Thankful For Biologics
Last updated: April 2022
Despite being actively ill with other diseases, including a troubling GI diagnosis, this is the closest I’ve come to deep and clinical remission in all 17 – going on 18 – years of my life. I finally am on a biologic that works for me, my body, and my Crohn's. And after having had IBD for longer than I haven't, perspectives change wildly.
Good and bad experiences with biologics
When I was 16, Remicade was the new med talked about behind closed doors. When I failed all oral meds in the first 2 months, we aimed high and fast that it would put me in a better place. While it did for a second time, I ended up needing a rectal repair for a high fissure that went into my rectum all the way up, and needed to be surgically resected and cauterized. I had this done twice. Neither time was enjoyable. But Remicade helped hold me over for a year or 2 before switching.
Then Humira lasted a long time for me... until it didn’t. It actually hid a diagnosis of rheumatoid arthritis for several years until I went off of it and all hell broke loose in my hands, feet, and specifically fingers. When I was forced to come off, psoriasis on my scalp bettered, then worsened – it became a cycle. A few years of taking care of the wound and having it cared for really helped it, in addition to switching biologics that would end up clearing it all up.
The worst part was the allergic reaction I would have each time I injected. It didn't start off extremely bad, in fact, I let it go on for 2 years before declaring I needed to stop. Each time, I would get terrible sinus infections that would last until the next injection/infusion, my face would swell and I was getting upper respiratory infections on the regular.
Side effects with Humira
My doctor had me go off of it for a while, stopping all medications, and eventually tried it again (could restart due to no antibodies to the drug) but symptoms just became worse when we retried injections. There wasn't a time when I wasn't on antibiotics and that really helped become my deciding factor. Because of the long-term and short-term side effects, Humira is now unfortunately labeled as an allergy in my patient chart. Shoot! The one drug that had my RA in remission and never had to worry about.
Honestly, I've had great experiences being on biologics and wouldn't change the way that any of it took its course and the timeline of when I started and stopped each of these treatments. I mean, the allergic reaction would have been nice to skip – and this was in the eaaaarly days of Humira, where it burned so bad during injection, that it gave a lot of people including myself anxiety. It's not like that anymore.
Anxiety about injection misfires
I also experienced a few misfires (2 in the office that the nurses first administer for you to observe), which made me so anxiety-ridden that thousands of dollars would just leak out of my thigh. And 2 times that happened, the pharmaceutical company sent 2 additional pens to make sure I had the full dose, as both were misfires and had been part of a manufactured lot that was to be discarded. This concept made going through the trouble and waiting in the patient telephone customer service queue worth the time.
Customer satisfaction and transparency are very important to me when it comes to such significantly expensive and serious medications like ours that we inject or have infused.
My Crohn's is finally in remission with a biologic
I'm now on a different biologic that has kept my IBD under the most control, though I still do significantly struggle with the extraintestinal manifestations of the disease. I've exhausted all but 1 option, that my doctors have said I would likely not have success with due to the type of Crohn’s I have (fistulizing/abscesses).
Your doctors will help determine which biologic may be the best and most convenient for you. My advice is to be open and ask the questions that you need to assist your decision-making. It should be a decision based on both of your inputs.
I'll forever be thankful for the fact that we IBD patients have these medication choices, as each works better for some more than others. No IBD is the same in each patient. I'm thankful I’ve had access to them, as well as qualifying for assistance programs that have brought the most way down – something that has and will always stress me out about such high-tech medications.
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