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6 replies

how did you feel after long term prednisone?

TheRealBrettTravisTheRealBrettTravisMember
I had my Step 1 surgery in Dec 2013, with Step 2 scheduled Aug 28. About 3 weeks ago, I finally tapered down to ZERO prednisone, after taking some amount (high of 40mg/day, low of 5mg/day, always trying to taper) of the drug since 1997. Soon after stopping completely, I've had vastly increasing bone pain and body stiffness, and fatigue. My GP has tested blood for RA, but that was negative. He's going to test again next week.

Can anyone share their experience of going off prednisone after 10 years or more of taking it? Thanks!
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CTBarristerCTBarristerMember
I have not taken Prednisone since 1992, after taking it for about 20 years on and off. At the time of J Pouch surgery I was taking about 60 mg daily and had to be weaned off. I experienced some withdrawal symptoms, mostly dull chronic type headache which lasted about a month or two.

In 2010 I had my very first bone density scan which found osteopenia in my left forearm. This was attributed to the long-term prednisone use.
CTBikeBoyCTBikeBoyMember
I was on pred for about 4.5 years. I finally stopped taking it last November. I definitely noticed the stiffness. It was the worse when I first got up in the morning and especially in my legs. I workout six days a week, so I'm not sure if the stiffness is due to that, my age, or coming off the pred. On the other hand, it may be a combination of the three. Either way, it has improved over time. Just give it some time and you will be good to go.
K ks1905Member
I don't miss it at all. I had the stiffness, joint pains, and exhaustion as soon as I got to 0 mgs.

I was miserable but I remembered my GI telling me about Sulfasalazine also being an arthritis drug as well as being used for UC. I started up the Sulfasalazine again and it really helped with the joint pains and stiffness. He originally gave it to me when I first started Predisone to help with some of the side-effects and the UC flare.
P PluotMember
I did not take prednisone for nearly that long, but I had excruciating joint and muscle pains as soon as I hit 0 mg. My knees felt like they were full of broken glass and I could barely move the muscles in my legs. It went away on its own after a very unpleasant week. I hope your symptoms go away on their own as well!!
Scott FScott FMember
It might be informative to resume the last dose that was okay for you to see if the symptoms disappear. It can take a very long time to regain normal adrenal function. You might have simply exposed a condition that had been masked by the prednisone, but if you've stopped it sooner than your body can pick up the slack that's not so good.

Or Liz's approach might get it over with sooner.

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