Re: Just diagnosed and have questions -- Steroid Warning Network

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Date Posted: 18:45:23 12/05/06 Tue
Author: Melissa
Subject: Re: Just diagnosed and have questions
In reply to: Judy K 's message, "Re: Just diagnosed and have questions" on 05:55:44 12/05/06 Tue

Thank you Judy and Ivy. While I don't wish this on anyone, it's good to know I'm not alone :-). It's also great to hear that you're both improving as you reduce your steroids. Though, Judy, I�m sorry for your setback this morning � hopefully it�s short lived. It must feel great to make advances and it gives me something to look forward to!

Ivy, I'm sorry you're hit with the double whammy need for steroids -- I can't even imagine needing two steroids and then finding out they're doing you more harm than good. I've already tried 6-MP when I first started having problems tapering off of the Entocort. Unfortunately, I had a horrible reaction to it and ended up in the hospital for a week and a half. Given my reaction, my doctor doesn't want to risk me trying the other med in the same class (I think it's Imuran). I believe I've tried all classes of drugs currently used to treat Crohn's (5-ASAs, antibiotics, steroids, immunosuppressants, TNF-inhibitors, plus an assortment of vitamins and supplements) and in a few classes, more than one type of medication. All were taken concurrently with Entocort and all had limited effect, plus problems weaning from Entocort. I started showing a positive response to Remicade in October, so I was hoping that was going to be my answer to getting off of Entocort. But a recent tapering from 9 to 6 mgs about a month ago (in the midst of the Cushing's diagnosis) brought on a slight resurgence of Crohn�s symptoms, so I'm losing hope that Remicade will be my answer. If not, hopefully something else will be on the market soon. (A few months ago, my GI mentioned something about a new drug coming out soon -- hopefully she'll have some more info for me tomorrow.)

You mentioned something about getting cortisol levels checked while tapering off steroids. I'm confused. How do I know if I'm going into crisis other than physical symptoms? My cortisol levels are just barely above 0 now (depending on the time of day, I�m at 0.4, with a reference range of 4-22 and 0.3, with a reference range of 3-17). I�m assuming they can�t get much lower than this without a full-blown crisis. Also, how often should I have my cortisol levels checked? My endocrinologist said to see him again in three months. Is that too long?

Judy, thank you for the link and suggestion for the book. I don�t have enough time tonight to read the website properly. I skimmed a few pages, but I�ve bookmarked it and plan to read it tomorrow. I�ll definitely check out the book you mentioned as well.

Believe, me I�ve thought about seeing another endocrinologist. I�m not very happy with my current one, but it takes about 6 months to schedule an appointment with a new one in my area. When I started to think all my symptoms were connected (September), I set up an appointment to see a new endo, and got an appointment for February. Since I had a prior relationship with my current endo, I could get in right away and took the appointment just so I could get things started. My recent experiences have only confirmed that I don't like this guy. I haven�t cancelled my appointment with the new endo yet, and am beginning to think it�s worth seeing someone else just to see if I like them better.

Melissa

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