My son was diagnosed with Crohn's 6 years ago and we have had some experience with steroids, including working closely with an endocrinologist to taper my son from steroids. The information I have to share is based on those experiences and the advice we received from my sons' doctors.
Obviously, I am not a doctor and you need to check anything I share with your own doctor and follow his/her advice. In my own personal experience weening from pred (not for IBD) the docs I was working with were not endocrinologists and were ignorant about helping their patients successfully ween who were having trouble and had no problem with me using what I had learned from my son's endocrinologist to guide my own pred ween.
It is not normal for someone to be on steroids, either prednisone or budesonide (entocort) for 12 months.
Most people with Crohn's in this day and age are not on steroids for that length of time because there are other meds available to treat their Crohn's. Due to the severity of the side effects of prednisone and the fact that prednisone does not promote healing (where the other meds do allow healing to take place) the current standard of practice is to move patients to immune modulating or biologics quickly if they fail to get into remission on a short course of steroids.
Some people fail these other drugs and have no other choice. Not many people are in this group but they do exist so there are a few folks out there who have to live with the situation. But they are not typical.
Based on our experiences, the GI's we worked with would not say it is "normal" to have bloody stools during a taper.
There may perhaps be a little blood when you wipe but a bloody stool is not normal and if you have persistent blood when wiping then you need to report that to your doctor for sure. These would usually be signs that you are tapering too fast or that you need to step up to an additional med like 6-MP, methotrexate or a biologic like Remicade.
You can get side effects like moon face, diabetes, increased appetite, psychosis/mood swings and vulnerability to infection within a matter of hours to days once you start taking prednisone.
It is a VERY powerful drug that immediately suppresses all inflammatory processes in the body. It is used to rescue people who are on the brink of death. Many people only experience these side effects in mild forms. Some people have extreme reactions. It is unpredictable and inconsistent from one time to the next so there is no guarantee that the way your reacted to pred the last time is how your body will react the next time you have to take it.
Anyone who has been on steroids for more than 3 months (according to the AGA or American Gastroenterological Association) should have their bone density checked (basically they should have a DXA scan).
Oral prednisone should be taken in a split dose. Half should be taken in the morning and half in mid-afternoon. Taking it any later than mid-afternoon is likely to interfere with your sleep cycle.
When you start to ween, the endocrinologist told us that the dose should be reduced by alternating between reducing first the afternoon and then the morning dose. So if you started at 40 mg and you drop by 5 mg a week until you get to 20 you would do:
week 1 - 20 mg am; 15 mg pm
week 2 - 15 mg am; 15 mg pm
week 3 - 15 mg am; 10 mg pm
week 4 - 10 mg am; 10 mg pm
According to my son's endocrinologist, weening should be done slowly once you reach 20 mg.
The body normally produces about 20 mg a day of corticosteroids. When you take prednisone your body is likely to naturally stop making it's own supply and if you stop too quickly your body may not start making enough. This is called adrenal insufficiency and can be a life-threatening condition if it is severe enough. It is rare but real. for more information on that you can go to
http://arthritis.about.com/od/prednisone/f/withdrawaltaper.htm
Once you reach 20 mg, your taper should slow down and you should taper by as little as 1 mg a week, continuing to alternate between am and pm until the pm dose is zero. The AGA recommends tapering by 2.5 mg/week. So an example might be (all these are mg):
week 5 - 10 am; 7.5 pm
week 6 - 7.5 am; 7.5 pm
week 7 - 7.5 am; 5 pm
week 8 - 5 am; 5 pm
week 9 5 am; 2.5 pm
week 10 2.5 am; 0 pm
week 11 2 mg am
week 12 1 mg am
week 13 discontinue
At any point where symptoms recur you would return to the previous weeks dose for 2 weeks and then try weening again but at a lower rate. So if you had dropped your dose by 10 mg you would instead drop by 5 mg.
The lovely Pred, huh? Gotta love it and hate it! I was on it for 6 months and tapering off was hard. Interesting what you said about the dots on your legs, Ashley. I started getting a few itchy coin shaped patches on my legs a few months before my stomach issues started. They too disappeared when I started on Pred, but flared up badly again recently and turns out it's Psoriasis.
