Where do I even begin? It’s been a few weeks now since I was totally blindsided. I thought everything was going so well. Life was happy and truly felt worth living. Now, looking back over the past few months I feel like I really should have seen the signs. We all know that hindsight is 20/20… It really does feel like it came out of nowhere, though, ya know? I had so many explanations running through my head about what was going on under the surface, but I never expected this. This…my most painful break up.
Thankfully, I am not talking about my relationship with Alex. He is truly my rock and I don’t know how I’d deal with this without him.
I’m also not talking about #Brangelina (but, like, WHOA! Right?)
Remicade broke up with me. Suddenly. (Or so it felt).
Yes, Remicade, my miracle drug; the hero in this post, in fact. The one that well and truly saved my life last year decided that we just weren’t working together anymore and up and left me to deal with (dun dun DUN) drug-induced lupus.
*record scratch* *freeze frame* “Now, you’re probably wondering how I wound up in this situation…”
I realize that most of you reading this have either never heard of Remicade, or have only heard of it sparingly through me and just know that it’s a drug used to treat Ulcerative Colitis (and Crohn’s and Rheumatoid Arthritis). Remicade (drug name: Infliximab) is a chimeric monoclonal antibody biologic (literally WTF?) drug which basically (don’t kill me, science friends) means that it’s a drug that is extracted from a biological source, and in Remicade’s case, the biological source happens to be MICE. I can hear everyone who has seen me lose my shit around a mouse laughing in the background.
Anyway, when you start taking Remicade (or drugs like it) you’ll be warned about the fact that you could develop antibodies to the drug because your body just might notice that mouse protein is floating around in your body and that could render the drug useless because your immune system will try to fight it off like an infection. No bueno. I, like many other patients, took a supplementary immunosuppressant to try to ward off the development of antibodies.
I responded REALLY well to Remicade. I literally noticed an improvement in my UC symptoms the very same day of my first infusion. However, it took some time to get my dosing and frequency right. I would always start to get sick again around the 4 week mark at 5mg/kg. I was told I was a “fast metabolizer” (tell that to the jar of Nutella I had to make Alex hide, please). This was determined by somewhat regular blood tests. Eventually, we found that an infusion every 4 weeks at 10mg/kg worked for me. For reference, the average patient will get infused every 8 weeks with 5mg/kg (aka I was getting a hell of a lot of Remicade). The plan was to stick with this frequency and dosage to allow the drug to build up in my body enough that I could eventually start getting infused every 6 weeks, and then maybe every 8 weeks.
So how did this happen?
Shit luck? I was Hitler in a past life? I don’t know how, but it did. I’m writing about it because I know it will help me sort through this incredibly low point in my life and will hopefully help someone else. There are a number of internet forum posts on this topic, but I haven’t been able to find any blog posts or series about how you feel when you develop these antibodies or what happens next. That’s what I’m going to try to do.
On July 19th (I remember because it was the night before we left for Europe–posts coming! I know you’re all DYING 😉 ) my right ankle was in unbearable pain. My feet and legs had been hurting on and off in the days prior to this, but I chocked it up to wearing heels at a wedding the weekend before and not sitting down for almost 12 hours. We left on our flight to Amsterdam the next day and I was still in a lot of pain. Being cooped up on two different flights (one trans-atlantic and overnight) really didn’t help. The pain continued throughout our entire, nearly 3 week, trip. The pain didn’t just stay in my right ankle, though. It migrated through both knees, both ankles, my hips, my toes and even both hands and all of my fingers.
I attributed the persisting pain to our late nights and early mornings (which were actually not so early by the time we got going because I was hurting so badly), running to every train, walking an average of at least 10km per day on cobblestone streets, and clutching my purse with a death grip. Now I know…
I came home and was zonked and sore. Then I felt semi-ok for a few days. Then I got my first iron infusion in over a year with the highest dose I’d ever had. After the iron I felt worse than ever before. Some googling told me that sore and swollen joints could be a side effect of iron infusions, so I blamed it on that. A week later, I went home from work with my leg totally seized up. By 11pm that night (3 weeks ago today) I was bawling and writhing in pain. I could. not. move. Moving my fingers was enough to make me shriek. Alex basically carried me to the car and we headed to the emergency room. We were there until 7am, but nothing could really be determined. They suspected that maybe I had Rheumatoid Arthritis. It kind of made sense to me… another autoimmune disease? Why the f**** not?! My mom has it and was diagnosed at 24. This was 4 days before my 24th birthday so it seemed like it was right on time. For those few hours on that Friday morning, I’d nearly accepted that I now had RA too.
Then, the official break up happened. I went to my already scheduled Remicade appointment later that afternoon. I told my nurses at the infusion clinic what had transpired the night before. My nurse’s face totally fell. She said “It might be the Remicade.” I didn’t quite understand what she was getting at, at first. All this time I’d been very privy to the need to avoid antibodies. That I couldn’t go too long without Remicade, otherwise I’d develop them. I didn’t think it would be possible for me to develop them with my very high dosage and frequency, and truthfully I didn’t realize that any symptoms went along with their development. I just thought it would show up in a test result. I guess at first I thought she was just telling me it was a side effect.
My nurse got me set up in my recliner anyway and got me my pre-meds. I had the heat pack on my invisible veins and it seemed like business as usual. She said she was just going to make a phone call. (I should note that I left a message for my IBD team already that morning to let them know what was going on). She came back and had a blank look on her face. She’d been on the phone with my doctor and she said, “You have antibodies. We have to cancel your infusion. The test results came back two days ago.” (I mean, I guess I’m glad the break up was in person and not over the phone?!)
I burst into tears and my nurse started crying with me. She knew how sick I’d been a bit over a year ago, and how much Remicade had changed my life for the better. I cried and cried and she did her best to comfort me. It sunk in that not just this infusion was canceled, but I would not be able to take Remicade ever again. She told me that while this was devastating, it was really lucky that it was figured out before the drip started going. She told me how they’ve had to have people picked up at the clinic by ambulance while being infused because no one knew that they had antibodies (it can happen quickly and tests are only done every few months) and patients have stopped breathing or have gone in to shock. Really sobering stuff.
So where am I now?
I’m in the process of getting started on a brand new drug called Entyvio (or vedolizumab). It’s another infusion that wasn’t available to me when I started Remicade. It’s very new to patients like me, but has been in clinical trials for many years and it shows particularly good results for patients with Ulcerative Colitis. The potential side effects are also less nasty than Remicade (Remicade offered an increased risk of lymphoma, which, believe it or not is worth it when you honestly feel like you’re not living a real life when your IBD makes you so incredibly sick). There are a lot of first-hand accounts of Remicade posted online in the form of blog posts and videos, but hardly anything on Entyvio. I’m hoping to document my journey here and I hope to be a bit of a resource for anyone else who might be starting this new drug in the future.
And finally, what about that “drug-induced lupus” you mentioned above? Wtf?
WTF is right. My nurse practitioner evaluated all of my symptoms after Remicade broke up with me and determined that the antibody development is causing this drug-induced lupus. Basically, I’m experiencing many of the same symptoms as someone who has actual lupus. It’s HORRIBLE. I’m so incredibly grateful that this is not (or so I’m told; it is hard to believe) permanent and will dissipate with patience and time as the Remicade works its way out of my body. I can tell that my body is fighting incredibly hard because I’ve been experiencing:
- Persistent, excruciating joint pain. Every joint in my body hurts, but especially my fingers, thumbs, knees, toes, and ankles. Today it was nearly impossible to write with a pencil. As of this week I can get by pretty well all day at work with one dose each of advil and tylenol, but by mid-evening I’m back in excruciating pain town. A few weeks ago I was probably about to overdose on painkillers.
- Confusion. This has dissipated a lot over the past few months. On our vacation I was making a lot of really out of character, illogical mistakes. To the point where Alex remarked several times “What’s going on? This isn’t like you at all.” I also remarked a few times at work that I felt like I couldn’t access my normal vocabulary. Looking back now, it all makes sense.
- Fatigue. I am just so, so tired.
The worst “symptom” is well, I am very, very sad. Logically, I know this is a low point in my life and it won’t last forever. I have incredibly understanding colleagues and a great family, boyfriend, and friends. Heck, this all started while I was on a dream vacation in Europe with Alex–I have a lot to be thankful for! But it’s really hard to have the feeling of security Remicade provided ripped out from under me all while dealing with the worst pain of my life. It’s been six weeks since I last had Remicade and I’m scared about my colitis flaring up. I don’t ever want to be as sick as I was in 2015. It’s terrifying. I still haven’t started my Entyvio and unlike Remicade, it can take most patients longer to respond. The uncertainty is weighing on me.
Plus, I hate not being able to do anything. I haven’t been to barre class in over a month. Some days I can barely walk. My biggest stress reliever and one of my biggest pleasures over the past year has been working out, but I just can’t do it right now. I was even about to put my barre instructor certification to good use–I was offered a teaching position and the week before I was supposed to start, all of this came to a head and I had to give it up. It’s been incredibly disappointing and discouraging. All that said, it’s opened my eyes to how those of us with able bodies will take it for granted.
I feel like I’ve typed out my whole life story, but it really only covers a few months. I hope that in writing about what happens AFTER Remicade I’ll be able to help some other IBD patients and that I’ll look back and realize that this happened so that something better could fall into place.
Finally, to the people who have told me that my Instagram makes my life look perfect: now you know that it’s not. I’m just good at instagram 🙂 😉
*Edited to add*: I’m still an absolute supporter of Remicade. As mentioned, it worked incredibly well for me for over a year. It doesn’t work for everyone in the first place, and I am still very grateful to the ways it enhanced and improved my life, even if for a short time. I don’t want this post to discourage anyone from trying it. Some people can use Remicade for years and years without any trouble and I fully encourage you to give it a try if that’s what you and your healthcare team have decided might work for you. I’m hopeful that this post can provide some first-hand information about what to look for if you need to be aware of antibody development.