About a year ago, I wrote about how Remicade is the devil I know — the immune suppression and fatigue can be very frustrating on their own, and the steroid rollercoaster I have every 6 weeks is seriously annoying, but there other treatment options currently available are much scarier.
Still, I thought it was worthwhile to talk with my doctors about how to possibly reduce the amount of time I spend having steroid withdrawal. With 100 mg of solucortef, I have 4 days of withdrawal. I almost always get my Remicade on a Thursday afternoon and I can’t return to work until Tuesday morning because I’m too tired and/or muddle-headed to do good work until then. Also, the things I can do on steroid withdrawal weekend are limited in scope because of my withdrawal symptoms. If I could cut a day off withdrawal by lowering my dose of steroids, it could make a big difference to my quality of life.
Now, 100 mg of solucortef is a lot. In fact, most patients on Remicade don’t even get steroid pre-meds — they either get an antihistamine (usually Benadryl) or no pre-meds at all. Many years ago, I had twice tried using only Benadryl as a pre-med, and both times I’d had allergic reactions to Remicade. In both cases, the allergic reactions came on more than 24 hours after the infusion, and consisted of hives and wheezing that lasted for more than a week. I never got those symptoms while on steroids. My GI and I figured that we could drop the dose of steroids and add in some Benadryl and things would be OK. We were very cautious, dropping my steroid dose from 100 mg to 75 mg (a 25% cut) and using 75 mg of Benadryl to make up the difference in allergy suppression. For context, a normal dose of Benadryl is 25 mg. A bad reaction seemed unlikely, because I’d been on steroids and on Benadryl before, though not at the same time. Losing a day to being drowsy on Benadryl but having an extra day of withdrawal-free life seemed like a good trade-off.
We ran the experiment the treatment cycle before last. It took a lot of organization — in fact, the experiment took place a cycle after it was supposed to because of a communications issue between the GI’s office, the Remicade coordinator, and the infusion clinic. Both times it was a big fuss. The last time I had IV Benadryl, after an allergic reaction to the anaesthetics I was given for a colonocopy, I was unable to open my eyes or talk for about 8 hours. It even scared the nurses how long I was out. For the new experimental pre-med protocol, I had to have my boyfriend pick me up from the infusion clinic to take me home in a cab in case I passed out again. (Normally after treatment I’m manic, but I can handle myself well enough to get home or to subsequent social events on my own).
As for the experiment, well, it was not a success.
First off, the nurses at the clinic could not believe that the 75 mg of Benadryl written in my chart was for real. The lead nurse even phoned my Remicade coordinator to confirm it because that dose would knock out a huge person, which I am not.
Within about 20 minutes of receiving the Benadryl pre-med, I got really cold — my fingernails turned blue — but two blankets and a hot tea didn’t seem to help. I was also afraid to hold onto the tea because I could barely sit up, I was so groggy. Even more strangely, I started to twitch and squirm. I couldn’t stay in one position for more than a few seconds. The feeling is hard to describe. It’s almost like being itchy, but without actually feeling an itch — just an uncontrollable urge to be in another position because staying still would be unbearable. The result was that I was rolling on my back kind of like a dog or a horse does on the grass when it’s happy, though I was definitely not happy! Even though I could not really open my eyes for more than a few seconds at a time, I was able to slur out “I think the Benadryl is making me twitchy,” and to be embarrassed about it, because the clinic was full of other people who were all sitting or sleeping quietly in their chairs. The head nurse confirmed that I was having a drug reaction and that this kind of reaction to high doses of Benadryl was something she’d seen before. I’ve been going to the same infusion clinic for 11 years and I had never seen this nurse look so concerned before, though.
The extreme squirminess and freezing cold feeling, as well as the worst of the grogginess, went away after about 3 hours, when my boyfriend came to pick me up. Maybe the time I was knocked out for 8 hours on far less Benadryl was an interaction of the Benadryl and anaesthetic remaining in my system, because I was able to walk and talk, if not very elegantly, when it was time to leave the infusion clinic. Still, I would not have been able to get home on my own.
In the middle of the night, I woke up because I felt like I couldn’t breathe. I was just alert enough to think about using the steroid inhaler on my dresser at the other end of the room, but to dismiss getting up to use it as too much effort. Then I fell back asleep. In retrospect, the lack of logic in my behaviour during what could have been a serious health crisis was pretty scary.
Steroid withdrawal lasted a day less than usual, but I was extremely wheezy for the next week. I would get winded just walking across a room. I also had some joint pain and a bit of a rash — in short, enough symptoms to make me fear that my latent Remicade allergy was not under control.
Before the week was through, I was back on the phone with my GI and Remicade coordinator to tell them what happened and to ensure that I would be able to switch back to my regular treatment protocol for the next time.
So, last treatment, I was back to the pre-med devil I know. Treatment was absolutely mundane, and steroid withdrawal was predictable.
Sometimes I want to hug the devil I know.