My Crohn's Diaries

Okay, I’m back with a three-month update since starting Humira. I’ve got good news and bad news. First, the good news!

Humira is working! My inflammation markers are all down into the normal range except calprotectin which is much, much lower than it was before. So, yay! I’m feeling better, eating more, and gaining weight. All great things.

However, the bad news. I’ve been getting red, raised welts after my injections since I started doing them three months ago. At first, the welts were small and flattened out in a day or two. I tried taking antihistamines, cortisone cream, ice, and nothing seemed to help. Each injection, the welts got bigger, warmer, itchier. I mentioned them to my Humira ambassador who…sort of ignored my concern so I figured that was normal and went about my life. (I also probably didn’t do a great job explaining the issue and I’ve only spoken to her over the phone so it’s not like she could see what it actually looked like.)

When I went in to see my gastroenterologist for the three-month follow-up, though, she was concerned about the welts more than anything. Which surprised me! I thought the constant sore throat, dry dose, and flaky hands would have caught her attention, but nope! The welts I had shrugged off were the thing that set of alarm bells.

She asked if they were getting better or worse, how many doses I’d had, and referred me to a dermatologist. If we couldn’t get the welts to stop or at least shrink, she said, we’d have to switch medications. Typical. I find a medication that works and my body finds some other way to sabotage me.

So, I scheduled an appointment with a dermatologist for the day after my next injection so they could see the welt in the flesh. I didn’t take any antihistamines, put on any cream, or even ice my leg when I did it. I wanted them to see the real deal. The real deal, it turned out, was worse than ever, at least three inches by three inches and sort of bubbling up at the edges with smaller blister-looking bumps on top. Apparently the antihistamines and cream and all was actually helping. My reaction was just worse than I thought.

The dermatologist said if the site injection reaction is larger than a quarter and stays for longer than 24 hours we have a problem. An allergy or an intolerance is the phrasing she used. Well, lucky me because I checked both of those boxes. And the problem, really, is that the more times you expose yourself to something you’re allergic or intolerant to, the worse the reaction gets both in size and in severity. She said, not unseriously, that it could become an anaphylactic situation. Which is, obviously, not ideal if this is a medication I need to be on for the rest of, well, my life. So, she prescribed me a steroid cream and an antihistamine and icing regimen to follow before and after my next dose to see if we can calm this welt situation down.

I’m going to try it for a dose or two and see if that helps. If not, it’s back to the gastro to talk next options. She mentioned Remicade infusions as a potential next option. Are any of you on Remicade? What are your thoughts?

Also, if any of you out there are getting welts after you do your injections, see your doctor! Especially if they’re larger than a quarter and last more than twenty-four hours. I wish I knew that nifty reference point and I would have asked my doctor about it sooner.

My next dose is Christmas day. Lucky me! I’ll be doing it with people around just to make sure I don’t have a severe reaction now that that possibility has been put into my head. Wish me luck!