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Body aches/ stiffness after Prednisone taper

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Posted 4/2/2017 2:11 PM (GMT 0)
So I'm finally off Prednisone now, thank God. Problem is, beginning at 5mg, I started to get aching in my shoulders when I moved them a certain way. After a week of being completely off Pred, I started to get aches in my hips. Then gradually other parts of my body began to ache and feel stiff: knees, neck, elbows, then even the sides of my hands (but not my knuckles, fingers, or wrist -weird because the side of the hand is not even a joint?) and then even the bottoms of my feet! (Once again, not my toes or ankles).

I basically feel like I just got through moving furniture the day before. It helps if I stretch, and it seems like the more I move, the better it gets. If I sit for more than an hour, it's SUPER stiff to get up.

Before I go scheduling an appointment with a joint specialist, is this just adrenal fatigue or could it be because the Pred chewed up my bones?

I did taper rather quickly, over the course of about a month and a half. I was on 40mg for four months before I started tapering. I went 40-30-20-10-5-0 in 1 week intervals.

Post Edited (Canaveral) : 4/2/2017 11:15:42 AM (GMT-6)

Posted 4/2/2017 4:45 PM (GMT 0)
I think it's okay to taper high levels of prednisone with weekly intervals, but when you hit 10mg you have to take things much more slowly. Personally, I would have kept on the 10mg for three weeks to a month, then the 5mg for three weeks, then 2.5mg for a couple of weeks. (just an example)
Posted 4/2/2017 4:50 PM (GMT 0)
I think this is extra-intestinal manifestation of UC or other auto-immune in your body. The pred would have masked it. Since you did taper it is less likely adrenal fatigue. You could test by taking 1-2mg of pred for a few days.
Posted 4/2/2017 5:12 PM (GMT 0)
Well I've been off the Pred for two and a half weeks now. I did not have any body aches or stiffness before the Pred, and it did not start while I was on it. Only after I stopped.

I also started Remicade during this same period. I started getting the first aches shortly after my second loading dose. Coincidence or not?

Also, what on earth kind of condition would make the bottoms of your feet and sides of your hands ache, and gets better the more you move but worse the longer you're still?

Post Edited (Canaveral) : 4/2/2017 11:51:34 AM (GMT-6)

Posted 4/2/2017 7:19 PM (GMT 0)
Sounds like adrenals failing to awaken to me. Are you also fatigued and/or having trouble with your sleep cycles? If so then I'd say that's it!

You can go on a low dose of pred and alternate your day-to-day for a week and see if you can awaken them, yourself (5mgs one day, 2.5mgs the next, back to 5mgs, and so forth and work down to zero using 1mg drops). If not, then you might need to see an endocrinologist. They can measure your current cortisol levels and prescribe a hydrocortisone regiment to get those pesky adrenals to awaken.
Posted 4/2/2017 8:12 PM (GMT 0)
I can't say that I've been feeling particularly tired, but I did for the first four or five days after tapering. But I have had a few acute stressful episodes (defensive driving on the road) that were adrenaline rushes, and I did feel super dissociated -almost like a drop in blood pressure- after the initial rush. Normal or no?

I'd rather not go back on Prednisone if possible. I'm just now finally getting my face back, lol! Is there any other way to wake my adrenals up, if that is the issue? Will they just wake up by themselves if I just keep going?
Posted 4/2/2017 8:35 PM (GMT 0)
Well, the Remicade has to be suspect if you started it in this time. Get checked for antibodies formation.

Adrenal fatigue does not typically persist for weeks after pred if there was some sort of taper and you were not on it for months and months.

A lot of inflammation related things stiffen up and get painful when immobile or prone. When you stand or move, the muscles push extra fluids out of tissue and back into circulation.

You can have blood word done for inflammation, although it is not always a good index. You can also ask for a weak diuretic to see if it is fluid related.

good luck
Posted 4/3/2017 12:17 AM (GMT 0)
Interesting thoughts. I was on Pred at 40mg for over four months -does that count as months and months?

I guess I'll have to ask my doc for a blood test for the Remicade, as well as for adrenal function and inflammation. I guess that's the best thing to do at this point right?
Posted 4/3/2017 3:22 AM (GMT 0)
I do not consider 4 months a long time. I was on a 15-20mg dose for almost a year. 40mg is also only moderately high.

but individual results vary because our bodies are unique
Posted 4/4/2017 3:26 AM (GMT 0)
Could be adrenal fatigue. 4 months on steroids doesn't seem long compared to some but people are so different.

My husband was on for 3 years when very slow taper induced adrenal fatigue and he was pretty sick. What you are describing and more. He ended up seeing an endocrinologist, went back up to about 8 mg and is not tapering .5 mg every month. Our experience with two GIs was that they had great ideas about tapering, but didn't really understand how to deal with the adrenal issues.

I believe some people on Remicade experience joint paint, so it could be that too.
Posted 4/4/2017 1:34 PM (GMT 0)
This is normal; I had the pain and aches for a full year after I stopped taking prednisone......the gift that keeps on giving. It will eventually go away.

Sue
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