Sudden stop to Entocort

[Kip1]

Hi all

When I saw the gastro doc on thursday it was decided that due to the crohns in my TI thickening & narrowing the food I was eating was starting to back up & thats what was causing all my upper abdominal pain. I was told I needed surgery & have to start on a mushy diet & to stop entocort. I had been reduced to 2 per day due to lack of sleep but as I was worried about the surgery I never questioned just stopping them altogether as my doctor suggested.
Now I find all my muscles ache really bad & even under my skin feels like I am badly bruised. I have a terrible headache & my throat hurts but not like when you get tonsilitis & I feel really sick & tired. Im not sure what to do or how long this will last.
Has anyone else had this problem & if so how long should I expect it to go on for. :facepalm:

 

[Kip1]

I forgot to add the indigestion & heartburn isnt as bad as it was now I have stopped the entocort.

 

[Kit]

I am not sure about the symptoms of stopping, but I have always weaned myself off of it. I am sorry that you are going through this, try checking a medical drug website that may tell you of the symptoms of not weaning off it and how long they may last. Search some of the threads on the Crohn's forum and these may give some answers as well.

Hope you feel better!
Kit

 

[kllyeve]

How long where you on it??

Entocort is a steroid that does suppress the adrenal glands. So when you stop it suddenly, the side effects are from the adrenal glands having to "wake up" quickly. I was told NOT to suddenly stop the Entocort. I am actually tapering off REALLY slowly as I am having very bad side effects from the adrenal suppression. I was ok going from 9 mg to 6 mg per day, but when I went from 6mg to 3mg per day all hell broke loose and I felt like a bus had run me over - no energy, lots of abdominal pain, lots of achy muscles, brain fog so bad I couldn't answer the simplest of questions some times and moody and bitchy like the worst PMS ever.

The only way out of the issues, is to slowly taper off. Phone the GI, tell them you are having these symptoms and ask to go on a slow taper. Right now I am on alternating days of 6mg, then 3 mg, then 6 mg - I am to do that for two weeks and then go to 6, 3,3,6 for two more weeks and then 6,3,3,3,6 and so on and so on. Even if I didn't know what mg I was taking that day - I could still tell you which is a 6 day and which is a 3 day just by how I feel physically. I was on Entocort for 8 months so the longer you are on the worse the coming off will be.

And yeah, the heartburn is way less now that I am not on 9mg.

Good Luck - make sure you tell your GI what is going on!!

 

[Jennifer]

Every time I was on Entocort it was only for 3 months at a time. Anytime over 3 months should be tapered (so says all the GI docs I've seen). Less than that, it is possible to stop cold turkey as it doesn't affect you as much as Prednisone (which you should usually taper if you've been taking it for over 10 days). Let your GI know how you're feeling and see if they suggest a slower taper and some of your symptoms if not all, should go away.

 

[Kip1]

Hi thanks for your suggestions.
I have actually come down with a virus like Flu or similar so could have been a lot to do with some of the symptoms. I only had Flu 2 months ago so gutted I have it again. Had the flu jab for 1st time last year & had a flu like virus 3 times since then.
I certainly wont have it again next year.