Eva Lou...question about Humira

     Hi Eva!  I went to my GI last Tuesday and he said I may have either had a stomach virus after my third infusion of Remicade OR I could have built up antibodies against it since I am now flaring but not a bad flare.  We won't know for sure until after my fourth infusion on Feb 26th.  Just in case I have built up antibodies, the next step is to try Humira.  I noticed you are on it...any luck so far?  Do you give yourself the injections and how often?

I just started Humira- finished the loading doses last week. During the loading dose time frame, I hadn't seen much, if any, improvement. But the past week or so has been good- since Tuesday, it's been really good- no accidents, the usual # of bm's per day (ranges from 7-3), same urgency. But I've been able to get things out of the way during the AM hours, then I'm fine the rest of the day. I hope it works ok in the long run. I am doing the shots myself- they are the preloaded pens. Super easy to use. A visiting nurse came out to my house & showed me how to do the first one- it's like clicking a pen, basically. I was sort of embarassed that she came out after I saw how easy it was! It does sting, but not bad. I've done them in my abdomen & in my thigh, & prefer the abdomen. The leg hurt like crazy! The loading doses were 2 pens the first day, 2 pens the 2nd day, 2 pens day 14, then you go to maintenance dose of 1 pen biweekly. I had no trouble getting insurance approval either, my GI had to do the usual pre-authorization papers. After being on Remicade for so long, & it obviously failing, I think an insurer will generally cover it. It had been 8-9 weeks since my last Remicade infusion prior to starting the Humira. Hey Capecoddah, I'm a Capecoddah too! West Barnstable for me- who do you see at Beth Israel? I had a great 2nd opinion consult there, with Dr. Peppercorn. Is that where you had surgery? I also consulted with Deborah Nagle, a colorectal surgeon there, about fistula repair. My GI is in Plymouth- I've been lucky with docs, he's awesome. I had surgery scheduled at Lahey CLinic in Burlington, with Dr. David Schoetz, but cancelled it. How long did you give Humira a try before you figured it was doing nothing? I have a 3 month script currently, & will see how things are going when that's close to expiring.

Christine1946:

I have to let you know with me being a longtime person on Humira that it works! I've been on it for almost 3 years and have only had seasonal flares. The loading dose will be quite a shocker due to not used to the pens, but after the firs few times you will get used to it. When or if you start the Humira, you need to remember not to inject in the same area all the time because that one area needs a break. I'm having that problem right now. Every area I use for my pen hurts when it injects into the skin, but it's not that bad. I hope this helps.

eva lou - cool, i have relatives in west barnstable! i live in bourne myself. my main GI's in falmouth but i was also seeing dr. alan moss at beth israel who is very knowledgeable about the newest treatments for UC and recommended humira or a new trial drug called vedolizumab (MLN0002). apparently humira could be FDA approved for UC sometime this year and vedolizumab in 2012.

anyway i only tried humira for three months; i was hoping for a miracle remission like remicade gave me years ago, but i didn't see much improvement, was in too much misery to try it any longer, and opted for surgery. my j-pouch procedure was done by dr. peter marcello at lahey clinic. an awesome guy (i've heard great things about schoetz too) and everything about lahey is fantastic if you eventually have to go that route. my surgeon did say that my colon was basically beyond repair and that's why meds like humira weren't effective for me.

i am confident though that humira could've given me the same remission i enjoyed with remicade if i had tried it earlier. there's very little difference between the two drugs.

oh i know eva lou, i had my pre-op testing for takedown surgery on january 20th and had to leave my place at 5:45 to make sure i got to lahey in time for my 8 am appointment. but i could drink coffee on the way up! i couldn't do that with UC without needing to find a bathroom soon after haha

and yea i remember my GI telling me that people on remicade should try about 5 infusions to see whether it's truly effective or not. in some cases it takes that many infusions to finally kick in and do its job.