32)Comment receiving replies
What you experienced sounds a lot like what I experienced that was identified as adrenal insufficiency. Did you doctor suggest this problem or test for it? It can often feel like PMR pain but the cause is that the long-term use of steroids put your adrenal glands to stop working since the body is getting steroids orally. waking your adrenal gland up can be easy or it can take weeks to months to taper very slowly.
This is a short article on adrenal insufficiency from the National Institute of Health - https://www.niddk.nih.gov/health-information/endocrine-diseases/adrenal-insufficiency-addisons-disease/symptoms-causes
It states "The most common cause of adrenal insufficiency overall is suddenly stopping corticosteroids after taking them for a long time." My understanding is "long term" in this case can mean greater than 2-3 weeks.
I had to define a very slow tapering plan once I hit 10mg. It seems that that is about how much your system publishes when your adrenal glands are fully functioning if you are not on oral steroids. Once I started to drop below 10 it was slow and steady drops in oral steroids that won the race. Looking at it from what you are providing your body, dropping from 10mg to 5mg is a 50% drop in what you are providing your body. If your adrenal glands are not fully awake your body is not going to get the steroids it needs and your body will complain big time. Those pains could easily be confused for a PMR flare. Below 5mg I would drop 1/2 mg every time I dropped. It took awhile, but it worked.
Replies to "What you experienced sounds a lot like what I experienced that was identified as adrenal insufficiency...."
I have been on prednisone for 4 years and have recently changed rheumatologists due to the previous one relocating. Progress had been made in reducing dosage from 20 to 8 mg during that time. The new specialist plans a more aggressive reduction schedule. The first change was to drop to 7 mg and stop the Hydroxychloroquine completely. The effect on my mobility of the first drop was nominal. But after two 0.5 mg reductions over 6 weeks, I am at 6 mg, but really suffering with the last step down. The last couple of days, I've had swelling around my knuckles, weakness in my grip, tingling in my hands, discomfort in my shoulders (causing restless, uncomfortable sleep) and during a 2 mile walk yesterday, soreness in my hips.
I'm sure each case is different, but need some sort of timeline on the progression path. Am I looking at a 6 month or 4 year objective? Even that would help with the mental health aspect of this affliction.
I'm scheduled for neck x-rays next week before my next appointment the following Tuesday. Perhaps, I'll know more after.
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I agree completely. Your advice is much better than how I did it or how I would advise someone. I was giving my example that the pain you feel when tapering is not necessarily PMR. Many confuse this prednisone taper with PMR pain. When in fact they are almost identical. My wife has cancer and takes Dexamethasone. I know the effects of steroids. I was determined to get off. A scale of 6-7 pain for most would make you think its PMR but I stayed the course. I understand you can let prednisone pain restart the PMR but I was willing to give it a shot. But I agree with everything you said in your analysis.