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Does this sound a logical taper

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Crohn's Disease
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Posted 1/18/2014 8:29 PM (GMT 0)
I'm a steroid dependent person. After 2 years on Entocort, I have to withdraw it. More than a month ago, I went down to 3 mg and suffered from severe withdrawal symptoms: stiffness all over my body and muscle ache. So, my GI gave me an injection to stimulate the adrenal glands to produce cortisol and told me to taper Entocort more slowly than this. I was supposed to go down to 3 mg at the beginning of January but he refused as I'm flaring up these days. I told him I'll go down to 4 mg but it didn't sound feasible for him and said to keep up my 4.5 mg dose. The problem is, based on his advice to go down to 3mg, I don't have enough Entocort. I get it from Australia and the friend who purchases it already got it and can't get more. She has already travelled.
Does this tapering system sound logical: 6mg on the first day, 3 mg on the second and other 3 mg on the third day; total: 12 mg/3 = 4 mg. Is this feasible or should I go down to 3 mg immediately?
Posted 1/18/2014 9:03 PM (GMT 0)
I'm having a hard time understanding the logic of your plan to taper. Does your GI say that the average of mgs over a few days counts? I didn't think you could average out your dose like that. I have always taken it based on a daily dose. In fact with entocort, I don't see how you can split the doses to make 4mgs or 4.5 mgs because they are 3 mg pills. How many pills do you take on a daily basis? Two? If so, then taper down to 3 mgs. Please explain how you are on 4.5 mgs/day. Then maybe I can advise better.
Posted 1/18/2014 9:11 PM (GMT 0)
Hi Stef. I take one capsule 3mg on one day and the other day 6 mg 92 capsules). If you add 6+3=9. If you divide 9 by the 2 days, you get 4.5 mg. It was another doctor who suggested this kind of taper when I was on pred. When I told my GI about it, he approved of it.
Take care :)
Posted 1/19/2014 3:26 AM (GMT 0)
Ok, I see what you mean and you explained that in your first post, so my apologies for not getting it. I guess it just didn't register. I didn't know that was a form of tapering. Based on that rationale then yes, I would say your proposed plan to taper is logical.

Being steroid dependent myself, I'm wondering if a more steady dose would be a better way to taper. I know that entocort only comes in 3 mg pills, but do you think that the burst of 6mgs followed by the lower dose of 3 mgs and this form of dosing being repeated is too much of a spike for your adrenal gland? My concern would be that in the end it doesn't really average out, but rather yo-yo's the amount of steroid received by your body and might make it harder to adjust as you try to wean and let your adrenal gland kick back in. I know the purpose of entocort is to act locally and therefore, give you the benefits of steroids while avoiding the systemic effects prednisone can cause, but....

Do you think it would be more helpful for you at this point to go back to regular prednisone and taper by 1 mgs? That might allow your adrenals the opportunity to take back over instead of going through the spike-and-drop of the entocort dosing.

I'm having the same kind of dilemma as I am on both entocort AND pred right now. I would like to get off the entocort, but I've been flaring so I feel for you. I really do. I hope you can taper without any trouble. It sure is quite challenge!
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