Hi everyone. This is my first post to this forum.
I’m a 48 year old woman who was diagnosed with Crohn’s last January after years of being told I had IBS and basically to just deal with it. Within 5 days of starting 50 mg. of prednisone I was symptom free. Unbelievable! The inflammation in my gut, which I described as feeling like a sack of potatoes, and the accompanying pain were totally gone. I felt like a new person. It had been such a long time that I’d forgotten what normal felt like. It was wonderful. I started on Imuran and after a few weeks I tried to taper off the prednisone. When I got down to 15 mg. my symptoms returned at which point my doctor upped my dose to 20 mg. for a couple of weeks and tapered me off again. I finally got off it at the end of June, after taking it for about 5 ½ months.
The middle of August I went to my g.p. to find out why I was feeling so lousy. Every part of my body hurt. My thumbs were so weak I couldn’t open a jar, my wrists so weak and painful I couldn’t pick up a cast iron skillet, my feet so stiff and sore I shuffled. I told the doctor I felt like I’d aged 30 years over the past 6 weeks. Looking back over my chart he noticed that this had all started about the time I went off prednisone and said I’m having withdrawal symptoms which should go away on their own.
Well, it is now the third week of October and I’m not any better. In addition, it’s a very stressful time for me at work and my Crohn’s symptoms have returned. I saw my gastroenterologist last week and he put me on Cipro for 10 days which didn’t do a thing for me. My blood work shows that the Imuran is at a therapeutic level. He’s recommending a 48 hours liquid diet. I’m not quite sure what that means and I can’t call him because it’s the weekend. Is pureed food, say potato bisque or smoothies allowed?
Anyway, I got sidetracked. Has anyone else experienced these things after going off prednisone? I’m beginning to doubt that I’m going to improve on my own. Are there tests I should ask for? Is it likely that my Crohn’s will settle down once my stress level returns to normal? Any advice is appreciated.
Hobbling around like someone's grandma is exactly right. When I told the doctor I all of a sudden feel old, he asked me what old feels like. I told him that when I drive across town and get out of my car I feel like what my 80 year old parents look like getting out of a car. I sort of will myself to get up and then I shuffle until I get myself moving. Granted, I just turned 48 but please... I didn't feel old at all until 4 months ago when I went off the prednisone. Hope it's temporary!
Thanks for the responses. It's nice to feel less alone.
Diagnosed w/ Crohn’s Disease March 2007 On Azathioprine (generic Imuran), Pentasa, & ENTOCORT
Diagnosed w/ Fibromyalgia May 2007 also on Soma
Also have Arthritis, waiting on a EMG nerve test right now...