Time for a proper introduction

[LEMalarkey]

I figured it was about time for me to do a proper introduction since I've used the boards for information for the past 11 months, and am hoping to get some advice.

I was finally diagnosed with Crohn's in January 2009. I've had GI issues since I was 17, and after a negative biopsy for Celiac in 2003 my GI doctor chalked my symptoms up to IBS and sent me on my way with antispasmodics. I started college shortly thereafter and ended up in the emergency room because the antispasmodics had shut down a portion of my bowel. I quit those immediately and have just dealt with frequent bathroom trips until January of this year when they were affecting my ability to comfortably work. My GI doc where I now live finally performed a colonoscopy, which is how the Crohn's was diagnosed.

Diagnostically I'm labeled as having mild to moderate Crohn's of the terminal ileum, but haven't responded to treatment. I don't have blood, but I do have abdominal pain and cramping, and usually 8 - 10 bathroom trips a day. Since January I've been on Pentasa (4 grams daily), Entocort, Cimzia, and now Prednisone (40 mg daily). I had no relief with the Entocort or Cimzia, so Prednisone was finally added to the equation 2 weeks ago to try and slow things down. I'm running to the bathroom slightly less often than I was 2 weeks ago, but haven't experienced huge relief, I'm still holding out hope that the pred will kick in more though.

Has anyone here not responded well to medication? I was so relieved to finally have a diagnosis to attribute things to, but after almost 10 months I'm starting to feel like I'm never going to have relief. My doctor feels that since I failed on Cimzia it would be highly unlikely for Remicade or Humira to work. Has anyone failed one of the anti-tnfs but found relief with another? I'm just trying to figure out if my case is so unique, or if others have experienced this.

Any info/advice is appreciated!

 

[russem2]

Hey there

I too took Remicade and it worked great for 2 years and then i became sensitized to it. I am about to try Humira to see if it works. Not sure why your doctor is making the assumption that the others TNF blockers won't work, there are differences between Remicade, Humira and Cimzia. Sounds like the Pentaza isn't helping either. I'm surprised he hasn't discontinued the Pentaza and tried you on Humira and 6mp. May be time to look for another doctor if he isn't receptive to change.

Check out this link, it is from the Cleveland Clinic ( #2 in the nation behind Mayo but they are actually more agressive from medical standpoint. Mayo more surgically agressive). This presentation has awesome information from the world's best GIs.
Hope this helps.

 

[LEMalarkey]

Well, his thought process on not trying another anti-tnf is that I never improved with Cimzia to begin with. Apparently if I had had success with it, and then it suddenly failed due to my body producing antibodies against it, his recommendation would be to move on to another drug in the category.

Can you try reposting the link? I can't seem to find it.

Thanks for the info!

 

[imisspopcorn]

Welcome LEMalarkey,

I'm glad you found this forum. I really was surprised you started with Cimizia right off. Each doctor has their own methods I suppose. Don't give up on the other treatments, there is bound to be something that will give you relief. Let us know how things turn out.

 

[russem2]

Here is the link: http://www.clevelandclinicmeded.com/online/webcasts/crohns-disease/medical-therapy/

Also, the reason he started you on a biologic is that Gastroenterologists are now questioning the "Step Up" method in treating Crohn's. The Step Up pyramid consists of Prednisone, 5ASA, Biologics, Surgery. Now they are stating that for moderate to severe cases of Crohn's, the "Step Down" method may provide better benefit and spare the patient the long, high doses of Prednisone. The webcast link i posted above goes over that as well. I reccommend anyone with Crohn's check this out. Really good information.

 

[russem2]

Step Down meaning Biologics first...sorry bout that!

 

[LEMalarkey]

Sorry for the delay in my reply, but thanks so much for posting the link, I'm going to watch it tonight.

I should probably clarify, I started Pentasa as soon as I was diagnosed in January, and Entocort was added in about 6 to 8 weeks later, after I hadn't noticed any improvement. After about 8 weeks on Entocort without improvement my doctor spoke to me about the step down approach and thought I would be a good candidate for it, which is when Cimzia was introduced. I spent 3 months on Cimzia, shifting dosage around to see if perhaps that was part of things, but I really didn't get any better.

Prednisone was the most recent step to try and get things somewhat under control so that work is more manageable, but its not what I want as a long-term solution. My doctor has given me information about a drug trial that I may qualify for (MLN0002), but I'm hesitant and still trying to make a decision. I tried dropping down to 35 mg of Pred beginning on Friday, but my bathroom trips started increasing on Saturday, and were back to the pre-pred rate today, if not worse. Time to go back to 40 mg until my next appointment.

Thanks for the welcomes and advice/information!