Premedications Prior to a Biologic Infusion

I've lived with Crohn's disease now for 16 years, and it's been well controlled for nearly the last 8 years due to the biologic medication Remicade. In order to keep my symptoms as minimal and unintrusive as possible, I receive Remicade infusions via IV every 5 weeks. I have been getting this same medicine, at this same dose, for almost 8 years now as mentioned above, and in the last few years especially I’ve gotten the process down to a science.

Ever since I was first prescribed Remicade, I was prescribed pre-medications (premeds).

Pre-medications

Benadryl, Tylenol and Solumedrol (a low dose steroid). Although every five weeks I still take 1-2 days to fully recover from my infusions, this combination of premeds has enabled me to really minimize the after effects of receiving Remicade and keeping my Crohn’s disease from interrupting my daily life as much as possible. We even added in a liter of fluids to run just before Remicade or concurrently while Remicade is being administered.

This helped immensely, and it has allowed me sometimes to even experience feeling rather normal the day after my infusion - keeping things very ideal as I have a 5 year old daughter who wants mommy to be able to play and go on adventures, even after Remicade.

Steroid side effects

Recently, I started to wonder about the steroid dose.

Because my body doesn’t make the stress hormone cortisol, I take oral cortisone every morning and every afternoon to mimic what my body cannot do on it’s own. The extra steroid (Solumedrol) that I take before my Remicade infusion was put into place to prevent some of the symptoms of the “Remicade Hangover” - including headaches, body aches and flu like symptoms.

However, for at least the last two years, the extra steroid has caused a huge influx in my anxiety for approximately 48 hours after it’s administered.

Five weeks ago, before my last infusion, I asked my nurse if we could try skipping the steroid. I thought maybe after being on it for so long, my body could’ve figured out what to do on it’s own, and maybe it wasn’t necessary anymore.

Removing steroids from my premeds

That first infusion without the Solumedrol went fine, so I counted my decision as a win and moved forward.

My regular infusion was due, but due to a scuffle between my infusion company and the insurance company at the switch of the new year, I was dosed a few days later than I should've been. I was also administered the medication by a different nurse - not the one who knows me so well.

I decided, as I had the previous time, to skip the Solumedrol. I figured if I woke up fine the day after, I could remove the steroid as a premed, thus making the whole infusion experience less anxiety provoking overall.

But unfortunately, that wasn't my experience.

Returning symptoms

About 12 hours after my infusion finished, I woke up during the night with a migraine - the first of its kind in years. I took all of my abortive medications, took in a bunch of hydration, and tried to go back to sleep.

Here I am, six hours later, still feeling the headache (although much more tolerable now), as well as fatigue and body aches - symptoms I used to experience in my early days on Remicade.

Apparently, that steroid is necessary.

A lesson learned

I won't be making that mistake again.

If you are on Remicade, or another infusion medication to manage your IBD, do you take premeds first? Have you ever tried to wean off or stop them to see if they're truly necessary? I'm so interested to hear others experiences, as I was quite surprised at my own body's reactionary difference between the two infusions where I did not utilize the Solumedrol.