pred alternative

Hi  I am new to this site and  crohns in general (my daughter was diagnosed in the spring and is currently coming out of her second (vicious) flare with the help of prednisone) but I am not new to auto-immune deseases as I suffer from several. I have been medicine free for 4 years after appox. 15 years on and off pred. (mostly on)   The last time I was on it I just told my doctor I couldn't do it anymore to please try something different.  My deseases were more blood related and I was seeing a wonderful hemotologist/oncologist.  He started me on IV cytoxin on a regular basis (this is a chemo drug) and eventually tapered.  It took a pretty long time-about 3 years but it totally stopped my immune system from distroying me.  Has anyone tried this drug for crohns.  I know that prednisone is a miracle drug but the physical and emotional side affects are atrocious!  Thanks

Hi I have hemolytic anemia (body attacks and kills good red blood cells) ITP-(long difficult to spell disease-but basically body kills off all plateletts so blood will not clot) Thyroid Orbitopothy (attacks the muscles in the back of the eye which causes it to become inflamed, so your vision is blury) and Hypothyroidism. I spent so many years on prednisone I had just had it and asked to please try something. I believe the way some Chemo drugs work is that they basically shut down your immune system. If your immune system is compromised then it can't attack the "good". I know it sounds crazy but I just thought it might have the same affect on IBD's. I just really worry about the effects of all these meds on my daughter because she is still developing, etc. I have also read some things about Lymphoma being caused by some of the drugs used to treat crohns. Anyway---thanks for your reply!

As far as I know, chemo (cyclophosphamide) therapies for Crohn's are still in trial, after having shown very promising results in a small trial of Crohn's patients, and with MS patients.

Ivy.

I believe and my doctors agree that I have likely had AS for sometime. I lived on NSAIDs for years and occasionally went to the doctor for the odd tendonitis type problems that would not resolve. I got a copy of an MRI report from some years ago last year. AS [ankylosing spondylitis] damage was noted on that report. My MD at the time never told me nor referred me to anyone though I had asked for a rheumy referral repeatedly.

I came off all NSAIDs when I was diagnosed with Crohn's. Within 8 months I was unable to navigate without a cane. I am not saying this will happen to your daughter! I had likely had AS for over 20 years. I had enthesitis in practically every tendon plus some significant hip problems from the AS. They started me on Remicade and it was amazing. I got rid of the cane, canceled the hip surgery they had scheduled and no longer needed help dressing. Remicade also put my guts into remission. Remicade gave me life back!

After 2.5 years I had to get off Remicade. Things went down hill in terms of my joints and tendons. I navigate life now okay without assistance. I do get flares in my tendons and SI [sacroiliiac] joints that require steroid injections. I got bad this summer and could only lie down or stand. Riding in a car for more than 10 minutes was torture. Then I had my SI joints injected with cortisone. Made a two day drive and survived. A first for me in years. Now it is wearing off and I can only sit for 20 minutes or so at a time.

Your daughter is young. Many young people with AS do quite well with the right combo of meds. Please don't give up reading about AS. The more you know, the better you can assist your daughter in the decisions that will arise regarding her care. I good, non-hysterical place to learn about AS is at the Spondylitis Association of America's website. There are forums there where you can discuss AS and teens. Several parents there have kids with AS.
SSA