Crohn's Disease symptoms worsen with steroid reduction

[AnnieInside]

Hi everyone. I was diagnosed with Crohn's Disease about six months ago. My symptoms start to drastically improve after a short while on 40mg of prednisone. However, as soon as my doctor tapers me off and I get to 20mg, my symptoms start to come back with a vengeance. Are we tapering too fast (5mg per week) or do I need to stay on the 40mg for longer? I'd also read that there's something called steroid dependent Crohn's Disease. How do I know if I have that? I don't know what to do and am scared the prednisone is going to case me all kinds of bad health problems.

 

[mickey]

talk to your doc and see what he may suggest for you. good luck!

 

[Lorimichelle85]

When I taper my steroids I also have problems... I just cannot stay on them those side effects are too bad.. And I get so much fluid and weight.. The taper of 5mg a week should be good because they taper me every 3 days.. I also know that long term use can cause bone loss. You should talk to your doctor about getting bone density screen every now and again.. I hate prednisone it is a devil drug but it is the only thing that helps with my crohns symptoms but then the pred. side effects kick my butt.. Mine are- weight gain, fluid,cant sleep,eat and eat, always hungry, mood changes- I can go from happy to sad in mins., I am meaner-attitude. I also notice my BP goes up and I start to get migranes. I hope you can figure it out. Maybe you could try Entocourt I hear the side effects are not as bad. Good Luck...

 

[Rebecca85]

If you can't taper off the steroids, then you might need a maintenance med to control your symptoms as you come off the steroids. The 5-asa drugs and azathioprine or 6mp are often used for this.

 

[AnnieInside]

Thank you Lori and Rebecca, that makes me feel better.

talk to your doc and see what he may suggest for you. good luck!

Do you really think that's not part of the plan?

 

[mickey]

I would certainly hope that was part of the plan, but your question was somewhat open ended, so I was concerned perhaps you were not going to run that by him/her. Steroids are a scary med and I always like to raise the flag to the doc on that one. Hope you feel better soon!:hug:

 

[Terriernut]

I would also suggest that you need to be on a maintenence med. Even mesalsalizine at the very least. Is pred all that you are on? Quite a few of us have issues when tapering off of pred, it's like the bowel becomes reliant on it, so the taper is slowed down...say by 2.5mg every 10 days. However, the maintenance meds need to be started while you are tapering off of the pred. What has your GI suggested for you so far?

 

[Crohn'sFor Life]

If you really are steroid dependent, maintenance meds will do nothing for you. I was on Prednisone, Humira, Imuran, Entocort and Lialda. Whenever I tapered off Prednisone, symptoms would return. In the end I had to remove my colon.

 

[Terriernut]

No doubt Annie will have to try the other meds. It generally works for most of us! Even some who have been on steriods for quite awhile.

 

[AnnieInside]

Thank you all for your help. I am only on the steroids. I'll talk to my doctor about getting on some other meds as well. That makes a lot of sense to me.

I would certainly hope that was part of the plan, but your question was somewhat open ended, so I was concerned perhaps you were not going to run that by him/her. Steroids are a scary med and I always like to raise the flag to the doc on that one. Hope you feel better soon!:hug:

I'm sorry, my emotions are crazy right now.

 

[mickey]

Feel better!

 

[carolhew]

Annie, the steroids have made me crazy and I'll start my taper this Friday and can not wait! I started Humira two weeks ago and I am hoping for the best. Hope you feel better soon!

 

[carolhew]

Misty, lol I know!!

 

[Terriernut]

Good thing we're not out together on the town Carol!!! Oh dear!!! Hows the treatment for diabetes going? (actually with the pred and diabetes I think no going out on the town?)

 

[carolhew]

Misty, unfortunately no nights out on the town yet! Controlling the diabetes is still a struggle the physician's assistant at the endocrinologist's office is a clueless moron. So I go see her in person on Tuesday, maybe I will have it straightened out by the end of the taper. I have been dehydrated and fell getting into bed and ended up with a nasty bruise on my back, lol. My taper begins tomorrow! 5mg a week, so we can hit the town after May 11th. I figure I will be well enough by then!

 

[mickey]

Not sure if this happens to you, but whenever my brother in law is on prednisone, he gets diabetic. Maybe a correlation for you or worsen your diabetes while you are on it? Something worth considering if problematic.

 

[tots]

I had to go to a low dose of prednisone on taper very very slowly. The high dose fast taper didnt work. I would just have another flare up after a short time. For some reason that confused my first Dr so I got a second opinion and and he was the one to do the lower dose. Now I am on Entocourt and I pray this dosent happen again!

Listen to you body and react quickly so things dont get way from you.

 

[carolhew]

Micky it is definitely the prednisone that has my diabetes out of control! When I am not on this evil drug I have no issues controlling my bg levels.

 

[LindaS]

While the suggestion of a maintenance medication is important, don't forget to take your calcium! I have osteoporosis from taking predisone for years.