My Crohn's Diaries

Well, long time no talk. There’s a lot to catch up on. So, let’s jump in!

After my last Humira dose on Christmas day, the welting persisted. I reached out to my doctor’s office to let my gastro know I still had the issue even with the dermatologist’s prescription and she immediately put in a referral to insurance for Remicade. While I was daunted by the idea of switching meds again, I was reminded once again how lucky (and grateful) I am to have a responsive doctor who replies to every message, silly or not, often within minutes. No forced follow-up appointments, no extended waiting, she just put the order in.

She did let me know I needed to get some blood work done and, after that, get another dose of the Hepatitis B vaccine since my blood work showed I wasn’t immune despite getting the vaccines as a child. Apparently, that happens sometimes! Who knew?

After one insurance refusal, follow up paperwork from my doctor’s office, and a month-long waiting period full of radio silence, I was approved to start Inflectra, a biosimilar to Remicade. Easy peasy, right? Well, not so fast.

The infusion center that my insurance approved turned out to be (and continues to be)…less than easy to work with. It took calling 17 times in the span of three weeks to get my first appointment scheduled. 17 calls in which I had to take time away from my job to call, leave a message, speak to the operators, only for my assigned scheduler not to call me back. It wasn’t phone tag; it was calling a dead end over and over again. What’s that they say about hell? Yeah, I was in it. I tried asking for a supervisor, for a different scheduler, but alas I remained assigned to the same person whom I still must call numerous times to get a phone call.

Not once in my dozens of phone calls at this point has she answered the phone. I understand that working as a scheduler isn’t easy and that she’s likely on the phone with someone else, but it’s literally her job to call me back and seventeen unreturned calls is, well, a little excessive. Especially when my health, and the health of everyone else calling, is on the line.

When, finally, she called me back, I scheduled my first infusion appointment. She gave me very little information except that it would be with a third-party nurse, and it would be at my apartment. She didn’t mention supplies, cost, nothing. Soon after, a person from the pharmacy department called me with much more information regarding getting my supplies delivered, side effects, etc. and asked me quite a few questions about my condition, health, weight, and more. Feeling much more informed, I prepared for my appointment by Googling everything I could about Inflectra and home infusions.

The night before, the infusion center shipped out my supplies. The delivery driver called me before he arrived to let me know when he would arrive, which I really appreciated. I also obsessively cleaned my apartment from top to bottom and then, after what felt like forever but also so suddenly I couldn’t comprehend that this was my life now, the next afternoon, the nurse arrived at my front door. When she unpacked the supplies the infusion center sent, though, the tubing she needed wasn’t included. She, being a third-party nurse, didn’t have a backup so after multiple calls to the infusion center and, even worse, after taking my premed doses of Benadryl and Tylenol, we had to reschedule for the next day

So, after taking another day of sick leave from my job at last minute, the nurse came back the next morning and the infusion finally began, for realsies this time. The first infusion was long. So long.

It took the nurse about an hour to mix up my meds and to start to the IV, three hours to administer the meds, and then she had to wait another half an hour to make sure I didn’t have a reaction. And she talked the entire time. Through my Benadryl haze, through the baking show I put on my apartment TV, though my many attempts to be on my phone or play a game on my Switch, she talked. And, yes, I get that it’s her job to be with me and I don’t mind some small talk, but I was nervous to start a new med and tired from the Benadryl and frustrated with the organization as a whole and guilty about taking another day off work especially that last minute, and I didn’t much feel like chit chatting for five hours.

Honestly, I was already a little iffy about the idea of a home infusion. I generally don’t like people being in my apartment because I feel like I must entertain or host them and combining that with a situation in which I’m hooked up to an IV and bleary from the meds, it was like I was caught between needing control but not having it. Plus, it meant I had to clean my place, stock my fridge, put away the one million cat toys I have scattered around, and clean the litter that gets tracked all over my bathroom in the off chance the nurse asked to use it.

Plus, overthinker that I am, I was anxious about what the nurse would do while they were over, where they’d sit, if they’d want to watch TV and what show to put on that would be neutral enough to not offend anyone but entertaining enough to pass the hours. I’m already an anxious person about medical stuff so to add a layer of social anxiety and bringing a stranger in my space? AND, I have a cat who hates strangers, so I felt guilty that she’d have to hide the whole time the nurse was over. As you can probably gather, I wasn’t sold on the idea. But I wasn’t offered an alternative so…it was what it was. I just wasn’t super happy about it.

Luckily, the IV part wasn’t bad at all and I had no side effects at all aside from some tiredness. Dose one, complete!

But that meant I had to start all over again with calling to schedule my next appointment for two weeks later. It only took 10 calls this time and, with only a day’s notice, my second appointment was scheduled with one of their in-house nurses. I’ll admit my frustration with the organization was reaching an all-time high when the appointment time came and went and no one arrived. No one even reached out to say whether they were coming. After yet another call to the infusion center with no answer, I sat in my apartment stewing.

Mostly out of worry that if I didn’t have my infusion that day it would throw off whether it would work effectively (I’m sure that’s not true but it felt true so…) but also because of how much of my time they had wasted through this whole process so far, how much sick leave I was taking for nothing, how much time I had to think and worry and arrange my life around this for them to simply not show up.

I was frustrated too for the people who don’t have as flexible or understanding of a job as I do. For the people who can’t schedule their infusions last minute, can’t take a second day off when the infusion center forgets to send an essential item, when the nurse’s schedule falls behind and doesn’t show up until hours later than expected.

Eventually, the nurse did arrive and, I’ll admit, while I was hesitant to have a male nurse in my apartment with me, I loved him immediately. He was so much gentler, calmer, and surer than the nurse from the third-party. Watching him work, I realized the previous nurse hadn’t put on gloves when she inserted my IV, hadn’t laid down draping when she set the supplies for it out on my cat-hair-covered cat tree beside my couch. This nurse did though and, while it’s probably in his training, he took the time to organize my supplies and to cross out my name in Sharpie on any supplies before he discarded. And, mercy of mercies, he was so quiet. He sat at my kitchen counter and did his own work or texted or whatever it was he did, but he left me alone except for occasionally checking on me. Which I loved. Loved.

Like a lid for every pot, there’s a nurse for every infusion patient and he’s mine. He’s respectful, professional, and quiet. The second infusion was faster, too, ending around two and a half hours after he arrived.

When he left, it was, you guessed it, back to calling the infusion center to schedule my next appointment for a month from then. After only 6 calls this time, I was given my appointment time with three-day’s notice. Not ideal, but better. Still, though, it is very frustrating that they can’t give me an appointment time with any reasonable notice at all. I’d be fired by this point if I had a job that wasn’t as flexible. My heart goes out to the folks in food service and retail and in other industries that don’t grant them that luxury.

Anyway, my third infusion was first thing in the morning in the hopes the nurse wouldn’t fall behind like last time, and, to my delight, he arrived on time this time. And, even more delightful, it was the same nurse as my second infusion! Yay! A quiet, coffee-sipping morning followed with only the faint music from my apartment complex’s pool seeping through the windows on a beautiful spring morning. Infusion three was even faster than the second, ending in just about two hours before I was blissfully alone (with my cat) once again.

Like with my Humira injections, I’ve decided to make my infusion days special, so I took the day off and spent time with my parents, redecorating my apartment and hanging out with my cat. (Can you tell I’m obsessed with my cat?)

As far as side effects go, they’ve been relatively the same as the ones I noticed while on the Humira aside from the welting. I had pretty consistent headaches for a few days after my third infusion, but I can’t tell if that was from the season changing or from the meds, so I’ll have to see if that happens again after my next one. I’ve had some blood when I blow my nose since starting the Humira and that has persisted since switching to the infusions too. Not sure if that’s a normal side effect? I’ll have to ask my doc when I go in next. I haven’t had the dry skin on my hands, though, and I have noticed an improvement in my…trips to the bathroom. So, all in all, it seems to be working the same if not better than the Humira thus far.

I’m set for my next infusion in a month or so and then have a follow up with my gastro a few weeks after that. A colonoscopy will soon follow. Something to look forward to, right?

Well, that’s all she wrote. For today, anyway. If you’re on Remicade/Inflectra/another biosimilar, let me know how you like it. Do you do home infusions or go to an infusion center? What show do you put on while the nurse is over? Talk to y’all soon!