I had been on Remicade for 8 years and was supposedly in remission but was having lots of crazy unexplained symptoms for about a year or more. These symptoms included episodes of having an almost toxic reaction where I would have violent diarrhea for over an hour followed by severe migraines, chills, frequent urination, and sometimes muscle tremors. I was also having weakness and muscle spasms. We worried that I had developed problems to the Remicade but could never directly pinpoint it. After my last dose I had a severe reaction involving a major migraine, muscle fatigue and tremors, extreme nausea, and dizziness. My doctor took me off of it and we tried to see if I would stay in remission. I didn't and I ended up on humira. On my third dose I had a similar reaction. I was put on prednisone and since I was in the process of moving across the country I went a couple of months with no new drugs.
My new doctor put me on cimzia. I had an even more severe reaction. This time the reactions started with my first dose but my doctor wanted to try to keep me on it. Lots of severe muscle cramping, muscle fatigue, balance issues, dizziness, migraines, blurry vision, severe fatigue- which given that I have 2 small children was slightly terrifying, and nausea. After my third dose - which my doctor had me split the 2 injections by 1 week to see if I could handle it better- I thought I was going to have to go to the hospital. I was having problems staying conscious, I had a fever, and I could barely stand. The cimzia also made my whole body ache almost all the time especially my hands and feet. What amazes me is that my current GI is at UCSF and involved in lots of the research and studies that are being done and yet I feel like my side effects were not being taken too seriously and almost like they weren't that normal or common.
I am so sorry for everyone who has gone through these neurological side effects to these medications. I started Remicade not long after it had been approved for crohn's and I know that I was never warned about possible neurological side effects. Now every time I see commercials for any of the Tnf alpha inhibitors I notice that it is listed very quickly in the list of serious side effects. Now my doctor wants me to start stelara and there has been no mention of neurological symptoms but I know it listed as a potential side effect. The good thing is that my insurance is denying the off label use and I'm pretty sure that I won't qualify for the financial support so hopefully I won't have to make the decision myself to potentially risk another severe neurological reaction. In general I think I just want to be done with medications. I hope my experience helps other people realize that if they are having what feels like neurological symptoms they are not crazy. When I first went through it with the Remicade I thought I was going nuts.
