My first post - glad to be here. I decided to start here due to recent events.
My story:
Diagnosed with crohns in 1997 at age 20 after 6 months of severe bowel pain, bowel movements and weight loss. Also had major joint pain and swelling. I had episcleritis in one of my eyes (felt/looked like a bad case of pink eye) and it was actually an eye doctor who first suggested I had crohns.
Once I saw a GI and was put on a small dose of prednisone for about 3 weeks. Within days I felt like superman. After that I maintained on Asacol for about 8 years and life was ok.
Fast forward to 2006, I got real sick again (had stopped taking my Asacol - but I feel it would have happened anyways). I had dropped from about 170 lbs to 130. New doctor put me back on prednisone which lasted for about 9 months while I ramped up on Azathioprine. My max dosage of pred was about 60 mg/day. Once again I loved it, gained weight fast, hardly needed to sleep, felt like superman. 2 months in I developed bad abcesses and had to have them drained with a 1 week hospital stay. I felt fine leading up to it - didn't feel anything coming while on the pred until it was really bad.
Finally got off the pred in early 2007 after about 9 months. My doctor had me get a bone density exam and it confirmed osteopenia. High calcium levels led to the discovery of hyperparathyroidism in 2008. All my doctors claim there is no connection though.
From that point on I maintained on 100 - 150 mg of Azathioprine and felt good for a few years.
Late 2008 the fistula in my ileum got bad again leading to seepage into my blood. that was bad, finally had resection surgery of my ileum and about 5 inches of small and large bowel on either side. Never went back on pred though I'm still on Azathioprine.
Life has been fantastic since then up until recently. For the last 6 months I've been flaring. A small bowel follow through confirmed active disease much higher up in my small bowel. I'm working through that now.
More on point - this flare motivated me to follow up on some pain I've been having in my left hip. An MRI confirmed early avascular necrosis. For some reason this scares me more than Crohns - guess I'm used to it. I'm still functional but long walks can end up being very painful. It's still early in the diagnosis but all doctors seem convinced it's due to prednisone. I don't understand why it took this long to manifest, I haven't taken any pred for 5 years. I also repeated my bone density exam - awaiting results.
So that's why prednisone scares me. I had very few of the common side effects. I felt incredible on it and was even able to ween off of it relatively easily. But while I was on it I still managed to develop bad abcesses while feeling great. As of now it also looks like I also got one of the rarest and worst side effects - avascular necrosis. I'm 35 and not happy that I'll likely need a hip replacement in the next few years.
I know a lot of folks are on pred and I'm very happy it helps them. But it's a very serious drug, so please be cautious. If you have any sort of hip/knee/joint pain - get it checked out soon.
Thanks for listening.
My story:
Diagnosed with crohns in 1997 at age 20 after 6 months of severe bowel pain, bowel movements and weight loss. Also had major joint pain and swelling. I had episcleritis in one of my eyes (felt/looked like a bad case of pink eye) and it was actually an eye doctor who first suggested I had crohns.
Once I saw a GI and was put on a small dose of prednisone for about 3 weeks. Within days I felt like superman. After that I maintained on Asacol for about 8 years and life was ok.
Fast forward to 2006, I got real sick again (had stopped taking my Asacol - but I feel it would have happened anyways). I had dropped from about 170 lbs to 130. New doctor put me back on prednisone which lasted for about 9 months while I ramped up on Azathioprine. My max dosage of pred was about 60 mg/day. Once again I loved it, gained weight fast, hardly needed to sleep, felt like superman. 2 months in I developed bad abcesses and had to have them drained with a 1 week hospital stay. I felt fine leading up to it - didn't feel anything coming while on the pred until it was really bad.
Finally got off the pred in early 2007 after about 9 months. My doctor had me get a bone density exam and it confirmed osteopenia. High calcium levels led to the discovery of hyperparathyroidism in 2008. All my doctors claim there is no connection though.
From that point on I maintained on 100 - 150 mg of Azathioprine and felt good for a few years.
Late 2008 the fistula in my ileum got bad again leading to seepage into my blood. that was bad, finally had resection surgery of my ileum and about 5 inches of small and large bowel on either side. Never went back on pred though I'm still on Azathioprine.
Life has been fantastic since then up until recently. For the last 6 months I've been flaring. A small bowel follow through confirmed active disease much higher up in my small bowel. I'm working through that now.
More on point - this flare motivated me to follow up on some pain I've been having in my left hip. An MRI confirmed early avascular necrosis. For some reason this scares me more than Crohns - guess I'm used to it. I'm still functional but long walks can end up being very painful. It's still early in the diagnosis but all doctors seem convinced it's due to prednisone. I don't understand why it took this long to manifest, I haven't taken any pred for 5 years. I also repeated my bone density exam - awaiting results.
So that's why prednisone scares me. I had very few of the common side effects. I felt incredible on it and was even able to ween off of it relatively easily. But while I was on it I still managed to develop bad abcesses while feeling great. As of now it also looks like I also got one of the rarest and worst side effects - avascular necrosis. I'm 35 and not happy that I'll likely need a hip replacement in the next few years.
I know a lot of folks are on pred and I'm very happy it helps them. But it's a very serious drug, so please be cautious. If you have any sort of hip/knee/joint pain - get it checked out soon.
Thanks for listening.