Serious things have happened to people taking these medications. Serious things include, headache, diarrhea, sensitivity to light, unexplained wounds, bleeding out of your eyes, growing an extra limb, hovering/flying/floating, hearing voices in your head, tooth loss, hair loss, limb loss and tingling in your toes. Some people have reported falling in love with leaves, having conversations with their pillows and strange dreams in which they became king of the universe, and becoming obsessed with cats. If you experience invisibility, heat vision, and super strength, please contact your doctor immediately.
The “B” Word: Biologics
While these side-effects (for the most part) are completely fictional, taking a new medication is always scary. Our bodies are all different, so just because one person finds relief from these medications, doesn’t mean you will. On the same token, just because someone develops a vicious side-effect from these, doesn’t mean you will.
Even though I was not guaranteed to have any harsh side-effects from the biologics, I was definitely afraid to try them. I fought it for years. I refused to try something that could potentially kill me. I was also afraid of the aspect of a weakened immune system in which I could contract a number of infections or even–gasp!–cancers. There were also no guarantees that this medicine would work, so that made me resist even more. All the while, my immune system was damaging my colon even further.
I tried medicines, home remedies, diets, natural supplements, etc. Nothing helped. And I was getting desperate. We were down to the wire. Biologics vs. surgery. In the beginning, biologics won out. I finally relented and began my Humira treatment.
My first injections… yep, that’s plural
I went to my GI’s office so that the nurse could teach me how to administer the drug. My husband came with me because I knew that I was going to need help. Especially in the beginning. My heart was racing and I was emotional. Emptiness and helplessness kept coming to mind… like I had been defeated.
The nurse, Kathleen is her name, talked to me about the drug and the risks involved, but also told us of many success stories of how people with IBD found so much relief after taking biologics. I tried to drown her out in thoughts of sorrow. So many treatments had failed me… why should I even try?
She handed me an ice pack to numb my abdomen. Humira is known for it’s painful injections and I was nervous. I was to receive four injections that day (the starter dose)… and I have a fear of needles! Kathleen explained how the injections should be done and then pinched my skin as I began to tear up at the thought of defeat and she punctured my skin with the needle.
OUCH! That SMARTS!
It felt like a wasp sting. Tears fell from my eyes, but not from the pain. My abdomen burned and I apologized for being a big baby. Kathleen smiled and said, “Even the big men come in here and start crying. That’s what gets me!”
Kathleen gave me the next injection, and my husband watched closely so he could follow suit. He did pretty well for his first time giving injections. Then Kathleen put band-aids on the pin-prick puncture wounds on my abdomen so that my blouse wouldn’t get stained with blood. After heaving a sigh of relief, I left the office feeling more hopeful.
I wish I could say that Humira put me in remission like it has so many others, but it didn’t. After two months of Humira, we tried Simponi. That didn’t help my symptoms either. Humira was in my monthly regimen for four months and by that time, my body had grown accustomed to the steroids. Whenever I tried to taper, I was sent into a raging flare. It was miserable. Even Prednisone was starting to fail me.
Each Experience is Different
Just because biologics didn’t help me, doesn’t mean they won’t help you. I have several friends who swear by them and always tell me that biologics gave them their life back.
If you are in the process of considering trying them, I recommend that you do. If you’re afraid of growing an extra limb (like I was), I’d say push through the fear. Because you never know… it just might work and to me, that’s better than suffering from a debilitating disease.
