My Crohn's Diaries

Welp, I’m officially immune suppressed. Yay! My experience with starting Humira was a bit of a whirlwind, a mostly administrative one.

I went for a follow-up with my doctor after my last colonoscopy in July where we saw continuing inflammation in my esophagus, stomach, and colon despite taking Mesalamine. So, after waiting six weeks for a follow-up, I went in and was given, essentially, two options: Humira or Remicade. My doctor recommended Humira, mostly because it allows a little more flexibility to travel than Remicade due to having to go to an infusion center. The doctor touched on the possibility of getting sick more often, susceptibility to infection, etc. and she sent me to the lab to get blood tests for Tuberculosis, Hepatitis B, and panels for inflammation and vitamin levels.

I do wish I had asked more questions, but I have doctor-brain-freeze more than I’d like to admit to and I didn’t really know what the next steps would be in order to prepare questions. I sometimes desperately want to bring my mom to my appointments even though I’m far too old because she always knows what to ask. But, I didn’t bring her and, honestly, didn’t ask much outside of what to do if I get sick and what side effects to be aware of.

The doctor told me to send her a message in the portal once I started the medication and that some indefinable “they” would give me more information once insurance approved it and it was out the door for me. I checked my insurance portal daily to see if the pre-approval appeared and after five days, it finally did. The next day, they approved it…woo hoo (I think?).

I then got an email from a specialty pharmacy that same day saying I could place the order for the Humira. When I logged in, it showed a prescription for the Humira plus one for a sharps container, which answered a question I should have thought to ask before about what to do with the damn things once I used them.

I placed the order, filled out a questionnaire that asked me if I had injection training (no), questions for the pharmacist (yes! tons!), and asked about other medications I took. There was an option to have the medication mailed to me, but I live in a very hot state and work a 9-5 (more like 8-5 am I right?) job so I worried that it would end up sitting outside in 100+ degree heat for hours depending on when it arrived. I opted to have it delivered to a CVS near me instead. (I have since gotten a cryptic letter from my insurance company about that, so we’ll see if I run into any issues with my next refill.)

The next day, I got a call from a pharmacist at the specialty pharmacy who talked me through some warnings and information like not to get any live vaccines, to contact my doctor if I get sick, etc. He then told me I had to arrange for injection training through my doctor’s office which had not been brought up during my appointment. Ugh.

I scheduled the delivery, the earliest being a week later, and then called my doctor’s office (you’ll notice there’s a lot of calling happening in this process…). I was transferred to their specialty medication point of contact who said I didn’t actually need injection training and to go to the medication’s website where there was a video to watch and resources to sign up for.

So, to the website I went. I signed up, clicked around on some resources, requested a travel case and injection kit that as of at least ten days later still have not arrived, watched the referenced video, and opted in on the free nurse ambassador program.

Three days after that, I got a call from the nurse ambassador program from an introductory person who told me about their card that can provide some discounts at the pharmacy (which I haven’t used yet, so I’ll report back) and double checked my information. She then said she’d send my information to my assigned nurse and I’d hear from her in the next few days.

The next day, was The Day. I picked up my Humira starter kit and my sharps container after work. I asked the pharmacist what to do with the sharps container when it was full and she suggested taking it to a nearby fire station so…I need to look into that more down the line. One problem at a time, right?

I then, as a super capable adult, went to my parent’s house to do the first two injections. I was one, mildly worried about some allergic reaction, and two, more than mildly worried I didn’t have the guts to do it. I’m not exactly a wimp when it comes to injections, but doing it to myself seemed a whole different ballgame entirely than someone else pulling the proverbial trigger. My mom made me an after-injection pie treat and played Taylor Swift and, following the videos we watched on the Humira site and online, I did the first injection after a super, super minor meltdown and some procrastinating.

I opted to do one in the thigh and one in the stomach for this first set of doses so I could know which I preferred going forward. The stomach didn’t hurt at all going in, so much so I wondered if I did something wrong. I did set out the injections about half an hour before I did it which I heard helped, but I sort of was still expecting more. But, the site bled after and I took that to mean all was well. I later could feel some of the liquid pooling under my skin so I knew it was in there, at the very least.

I waited a bit before doing the second one. The leg was a little bit more painful going in, but didn’t hurt at all the rest of the night while my stomach was tender for a while. I think I’ll be going with leg going forward, but we’ll see.

I did develop some redness at both sites, the stomach sporting a round red spot and the thigh a smaller-than-a-penny-sized dot, but neither site has been itchy or painful so I haven’t been too worried about that. I still have some redness eight days later, but, it’s settling.

The day after, my nurse ambassador called. We set up a FaceTime meeting for my next dose so she can go over tips and tricks. I wish I knew that was an option before and I would have signed up sooner, but I can’t change that, right? Especially since I didn’t know that option existed early enough for it to work out. So, for anyone starting their Humira soon, check out their site! She has given me some good information already and I haven’t had my meeting with her yet.

After everything I read on Reddit about the “Humira hangover” I braced myself the morning after but I sort of felt…the same? A little run down, a slight sore throat, but otherwise same old same old. It’s not exactly like I have been feeling great lately so it hardly felt different to what I normally feel like in the morning. Maybe going forward I’ll have more of that, but for now I’m grateful not to have had too much of a blah feeling afterwards.

The week after I was definitely tired, but nothing too major. I also stopped my Mesalamine once I started the Humira, so that could be a contributing factor to the fatigue as well. Otherwise, I sort of felt the same. I guess I was expecting some proof I had been changed in some discernible way. Some concrete things to point to to say I had done it right, that it had worked, that I was different now than I was before hitting that button.

Mentally, I suppose I have been changed. I feel like the severity or longevity of the disease didn’t quite hit me until I was carting a sharps container to my parent’s house on a Thursday night after work. Pills, I can do. In my mind, taking the Mesalamine wasn’t all that different from acne medication or a frequent Tylenol. 

But by injecting myself with a biologic, pushing that trigger, it entered a new level of reality for me. A different definition of who and what I am. It hit me that I am a sick person and I will always be sick, in some form or another. There is no cure. There is no reality where I do not have to do some form of treatment to keep myself pain-free and alive. I will always, in some way, have to think about my immune system, my symptoms, my medications more than a person without IBD will have to. I will have to take note of when I go to the bathroom, when my stomach hurts, when I’m fatigued, forever. I will have to learn the difference between a normal stomach ache and an emergency stomach ache or when a flare up is minor or when it requires immediate intervention. I will have to learn how to be a sick person. And that’s not a bad thing, it’s just my reality. A reality that hit me on a Thursday night when everyone around me was watching TV and decompressing from their day and saying we made it, tomorrow is Friday. I felt othered, somehow, outside the norm because I sort of was and am and will be.

Yes, other people have their own things going on, this is not to say I’m the only one. I just wasn’t prepared to be thinking, suddenly, of the years in front of me, with appointments and pharmacy runs and injection days and maybe, but hopefully not, surgeries and life, life, happening at the same time. Not separate. Not on pause. This was and will be my life.

It takes up more brain power than I’d thought it would. This is not a new thought, I know. I am not discovering a new land or inventing the medical wheel here. I’m sure people with chronic illnesses feel this every day. Think like this every day. And now I am someone with a chronic illness and I feel and think like this too.

It’s scary. It’s uncomfortable. Having to tell my boss and coworkers I might be out more as my body adjusts and explaining why. Having to figure out the logistics of insurance, specialty pharmacies, nurse ambassadors. Having to do the thing, to inject myself, as Taylor Swift sings in the background about being a real tough kid. I am a real tough kid. I can handle my shit. But I can be tough and also scared and also hopeful that this will answer the problems I need it to so I can stop thinking so much about, well, my shit.

So, anyway, that was my first Thursday with Humira. I just put in for my next refill since it took a while for it to be delivered and I don’t want to get caught without a pen when I need it. The system asked some questions when I put the order in about symptoms and medications and now I’m waiting for it to be approved by my doctor. My next dose is in a week or so and I’ll be meeting with my nurse ambassador during the injection, so I’ll touch on that another time.

Now, for the real important stuff, injection day treats! I’m a big treat person, so if you have any recommendations or things that have helped you, let me know below!