my experience with infliximab (remicade/remsima)
After failing a course of Prednisone and failing Azathioprine, I was moved up to being treated with biologics for my Crohn's disease. This is the first time I'm trying one, but not the first in my family; one of my parents is using etanercept (Erelzi) to control rheumatoid arthritis together with methotrexate.
Infliximab is a chimeric medicine with human and murine (mouse) properties, and it can happen that you are becoming allergic to it, experiencing anaphylactic shock, injection/infusion site reactions, or building antibodies against it after a while (rendering it ineffective). Since it is a Tumor Necrosis Factor alpha blocker blocking this specific immune path, it makes you more prone to infections (especially upper respiratory infections) and there are some elevated lymphoma risks. The list of possible side effects is long, but I'm just gonna talk about my experience now.
My gastroenterologist started me on two infusions two weeks apart, 5mg/kg. Other IBD patients seem to have infusion centers or go to hospitals to get their infusions and they have nice comfy chairs, drinks, heating and cooling pads, blankets, and machines controlling the speed ... meanwhile, I was in the waiting room of my doctor's office, in the uncomfy chair, no drinks or blankets, on a good ol manual drip. Sitting there for everyone to see like a warning sign for what happens to evil intestines, hahaha. Evil intestines get the mouse juice.
The infusion was very chill for me. I heard some people get headaches, get nauseous, tired... I felt completely fine, like nothing happened. The first time it took around 2 hours, which I was told about before; though after nothing adverse happened after the first 1,5h of very slow drip, my doctor sped it up. At the second infusion date, I cheated a little and increased drip speed myself to drain extra fast, so I think that was only an hour. I only did this because I was in view of nurses and the doctor if anything happened, by the way.
After those two, I got a 4 week break and then had to show up to the gastroenterologist office with the autopens they prescriped me. In IBD circles at least, it seems to be pretty unknown or new that infliximab can be given subcutaneously, since it used to be infusions only. But some offbrands and biosimilars are offering syringes and autopens now - mine is Remsima by Celltrion.
There, they gave it to me, and two weeks later, I was supposed to show up to give it to myself while supervised. The first injection was super awful. I have no issues with needles or syringes, no issues with giving blood; it's the damn liquid that hurt! It has acetic acid, so it burns like hell. I know from other patients that are on adalimumab (Humira) that it used to contain citrate and burned extremely as well before they released a citrate free version. I hope this will happen to Remsima one day, because this burning acid is nuts.
The nurse did it in a weird spot that didn't have much fat, and so it bothered me a lot even a day after the injection. I also experienced two times in which it felt like I could hardly breathe for a second or two and an inner physical feeling of panic, but it instantly went away - adrenaline maybe? Both happened within the first 30 mins of the injection.
I'm supposed to get an injection every two weeks. Now, the past few days I felt like I'm getting sick and you are supposed to contact your doctor if you do to talk to them about if you should skip the next shot to give your body a better fighting chance or keep taking it. My doctor recommended skipping it and reaching out when I feel better. I cancelled the appointment pretty early with this exchange, but unexpectedly felt good enough the same evening of the cancelled appointment.
I don't recommend going against your doctor's advice by the way, but I work in pharmacovigilance, read the package leaflet, other patient info online, and advice from other patients and their doctors only skip the shot/infusion if their infections are so bad they are genuinely down with a fever and/or on antibiotics, and neither was the case for me. I was already at the end of the shot duration (hence the upcoming new shot needed) and waited enough to see if the infection would turn bad, but nothing. Instead, the cold or what it was (flu, covid and rsv all tested negative twice?) triggered my immune system into attacking my joints and intestines again, making the Crohn's a lot worse. And it was so bad that I thought, well, I'm risking it. At that point I didn't feel 100% healthy again yet, but I wasn't sniffling and not coughing anymore, just feeling it a bit in my bones and head, and the Crohn's was extremely painful. I'd rather be down with a cold for a lil longer than bear that.
So, I did my first pen unsupervised with the support of my fiancee, oops! You can catch up a missed shot up to 7 days later, by the way, but I was desperate and couldn't wait to contact my doc after the weekend (it was Friday evening). The description on how to do it in the package leaflet is very thorough, the device itself is idiot-proof I'd say, and there's a sweet nurse on YouTube that shows how to use it on a dummy as well. I had already seen it in person being done by my nurse, too.
Basically, you take it out of the fridge 30+ minutes prior, check if it is cloudy or broken; then you disinfect the area (thigh or stomach), wait a bit, take off the olive-colored cap, and push it into your flesh until you hear a click. It automatically empties its load into you (hey, don't laugh!) and you experience the pain of a burning knife until there's a second click. You count to at least five, check whether the little window in it shows that the olive-colored pusher has come all the way down, and then remove it.
It still hurt this time, but I chose a better spot with more fat this time than the nurse did, so it was a bit more comfortable and not swollen or painful after it was done. It took a little courage to actually do it especially because I was stupid and looked under the cap and saw the length of the needle, oh my god. Don't do that.
I chose to always have this on Fridays (infusions and injections) to give myself time to bounce back over the weekend just in case. But to be honest, so far I always feel fine the next day. I get tired pretty soon after the injections, but a nice kind of tired. Like my entire body feels a bit heavy, under a nice warm weighted blanket, I am fully relaxed, and the good kind of sleepy. It's like the medical form of a warm milk with honey, I guess, for me at least. I really enjoy it and I can feel it in my entire body.
I got myself cute heart bandaids; both big single hearts to put on, and the usual rectangles with multiple hearts on it.
Overall, I'm on it since 30th August now, and I think it helps, or at least has started helping. I'll see how it is another month or two down the line to be sure, but for now I am happy with it! It has helped me with some autoimmune skin issues, the intestinal inflammation, and I think it is also slowly tackling the joint pain and stiffness (though that progress is a lot slower than the other two). :)
Published 26 Oct, 2024, edited 7 months, 2 weeks ago