I figure it's time to jump in on the forum, so Hi all! It is great to read everyone's posts, the support here, the venting, just all around fantastic. I've been on Remicade twice (never failed, just became inconvenient to travel 2 hours every 6 weeks for infusions), officially failed Humira after a year and a half of repeating infections, extraintestinal manifestations of crohn's (EN), and flaring almost as bad as when I was first diagnosed. I'm a bit irked since my GI doc. didn't explain that as you work your way through biologics they are less likely to work for extended periods of time the higher # of them you're on. At 3 for 3 my hope for Cimzia faded a bit after hearing that, but I'd already had the first loading dose and feel committed to give it a solid chance.
I have never been in remission since diagnosed 8 years ago but Humira was the most successful and while on it I was able to complete my college degree with hiccups along the way, but made it all the same.
I've completed all 3 loading doses with no noticeable improvement and my first maintenance dose is in 2 weeks. I expect it to take some time due to the extent of active disease. Prior to starting cimzia we did a good thorough look at my insides to be sure the humira had failed and there wasn't something else happening.
Essentially, there's inflammation, ulceration and strictures from just above the stomach, in stomach, throughout small intestine, ileum is strictured to the point where a camera does not fit through, and patches of large intestine is ulcerated with one large mass that looks like cancer but is apparently just a nasty bit of crohn's according to biopsies. Our hope going into Cimzia was to decrease inflammation and pray that the size of the growth in my large colon decreases since technically it's inflammation as well.
After my first loading dose I noticed a decrease in my extraintenstinal manifestation (erythema nodosum - EN) and was able to walk/ practice yoga for the first time in ages. I was thrilled! But cimzia isn't supposed to work that quick so most attributed it to having a good week that lined up with my first injections.
Days before my 2nd loading dose the EN flared where I couldn't walk for 3 days again (this had been happening off and on every couple weeks for the past 10 months and there are no underlying causes other then crohn's/ inflammation levels). My Crohn's symptoms spiked, but this was during a move to a new state 1000 miles away and traveling/ moving stress certainly may have exasperated things. I wasn't able to keep down food - I'd eat and immediately vomit if I was lucky enough to even swallow anything. What food I did keep down came back out and bm's increased from 2-3 times a day to 5-10. Pain and cramping would wake me up periodically throughout the night and my weight dropped 10 lbs, down to my weight at point of diagnosis (about 25-30 lbs underweight), in 3 days. This was odd because while I'd been flaring for about the past year with acute signs in my digestive tract I hadn't been experiencing a huge increase in number of bm's, stool consistency, etc. Mostly i'd just been struggling with EN, terrible nausea, cramping/ bloating, and occasional pain after meals that would leave me immobilized for 15-45 mins. at a time. I went to my Dr. and was tested for c-diff. No c-diff so she put me on 20 mg Pred. the one med. that never fails to make an improvement - for better or worse. Over the past 8 months we've done several weeks of low doses pred. w/ slow tapers to keep the EN managed so I could continue working at the time.
After getting the OK to go forward with my next loading dose I took my 2nd dose 2 weeks and 2 days after the first. I was feeling a bit better, but I'm guessing it was the pred. kicking in.
After the 3rd loading dose coming up on 2 weeks ago I began to experience severe pain upon bm, cramping that would wake me up throughout the night, and a lot of blood, but nausea and overall pain in the torso was down - the feeling of a waistband touching my belly didn't make me want to scream anymore. After talking to my Dr. she doubled the pred. so now sitting at a 40mg dose.
I'm getting the sinking feeling that any improvement I've been feeling is solely due to the pred. Which is fine for now - frankly I just want to have some semblance of life back again, but it is not a long term solution. At this point if I could get a solid year out of Cimzia to manage symptoms I would be overjoyed. I get the feeling my Dr. doesn't have the utmost belief in Cimzia for me.
Just needed somewhere to get all that out there. It's been eating at me more then I'd like. If anyone has any thoughts or personal experience to share I'd love to hear it. Especially wondering how long it took for Cimzia to kick in for many of you, and how exasperated conditions were before you began taking it. etc.
Fingers crossed this med works and you'll be seeing me on this thread/ group for a long time yet!
but am not and still losing weight. Anyway, DX..moderate active Crohns in terminal ileum. Doc is setting me up for every two week injections ($5300/mo) . Guess we'll see what copay does. 
