Over the past few years, I’ve noticed that the number of days I spend too tired to work has increased. I also find that I can work fewer hours per day on average than I used to. This past winter has been especially hard: several times I was too tired to work for almost a month at a time. What would happen is that I would feel increasingly tired as my Remicade wore off — a normal occurrence. Then, I’d get Remicade, and while going through steroid mania and withdrawal, I’d catch a cold when I was at my most immune-suppressed. Instead of feeling more energetic and able to re-engage with the world, I’d then spend at least another week feeling sick and wiped out. Being out of commission for 3+ weeks at a time is not just demoralizing, it’s also disorienting — it takes a while to figure out where I left off each time and to get back into the swing of things. And every time it happened (and every time it continues to happen) I get awfully depressed at the thought that I don’t want to spend my life like that, unable to do things I enjoy or to support myself financially. It’s really unpleasant.
Some of my friends — and now my relatives, after they witnessed steroid withdrawal for the first time a few weeks ago — have asked me why I continue to use Remicade (which, for me, necessitates a steroid pre-med) when there are other treatment options that generally don’t require any pre-med (i.e. Humira, aka adalimumab). Being able to receive treatment without a steroid pre-med would give me back several days every month of functional time, at least in theory.
Well, the answer for me is that there are limited options for the treatment of Crohn’s. Right now, there are two main drugs, the biologics Remicade (infliximab) and Humira. There are a number of other treatments available that I haven’t yet tried, but they’re much less common and not as well studied (i.e. Cimzia (certolizumab pegol), Simponi (golimumab), Tysbari (natalizumab) and Entyvio (vedolizumab), not all of which are easy to obtain in Canada). If I stop taking Remicade but don’t do well on another drug or drugs, I can’t ever go back to Remicade because my body will have built up antibodies to it during the time I spent without it. The kind of severe and potentially deadly “serum sickness” reaction that could result if I were to then be exposed to Remicade again is a known complication associated with all biologics. The Canadian Association of Gastroenterology strongly recommends that “patients who have experienced a severe hypersensitivity reaction to a TNF antagonist [e.g. Remicade] should not be retreated with the same agent” for this reason.
I don’t know if any of the other biologics would work for me. If I were to switch from Remicade to Humira, for instance, and it doesn’t control my symptoms, I’ll be in much worse shape than I am now. In fact, it would probably be a death sentence. I really was at death’s door before I started on Remicade.
There’s a lot to dislike about being immune-suppressed, fatigued, and having to go on a mini steroid rollercoaster every 6 weeks, but at least I’m not digesting myself or unable to walk because of joint inflammation.
Until the alternatives get better, I think I’ll stick with the devil I know.