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I went in for Cimzia injections today. Most people don’t have to go in the office for injections, but I’m participating in an aftermarket drug study. Every two weeks I make the one hour trek south to Atlanta where I go to the Atlanta Gastroenterology Associates Infusion/Research Lab. I submit diary cards that explain (in great detail) my symptoms daily since my last visit. They take a urine sample, vitals, numerous vials of blood, then I receive two 200mg injections of Cimzia. Dr. Wolf comes in and goes over my symptoms since the last visit, previous blood work and tests, etc. He then decides if modifications need to be made to my dosage, if more tests should be run, or if anything else needs to change. I have to wait 30 minutes after the injections, then the nurse (Lamia, or Margaret- who are amazing and I can contact via email pretty much any time) takes my vitals again and checks the injection sites to make sure I’m not having a reaction.
A typical visit lasts an hour. If Dr. Wolf is busy it could take two.
If I’m tired when I go in (like I was today) the Cimzia amplifies my exhaustion almost immediately. If I feel good then it can take up to 24 hours for the “Cimzia sleepys” (as Jessica calls them) to kick in.
Last night I slept roughly 4 hours. So today, after my visit, I fell asleep in the car as my mom drove home. I slept in the car while she went in Costco to buy things in bulk. I came home and sort of laid around until dinner time. Then after dinner I fell asleep again. I’ll probably sleep most of the day tomorrow, but I’m ok with that.
I’m participating in another research study for Crohn’s Disease, but it’s just tracking the medical history of patients over time, collecting data to help other patients later on.
I have a number of other issues (migraines, allergies, chronic sinus problems, skin problems, weird birth control issues, etc.) so I hope the information they collect from me can help other people.
When I started this drug study I was at my worst since I had been diagnosed. Frequent bm’s were one thing, but I was having debilitating joint pain and I was constantly exhausted. When my right elbow was hurting I could still use my left arm. But when my hips started locking up I couldn’t walk at all without horrible pain, if I could walk at all. I had several vitamin deficiencies and I was frequently anemic.
I’ve had a lot of luck with Cimzia. I do take a higher dose, and the injections are administered frequently but I don’t mind. I feel better than I have in a long time. I still have bad days and trigger foods. I still have exhaustion for no reason. But I have more days where I can do something besides sleep all day. It’s been fantastic after six years of gradual decline.
Hopefully my positive response to Cimzia will continue. I’ve been on this drug for six months, and I hope I can continue using it for much longer. I’m not sure what I’m trying to accomplish by writing this out, but now it’s out there.
I hope the rest of you suffering from Chronic Illnesses get to have more good days, because those are the ones we live for.