Trial and error. Guinea pig. Game of darts. Playing blindfolded. Pincushion. Russian roulette…. All incredibly unfair statements, but this is how treating a Crohn’s flare honestly makes me feel. Let the record know, I have an amazing doctor, and I am great hands with him.. but the reality is.. Crohn’s has a mind of its own, making it difficult to keep up with – not just for the patient, but for the doctors as well. Every patient’s illness is different, with different symptoms in different locations, which progresses at different rates on a path of its own. Also let the record show, there is no cure for this illness – so managing systems is the only thing a doctor can do you for you. There is no fixing, solving or curing going on. Just alleviating symptoms, in order or medical priority – which of course, also seems to change as a patient’s illness morphs – on its on schedule…
So.. it has become evident that my existing treatment, Remicade, has reached is expiration date. An expiration date that came way earlier than hoped… just shy of one full year. Apparently, I developed antibodies that “block” the medication from being absorbed correctly, or doing the job correctly. (I’m not in the medical field, and sometimes, I will use my own language because that is what I understand, so hang in there with me here…) Anyway, it stopped working….
My doctor had wanted to try one last “blast” of the Remicade, but after seeing me 5 minutes before the infusion, and the level of pain I was in – I decided to decline the final IV. My doctor and nurses all supported this decision and immediately went to work on plan B… Plan B, that wasn’t there a year ago for me (from my understanding). Thankfully, the year on Remicade bought me a little time for the market to introduce more options for my case. Let me specify more FDA-approved options. Don’t you dare hop on Google and search treatment for Crohn’s to prove me an idiot here – don’t forget, everyone’s illness is different so this is not prescriptive like the flu where everyone gets the same treatment regime. I’ll take a win where I can get it.
So, meet, Humira. Humira is another biologic drug, which means it targets specific parts of an overactive immune system to reduce inflammation. This one in an injection versus an IV like Remicade. This one became a good option for me (not originally ideal) because of the joint pain I have in addition to the “traditional” Crohn’s flares, fistulas and fissures. I also found out that most Crohns patients are required to start with Remicade (I do not know why).
This is one of the trainer pens they sent me (plus the actual first injection injection training with my infusion nurses)… Kinda like an epipen…
Steps are pretty easy… ice your leg/abdomen for roughly 20 mins, take off grey #1 cap, keep flush on skin, do not move pen, take off maroon #2 cap, plunge maroon button, keep flush on your skin for at least 10 seconds, check the little mushroom key-hole. Once window is yellow and line stops moving, remove, (do not wipe blood as you’ll remove medicine), add band-aid and ice for rest of day to keep welts and allergic reactions (expected) down.
So, I packed up my cooler with 4 of these suckers and headed off to my infusion center last Friday. (You are not allowed to give yourself your first round as they apparently need to legally give you training and also monitor you for major reactions during your first shots.) I thought I was ready for an easy 10 minute visit… yea right…
My faithful infusion nurse gave me the first one after icing down my legs… oh my Lord, I was not ready for that. Now, being a Crohn’s patient, I’m used to needles, sticks, bad sticks, giving blood, IVs, bad IVs, giving myself B12 shots… yea, nothing was going to prepare me for 10 seconds of this. I know, you are thinking – Litz, its’s TEN SECONDS, MOVE ON. It was like being stung by a hive full of bees and not being able to run away from it. Then, I had to give MYSELF THREE MORE OF THESE THINGS! I’m really not one to show too much emotion in public, and being a Crohn’s patient, we generally have a fairly high tolerance for pain… but these actually took my breath away. My poor nurse wanted me to slow down, but I just wanted to PLOW through these and get them over and done with…. But at least they were done and KNOCK ON WOOD, I’ll never have to do 4 injections again!! 🙂 Since I did have some welts they needed to watch me for breathing issues for a little while, so I did win a consolation prize of some hot tea and more ice – score.
HINT TO ANYONE STARTING HUMIRA: My nurses advised me to NEVER inject in the abdomen as it will be even worse there.
(Top Left: My first delivery of Humira, yes it comes to you house and lives in your fridge, Top Right: My cooler packed with first 4x shots/pens, Bottom Left: Icing down the reaction, Bottom Right: hot tea consolation prize).
I don’t know yet if this will work for me, I heard it can take up to 3 months to work (lord help me if it seriously takes that long…), but I’m trying to stay optimistic that this will help me find remission. I will take shots every other week until I find out, though! Now that the first 4x are done (THANK GOD), I go down to 2x (once), and then the plan is to give myself 1x shot every other week. I’m told these will get easier – here is is to hoping!
But I’m not off the hook tomorrow completely, it is still a shot day for me 😦 Its B12 day for me. This is an easy one, and one I’ve been doing for over a year now. All set up and ready to go for the morning – love these ones! Helps with energy, so maybe it’ll be a good Friday! 🙂