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I am a 35 yr old female living with Crohn's disease. My disease has always been classified as mild to moderate. I was diagnosed in 2000. At first I didn't really pay too much mind to it. I just took the pills they gave me and once I got better I stopped taking them. I was only 24 at the time, I was more concerned with the partying. Until, I noticed I kept getting sick. Even worse, I was getting more and more stiff. Then I had a reality check. Came home one day. Laid down and 10 minutes later I could not move. Diagnosis: Ankylossing Spondilytis due to Crohn's Disease. As if one problem was not enough. Then I realized... Oh crap!:eek2:... This was for LIFE!

Fast forward 11 years later. I am currently on Cimzia, 6MP, Motrin 800 and Prednisone. I have tried all sorts of meds, but they all seem to have a negative effect on me. Remicade actually gave me pneumonia. I spent 10 days in the hospital in 2008 being pumped full of steroids. And guess what?! I never felt better:smile:. I had more mobility than I ever had in those 8 years. So doc decided to finds other meds. In the meantime prednisone it was. 20 mg had me feeling great but then the weight started piling on. Now in 2011, I have been on Cimzia and 6MP and yes unfortunately still on steroids. I am slowly trying to wean off of the steroids but once I hit 5 mg for more than a week, I start flaring up! So this is where my battle is. Working hard to finally rid myself of the only thing that has worked for me, those darn steroids! :thumbdown:
 
I don't get stiff, but I ache all over like I have been hit by a truck. And I am so SO tired. I never feel rested, even if I get 8 hrs or 12 hrs sleep, doesn't matter. I have a mild headached constantly and I throw up almost daily. I eat something and 10 minutes later, I either throw it up or I get a major stomach ache. Just got thru with 3 solid weeks of D. It sucks. I hope they find out for sure what I have so I can start being treated for it. What did they do for your Ankylossing Spondilytis? And does it come back?
 

ameslouise

Moderator
Hi Jakira and welcome!

So sorry to hear about your AS and your Crohns. And that you haven't had much luck with the meds other than the pred. We love to hate it and hate to love it but boy, it doesn't the trick, doesn't it?

Have you and your doc decided what to try next?

Good luck - hope you find something that works for you!

- Amy
 

xJillx

Your Story Forum Monitor
Welcome to the forum! I am glad you are doing well on your current treatment, but I too wish you could get off those steroids. Have you and your doctor discussed Entocort? It is still a steroid, but has less side effects because it is localized. Perhaps that could be the first step towards weaning off.
 
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