Life 8 weeks at a time

Today I’m sitting in the cancer centre at St John of God Hospital getting my 8-weekly infusion of Remicade, a biologic used to IBD. I was over the moon to get started on Remicade 9 months ago after Mezavant and Mercaptopurine both stopped working, after reading and hearing how great it was at treating colitis. It’s a pretty gnarly experience having to get an infusion every 8 weeks for the foreseeable future but I’m stoked to report that I’ve had success on it and my disease is in remission for the time being. I’ve been wanting to write about how it’s going for a while and give people who might have to take it in the future some info about my experience, so here goes.

When I started on Remicade I was in the midst of the worst flare since my original one. The Mercaptopurine had stopped working months earlier but due to our healthcare system in Australia hating the idea of paying money for necessary treatments I had to jump through hoops and wait until I was a hair from the emergency ward before getting the okay to have infusions. I mentioned it briefly in my Nepal report that the Remicade didn’t induce remission which is true. I had built it up in my head that Remicade would be the saviour I always needed, that would strike down my colitis within a few days and I’d feel great for the next 10-15 years. When it didn’t, you can imagine that I felt extremely concerned for the future. I had this massive trip coming up and the drug that I got on in the nick of time wasn’t working, the drugs after Remicade are even more hectic and I was thinking that I was pretty close to having to chuck in the towel and get surgery.

A lot of what I’ve said when discussing IBD treatments and general health has been to listen to your doctor. They’re the expert and should know a lot more about your disease than you do. What they don’t know though, is exactly how you feel and how you’re reacting to things happening to your body. Sometimes you might have to make a judgement call about your own treatment and welfare that could possibly be contentious or blatantly against your doctor’s wishes. My GI advised me not to go to Nepal with a flare, but for me that was never an option. I listened to my body and made a decision.

My annoyance with steroids for colitis treatment is well documented here, with the side effects changing every course and somehow managing to be worse every time. My judgement call was that I could put up with those side effects, but I’d be crushed if my flare didn’t settle and my trip was ruined. I had a stockpile of prednisolone like most of us would IBD have, so I started my standard course of 40mg dropping 5mg every week. A week of 40mg had zero effect when usually it would’ve worked by now so I did some research and found out that other people were taking very different doses, some of which were on double mine for lengthy periods of time. I want to acknowledge that doing that is an awful idea, and if that’s what it takes to get you under control it’s not worth it. These drugs are horrible and I will still tell everyone to avoid them at all costs. That said, I did double my dose for a week – and it worked. 4 days later I was already feeling a hell of a lot better, and after dropping the dose gradually over the following 2 weeks I felt as though I was 95% of the way to remission. I saw my GI, told him I was feeling great and the Remicade must be working, then hopped on a plane to Nepal loaded with steroids; not having the slightest clue whether Remicade was working or not but I didn’t care. I was doing this trip to Nepal and whatever happened after I stopped taking steroids was a problem for the future.

I don’t recommend this whatsoever and please don’t use my experience as evidence to make a decision to do something without telling your doctor. Luckily for me, it all worked out. The steroids actually had milder side effects than previous times I’d been on them as I only had mild joint pain in Nepal. I finished my dodgy self made course of Prednisolone about halfway through the trip and left my colitis up to fate. When I got home I had another few weeks before my next Remicade appointment, which went smoothly. Then the next went smoothly… and the next. All the way up to today as I go in for my 6th infusion, I’ve been in remission. I feel great. All I can guess is that Remicade needed help pushing me into remission but once I’m there it can hold its own. Now with the state of the world and my stress levels being higher than ever, I’m still feeling pretty damn good.

Remission for 8ish months. Not one side effect. No longer taking 27 pills a day (at my worst). Somehow, less cost. Less hassle. Less stress.

These have all been the benefits of me getting on Remicade. It’s well and truly lived up to my expectations of being a wonder drug for colitis. I’m no longer naive to the fact that these things won’t work forever, and colitis is always going to be something I deal with in one way or another – but the feeling of relief I’ve got from Remicade has been incredible. I still have the slight worry towards the end of each 8 week period, thinking maybe this will be the time that it comes back before I get my next infusion. That’s something that you kinda have to tune out with this disease, knowing that the drug will stop working at some point is always in your head but the more you think that it’s about to happen the more likely it does happen.

Overall, I’m pretty happy with everything colitis related right now. The last few years has been colitis first life second, where everything I did had to take my disease into account, so this has been a welcome change of pace. While I still have to plan things around infusions, and my mental health still needs attention, I feel so much more free to plan and do things.

At least I would if there wasn’t a coronavirus. Good timing huh?

If anyone is about to go on Remicade or just has concerns and wants to chat to someone that’s on it, hit me up on Instagram @bradmcauliffe.