My Crohn's Diaries

It has been seven weeks since I started Humira and I’m finally noticing some changes. To catch you up, here’s what has happened since my first dose.

For my second dose around a month ago, a nurse with Humira scheduled a video call with me to go over tips and tricks with me. I prepped my injection and answered her FaceTime. I was expecting some introductory chit-chat, but she jumped right to it, asking if I was ready to do my injection. She proceeded to, essentially, nicely but quickly talk me through the same instructions as those on the lid of the Humira box. She told me I can order a travel case from their site (which I ordered eight weeks ago and has yet to arrive), told me to look up my state’s disposal rules for my sharps container, and said goodbye. The call lasted four minutes which…is fine just not what I was expecting! I thought tips and tricks would mean stuff not in the instruction booklet, but maybe that’s my wishful thinking that there is some magical secret out there to make them better or easier or something. Really, I can see how that kind of call would be helpful if it was my first dose, but I had already done it before getting connected with her so it was more of a moot point for me.

What did make it worth it, though, is the savings card. When I went to pick up my next set of doses, I asked the pharmacist to add the savings card to my account. They said they couldn’t add it at the pharmacy, but gave me the phone number to the specialty pharmacy line and I was able to add it to my account that way. It was a fairly smooth process and, the next time I picked up my Humira, it was free! Not sure if it will be free every time or just temporarily, but I’ll take it! Free is free!

As far as the actual injections go, I’ve had some side effects that I’m not sure are normal or permanent, the main being red welts at my injection sites. The redness gradually appears the day after the injections in an odd, circle or circle-adjacent shape around an inch wide both directions and is often raised for a day or two before flattening down. After my last injection a few days ago red spots appeared almost immediately which hasn’t happened with previous doses so I’m not sure if that means the side effect is getting worse or what. I’ve also noticed some discoloration is still there from injections over a month ago, fading to a slightly noticeable dark spot under my skin. 

So far I’ve tried taking Benadryl, Claritin, Allegra, putting Cortisone cream on afterwards, icing the location before and after, and none of it seems to stop the welts from forming or even make them smaller. The welts don’t itch or hurt all that much, but they look quite angry. Which, yes, is totally understandable. My skin is mad about the whole injecting-a-sharp-object-into-it part I’m sure. If any of you have this issue, did anything help? Is it something I should be worried about?

I’ve also had a pretty constant sore throat since week two which is driving me ever-so-slightly mad. Every morning when I wake up, there it is. I chug water, I sleep with a humidifier, and still it persists. It’s possible it’s unrelated to the injections. It is allergy season after all. But I’ve never gotten a sore throat during this time of year before, not like this, so I’m leaning toward it being a side effect.

On a more positive note, I’ve decided to make my injection days something to look forward to rather than dread. Every injection day, I pick up a special dinner and an extra sweet treat to enjoy before I do my shot.

I’m trying to make them days I spend a little more time taking care of myself. Days I eat something I really like, as much as I like. Days to try a new, fun dessert and enjoy it. It’s not that the injections hurt all that much, for the most part I don’t feel pain just discomfort, but the whole production of them, the planning, the preparation both physically and mentally, is a process that takes up energy. That I think about, a lot. I want to balance that out, make the day something special rather than an obligation.

Because, really, the injections are another way of taking care of myself the same way a special dinner or a long shower or taking my multivitamins is taking care of myself.

I want to make them days of connection, too. Going forward, I’d like to start inviting a different friend out to lunch, reaching out to someone I love who I maybe haven’t spoken to in a little while, and spending extra time with my cat. Injection days are days that can suck sometimes, so reminding myself that my support system is there, and building it up even more, can only make them suck a little less.

The Humira nurse told me most people start feeling a change around 8 to 12 weeks. I’ve just hit around eight weeks and, taking stock, I do think it has made a difference. I’m not vomiting daily anymore, I don’t have debilitating bloating or stomach pain, and I can even eat things with fiber in them without too much gruff from my digestive system! I’ve gained four pounds which in normal circumstances might not be something I’d celebrate necessarily but, right now, it is. I can go out to eat at restaurants and have lunch with friends at work without running to the bathroom to throw up. I’m not so tired anymore. I have about six weeks until I go back to my doctor for follow-up testing, so I can’t say it’s working for sure, but I’m hopeful! I’m hopeful!