Posted 5/29/2011 11:41 AM (GMT -6)
I will give you my experiences with both Humira and Remicade, since they are similar medications.
Humira (2008-2010)-I was hospitalized in early April of 2008, and my GI, who was new to me at the time, came to see me and gave me information about a drug trial for Humira. It was hard to find qualifying people, but I qualified, so I went ahead with it, and within a few days of my release was ready to start. I was in really bad shape at that time. My severe flares=anywhere from 10-20+ trips to the bathroom a day, most of those being blood only. I got the loading dose of 4 injections (it was a double blind study, but it stung going in, which they said was a good sign for me), and literally the next day I had NO blood. (I had gotten down to about 4-7 bloody BMs/day with the IV steroids, and was on 40mg oral after getting out of the hospital) I started having basically one normal BM/day after that, even after I tapered off of steroids. I went back to living life as normal, and honestly didn't realize that this medication would eventually stop working for me.
I had a minor flare the following spring in 2009, but rectals got it back under control. However, we were in a highly stressed time of our lives, and by the fall, i was having more and more problems. It was NOT all of a sudden that is stopped working. I increased my rectals, but being in a trial, I was very limited as to how much I could try. So by January 2010, they bumped me to a weekly injection schedule (by this time I was done with the double blind portion of the trial), but said the only other option was pred without being kicked out of the trial. Eventually I went on pred again,but it was too late. I ended up in the hospital again in Feb 2010. Things were not *quite* as severe the second time around. (I didn't need blood transfusions the second time, but the IV steroids didn't help as much either)
Again, it was a gradual downhill for me on the medication. I did have warning that it was going south-but I didn't have a ton of options within the confines of the drug trial.
Remicade (2010-present)-so my GI had wanted to get out of the study and go on 6mp. He felt it would could provide a longer lasting and more stable remission for me in the long run. But because things ended up getting bad more quickly at the end (that is how severe flares tend to go for me-I have to nip things in the bud before they escalate), there wasn't time to get me on it and see how it worked a few months down the line. So I pushed him to start me on remicade, and he agreed. I expected it to be exactly like Humira had been, but it wasn't. I had my first infusion in the hospital, and I felt a little better, but was not in an immediate remission. It took 3-4 infusions for me to really reach remission the second time around. But I did get there, and again, I am at about 1 BM/day as my norm. (with both drugs, I had days I would go 2-3 times, but again, no blood or urgency-they were normal. But typically, I go once a day) So far, so good with the remicade.
I will say though, there have been other changes along the way as well that I believe to have been helpful. I learned my biggest triggers. 1)antibiotics. I avoid them like the plague. 2) stress. A KILLER for me. It is tough, but I am much better now at managing my stress than I used to be. I had just not put it together before. 3) diet. This is something I fought big time. But I started seeing an integrative doc, and was tested for food allergies and sensitivities. I found out that I am highly sensitive to casein, the protein in cow's milk, so I pretty much eliminated dairy. Not 100%-it isn't an allergy, just a sensitivity, but I noticed a big difference in the way I felt. Now being pregnant, I have a bit more leeway with the dairy foods, but I still need to be cautious. And I don't think diet alone is enough to put me in a flare or get me out of one, but I think being stable already, avoiding foods that I know for me cause a reaction in my body (thus inflammation) makes sense to keep me stable longer.
My GI also has indicated that adding 6mp or another immunosuppressant along with the remicade would give me a better, longer remission, but again, with my being pregnant, we are holding off on that. I also have some fears about it, having heard of additional complications that can arise as a result of doing the combo of meds. So we'll see, but I know it is an option if need be.
I don't expect remicade to last me forever. But I am hopeful that it will last a long time to come, and I hope that I will get the signs that it isn't working as well so I can do something about it. And not being limited by a trial this time, I know that if i start seeing problems coming about, I will go back to rectals first, up my asacol, and/or add in the immunosuppressant, and go from there. I will definitely be proactive about it so as to avoid hospitalization and prednisone again. But it is always in the back of my mind.
It isn't as common to have a sudden shift though-*most* people will gradually start seeing that the medication isn't working as well, and start with adjusting the dosing schedule. Just be aware and look for any signs of trouble. An off day isn't cause for alarm, but if you start seeing that things aren't going as well, then it is time to examine the medication and scheduling. Some people will notice it seems to wear off and they need infusions closer together. Or higher doses. Or both.
If you are concerned about diet, it is never a bad idea to eat well. Limiting things that are known to cause inflammation or that you know your body is sensitive to is always good thinking. I also don't know what other kinds of supplements you are on (I don't see a sig, but mine doesn't always show up, so I don't know if you have one or not), but adding probiotics is generally a good idea. I have found a couple that really seem to help me. I also have found some other supplements helpful in keeping my stable. Unfortunately, none of these things ever seem to be enough to get me out of a flare (nor are they enough to set me into one if I fall off the wagon), but I know they add to my remission, and I want to stay in remission for as long as possible.
Good luck to you!!!! Everyone reacts differently, so just be aware of how your body is handling things!