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Coming off of steroids after 11 years

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Crohn's Disease
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Posted 5/19/2022 11:41 AM (GMT 0)
The problem of my rectum is still persistent. Saw my GI and he increased the rectal medication: pentasa enema in the morning and Trud enema at night. I asked him about the bruising and he said that steroids cause it and that I have to come off of them ASAP. I told him that for years I have failed to go less than 1.2 mg of budesonide and he insisted O have to stop it. How can I do that? I follow a very slow tapering routine but whenever I go down to 1 mg, I relapse and have to up the dose again.
Posted 5/19/2022 4:57 PM (GMT 0)
I wish I had some words of wisdom to help you get off of the steroids. I haven't heard of anyone being on them 11 years. You have become steroid dependent & shame on the drs for doing this. The longest I have ever seen is 12 months in rare circumstances.

The connection with steroids & bruising makes sense, I didn't know you were on steroids. I am thinking you are in Canada & I do not know how their healthcare system work. I have read that enemas are about 10% systemic, perhaps you can ask your gi or even your gp to refer you to an endocrinologist for a consult.
Posted 5/19/2022 11:25 PM (GMT 0)
Have to agree with @straydog. Your GI shouldn't have had you on a long term steroid treatment. I too have never heard of this. I do know of someone that used low dose Pred. (5mgs daily), for several years though.

Hopefully, you can resolve your dependency, and get onto some other treatment option that will work for you. Wish I had some helpful advice.
Posted 5/23/2022 4:30 PM (GMT 0)
Hello everyone, I don’t know whether 1.5 mg or 1.2 mg of budesonide is considered to be a low dose or not but I admit it I have steroid-dependency. I’m trying my best to come off it and hope it works this time.
Posted 5/25/2022 2:55 PM (GMT 0)
Hi minnie. Prednisone comes in 1mg pills and provided they're not extended release (I don't think pred has an extended release version anyway, but I'm not entirely sure), you can safely cut them up into even smaller doses.

That might help with bridging the gap when you get to a really low dose.
Posted 5/27/2022 1:25 PM (GMT 0)

straydog said...
I wish I had some words of wisdom to help you get off of the steroids. I haven't heard of anyone being on them 11 years. You have become steroid dependent & shame on the drs for doing this. The longest I have ever seen is 12 months in rare circumstances.


I was on them for 2 years and not just once

Minnie, I hope you've had a dexa scan
Posted 7/24/2022 5:56 PM (GMT 0)
Hi Minnie, sorry to hear you're having on going problems. I was on low dose prednisone for almost 30 years on and off, sometimes given a larger dose when I was in a flare. It kept me in remission. about 12 years ago I decided to wean myself off. Yes, I had some withdrawal symptoms but because I expected them, it was tolerable and it wasn't so bad. I have been off for about 12 years now, and since I did come off, I came out of remission, and had 3 surgeries since and a whole lot of hurt to follow?. I wish I would have stayed on it. I'm on Entyvio now, it helps some, but it sure isn't anything like prednisone. Even though prednisone is one of those short term Rescue drugs and not an ideal one for everyone, nor to stay on long term, because of reported side effects, which I was lucky enough not to get, it gave me a life and it worked the best for me. Incidentally, it was the only drug that also gave me relief with the rectal and anal issues caused by the crohn's. I have been suffering since. Now with the new biologics, my new GI will not prescribe prednisone, and told me to use Vaseline for the anal issues which does little or nothing to help.

Post Edited (dorri) : 7/24/2022 11:14:27 AM (GMT-7)

Posted 7/27/2022 6:35 AM (GMT 0)
I was on prednisone consistently in my 20's and 30's until humira came out. I used an every other day dose, but never came off of it completely until humira. It was very hard getting off the stuff. I had to get the 1mg tablets and go real slow from there.

My adrenals don't work as well these days. I do not respond to stressful events properly at all anymore.

I can be off steroids completely for a while as in a month or two at most before I start to have problems like severe itching, can't sleep at all even with ambien, valium, nothing works. The worst part is bad anxiety and fear coupled with obsessive worrying about stuff that makes no sense and I otherwise would care less. But this in and of itself will trigger my crohns to flare up. When I am like this sometimes just taking a couple days of hydrocortisone will fix this completely. I fall right to sleep when I take it.

I seem to get by with taking budesonide for a week or two then tapering down, and off of it for a month or two. I prefer it because the side affects are so easy to deal with and Enough of it is absorbed to keep my body happy with cortisol, and I don't have these problems. It is just really nice to be off steroids of all sorts for a while even if only a temporary vacation so I always sort of loathe having to take them again just to fix this.

Most likely I have some form of addisons. So keep that in mind as you go down this road.
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