Making the Switch: From Stelara to Remicade

I was three weeks on 40 mg of prednisone before my flare symptoms returned, slowly and inconsistently, but enough that my doctor became very concerned. She’s understandably cautious about using steroids long term. When we’d first made our treatment plan, we’d discussed Stelara and Humira as two good options for biologics. But shortly after my first dose of Stelara, my health declined pretty dramatically and it became clear that I needed steroids to get me through the gap until the biologics could kick in. But, Stelara can take a very, very long time to take effect – sometimes months, if it works at all. And as I became sicker, even on the steroids, my GI made a very rapid decision to switch me to Remicade.

It was a chaotic and upsetting process to negotiate this switch, on the day before the winter holidays, at 3:00 pm, without any chance to see my doctor before she went on break for 2 weeks. I exchanged emails, voice messages and chats with her very aggrieved and very clearly fed up with all my shit nurse for several hours that afternoon about what to do. That kind of medical decision making process is not ideal, but with my intestines getting worse by the day, it was clear that something needed to change. Remicade has the potential of working within several days to several weeks. It’s the longest studied and biggest hitting biologic out there, and is most often prescribed for people with fistulizing Crohn’s, like me. We’d talked about it as an option, and I’d researched it thoroughly at the start of this process, but still, it felt like a gut punch of failure to me. Coupled with the mood swings from the steroids and generally feeling like I was fast approaching a seriously dangerous place with my health despite all my best efforts, I spent most of the evening in tears and feeling understandably lost and vulnerable.

My main concerns were that I was fearful of having one dose of Stelara and then switching to something else without giving the Stelara a chance to kick in. Would I be able to take Stelara in the future? It’s common for people who have discontinued a biologic to develop antibodies to it and be unable to take it safely again. I got an appointment with another GI after the holidays to discuss the switch, and I was reassured that Stelara does not have as much likelihood of developing antibodies as other drugs in it’s class. So, if Remicade stops working for me in the future, Stelara is still something we can consider trying. We discussed my symptoms, my steroid taper schedule, when to start it, how to manage it, and what dose of Remicade to start me at. We settled on 10 mg/kg, which is the highest dose, because the whole darn point of this drug switch was to find something to completely knock out this inflammation and stop the rapid progression of the disease. Start high, hit it hard, and then we can modify as we start seeing how my body reacts. It was a plan, and I was reassured.

The office staff in the infusion center worked utter brilliant magic to get my insurance company to authorize the prior approval for the Remicade over Christmas. I signed up for the Janssen Carepath savings program for Remicade the night before my infusion, and packed a large bag for the infusion center. I’ll post another detailed list about what I take with me soon.

The first infusion of Remicade is often done very slowly, more than usual, since there is a high risk of infusion reactions for first timers like me. I was given Tylenol, to manage the expected headache from the drug, and Zyrtec, to help with any mild systemic reactions I might have. Other than having a very slight and gradual drop in blood pressure over the 2 hrs of the infusion (I was feeling very chill and relaxed curled up under a blanket in my reclining chair, so no surprise!), I felt 100% normal. The nurses monitored my infusion rate and raised it every 15 minutes or so, and I ended up at a faster rate than they expected since I was tolerating everything just fine. I did better this time at remembering to keep my arm flat so that I didn’t crimp the tube in the crook of my elbow and slow the flow.

I felt narcoleptic within about 4 hours of finishing the infusion – a heaviness in my muscles and the general inability to keep my eyes open, like I needed to put tape on my eyelids to stay awake for most of the evening. I slept fitfully, with vivid dreams, which hasn’t been uncommon on the steroids. The fatigue was better the next day but still there, but I was functional and able to watch the kids and get some work done around the house. The brain fog was prominent for about 24 hrs. I felt sometimes unable to put my thoughts into words unless I really made an effort to focus, or switching words when I wasn’t really concentrating on what I was saying for about a day too. That hasn’t been uncommon on the steroids, so I’m unsure how much of that was the general fatigue, and how much was the drug, and how much was just autoimmune brain issues. I was warned quite thoroughly about Remicade’s immunosuppressant effects, and suggested that I avoid large crowds of people for sometime, especially with the first few doses. So we stayed in and had a low key few days, and the fatigue and the aphasia were 100% resolved by the 3rd day.

The amazing thing was that I started to feel better after less than 48 hrs. I woke up the 2nd morning after the infusion and had a normal bowel movement. Like…NORMAL. Solid, but not too solid. No mucus or blood. No diarrhea. No urgency, just an awareness that my intestines were moving. Not spazzing, or cramping, or hurting. Just…working. I’ve had completely normal bowel movements every day since that morning. Though it’s only been 6 days, it’s reassuring and wonderfully relieving to know that something’s working. I’m still sore at times – as though my intestines have been so bruised and damaged for so long that solid food moving through them is not quite something they’re fully ready for, but it’s pain I can manage with a warm bath or a heat pad easily.

I’ve started my step down off of 45 mg of prednisone and I’m hoping that the withdrawal symptoms won’t be so severe with the Remicade hitting the inflammation hard. I’m down to 35 mg so far and doing okay. Wish me luck!