Some of you who aren’t on intravenous medicine might wonder what it’s like to actually receive Remicade. Here’s a bit of what a typical visit to the clinic tends to be like for me.
I go to the clinic — a private clinic run out of a hospital — yes, such things do exist in Canada — drop off my jacket and whatever other nonessential items I’m carrying, pick up my order for blood work from the nurse in charge, and head over to the hospital pharmacy where the order for Remicade is sitting in a little basket behind the counter. I identify myself as a patient there for Remicade and then I pay whatever remains on my EAP/Trillium deductible for that quarter.
- This amount varies because some of my deductible gets used up on my other Crohn’s medications, depending when I need to pick up those prescriptions. Even when I pay the entire quarterly deductible in one go, it’s always significantly less than the cost of the Remicade to the pharmacy: each dose of mine is around $4,200 for 4 vials.
I don’t take the Remicade with me. Instead, the vials are sent directly from the pharmacy to the clinic using a system of tubes (not the interwebz).
- On occasion, the packets of medicine do get jammed in the tubes while in transit. When this happens the clinic staff are never in a good mood!
While the pharmacy is preparing my prescription, I go to the blood testing area and have blood drawn — usually 3 tubes, but sometimes more.
- I try to get the blood drawn from my right arm so that I can have the IV in my left arm — it’s a little more comfortable for me that way, because I’m right-handed. IVs, when done properly, don’t hurt once they’re in, but the long tube hanging down does tend to get in the way.
Next, I return to the clinic. The clinic is a bright room with wood laminate floors, a desk at the front with both a computer and lots of paperwork, as well as cute gifts from patients and cards and so on for the nurses who work there. The room is full of large reclining armchairs with IV poles attached. The main room where I go has room for about 8 or 10 people. There are two other, smaller spaces also available in a room without windows. It can get hot next to the windows on sunny days so some people who find that the treatment makes them feel overheated avoid sitting in the room with the windows.
- To go to the washroom, patients have to ask a nurse for the IV pole on wheels. Only one patient can go at a time.
Most people are in the clinic for Remicade — either for Crohn’s or rheumatoid arthritis — although I met someone in for ankylosing spondylitis once. Some other patients get other biologic drugs, mostly also for arthritis.
Drip. . . drip. . . drip. . .
The mood in the infusion room is generally calm. Nurses come by every once in a while to measure patients’ blood pressure and take our temperature. Sometimes new patients sound or look freaked out, and more experienced patients offer reassurance. Sometimes we chat with the nurses. The main nurse has been at the clinic for only a few months longer than I have been going there, and we enjoy catching up on each other’s lives, especially after the other patients have left. (I’m often the last one out of the clinic because my infusion takes a long time due to my small veins).
The whole experience is kind of like going to an airport. The airport itself isn’t much fun — you’re kind of stuck there — but most people are looking toward getting to their destination. With Remicade, the destination is good health. If I’m feeling really sick, even just going to the clinic feels great because it’s the start of that journey to feeling better. If everything has been going well health-wise, it’s kind of annoying to go to the clinic, but it’s still the only way to stay well.
A lot of people in the treatment room watch movies, read books, or sleep for the entire time they’re there. I suspect that the ones who are watching movies or reading books do not have pre-meds, the way I do. Because I have had mild allergic reactions to Remicade in the past, I get a dose of solucortef first. This steroid does what catabolic steroids seem to do to me in general, that is, it makes me manic. I have so little attention span when I’m on steroids that even following the plot of a really dumb Queen Latifah movie — I can’t even remember which one — was impossible. My distraction of choice was always magazines with lots of pictures and no need to follow a storyline, no matter how predictable or ridiculous.
The people who are sleeping are harder to characterize. They may be just tired or relaxed or on Benadryl or another mild antihistamine to prevent them from having a reaction to Remicade. (I’ve tried using it instead of steroids twice, but got a rash both times, so the steroids work better for me).
When I started Remicade in 2004, magazines were the thing. Most people brought in their old magazines and left them on a special shelf in the hall outside the clinic. A lot of magazine exchanges went on. I particularly liked the cheesy women’s fashion magazines and the interior design ones because of the pictures. The golf magazines, not so much. Now the number of new magazines coming in is next to zero. People seem to prefer the DVD players that the clinic has for patients to borrow, though, now that the clinic has good Wifi, people can just use their own devices.
For those of us who aren’t into watching a tiny screen, there is also a big flat TV at the front of the room, above the handwashing station. Sometimes it’s on Oprah, or showing soap operas, but whenever a major international sporting event is on it often shows that. Two Remicade cycles ago — when I wrote most of this post — it was showing the news. There were lively discussions about Ukrainian and Crimean and Russian politics, the missing Malaysian airliner MH370, and the Oscar Pistorius murder trial (all of which are still unresolved more than 2 months later!)
When the news is less sensational, most of the conversations among patients involve Crohn’s or arthritis or the medicines or doctors or reimbursement or other aspects of being in the health care system in some way. It’s interesting to meet people from different walks of life and ages and genders and races, etc. who are all dealing with roughly the same crazy challenges in life. The only downside is sometimes when you get a really negative chatty person who’s into sickness one-upmanship. Luckily, these conversations are rare. Maybe because they’re so unusual, I will forever remember the one girl who had no filter on her mouth whatsoever who also talked nonstop about all her symptoms in great detail, as well as about her brother’s criminal record, her dog’s oral surgery, and a lot of other truly random and socially inappropriate topics, for 4 hours, non-stop. I mean, she had a captive audience. . .
I usually leave the clinic around 4:30 or 5 pm, hungry and spaced out from the steroids, and more or less restless and worn out, depending on how sick I was before treatment.
And that’s pretty much it! It’s a normal thing for me to do now, after 10 years on Remicade.