I waited until I got my second dose under my belt before posting, since I wanted to see how things panned out. That literally happened this morning, so tomorrow I may be posting an amendment recanting everything, who knows. However, I know I had a ton of questions and did a ton of Googling before my first Remicade infusion session, so I thought I’d share my experience.
I was already familiar with the center’s IV Infusion Unit from the rounds of IV steroid infusions I enjoyed there over Columbus Day weekend. (5 days straight, even the holiday itself. Good times.) It helped to be in a familiar environment, and to know (at least by sight and needle-sticking prowess) the techs and nurses there. All in all, the Remicade experience was (almost) entirely painless, save for the “Where did your vein go it was just here a minute ago?!” digging. Even that wasn’t that bad.
I had to pick up a waiver from my GI’s office first, signing my life away for the myriad complications (Hepatosplenic T-cell lymphoma) and infections you can get from this drug, since it’s such a powerful immunosuppressant. I’m surprised it doesn’t give you hantavirus given everything else you can contract. (TB anyone?) Anyway, I checked in, handed over my waiver, got weighed and had my vitals taken. They directed me to a chair and prepped me with Tylenol and Claritin (I was offered the option of Benadryl but declined because I’m already a narcoleptic thanks to the insomnia.) I got some saline while they called in the prescription, it arrived, they hooked me up, and about 2.5 hours passed while the meds dripped quietly into my vein. I napped, did some reading, even used the restroom (just unplug your IV unit and you’re free)!
During the first session I became exceptionally drowsy, but I didn’t know at the time if that was the Claritin (non-drowsy drugs still tend to make me drowsy, just watch me on DayQuil). I stayed massively fatigued for another 2-3 days following the treatment, so I now credit the Remicade with that side effect. It did eventually pass and I returned to my normal level of fatigue. Today I became tired right at the end of the session, but not nearly as badly. I recognized it because it’s a seriously sudden onset of exhaustion where your limbs go to lead and your eyelids weigh five pounds each. Otherwise, however, I don’t recall experiencing anything new or negative that I can attribute to the treatment, intestinal or otherwise. (I’m having vision issues but they don’t believe–as of now–that it’s related to the Remicade).
Which brings me to my next topic. Changes? Improvements? Nothing so far for me. However, I’ve been told by a couple of doctors that patients typically don’t start to see “a difference” until after the second dose. That’s when, if they’re going to, things will begin to shift, though it can still take a couple of weeks. Not seeing anything outwardly doesn’t necessarily mean nothing is changing for the better inwardly, either. I’m trying to stay positive by visualizing the little mouse proteins placing a rag of Remicade over the nose and mouth of my immune system and knocking it out for a bit. Maybe locking it in a warehouse where nobody will find it for a little while, not until I have a shiny, healthy pink colon again. A girl can dream, anyway.