Negative Experiences and Concerns with Biologics

Online posts most commonly discussed the negative aspects of biologics (55%).24 The most frequently discussed topic revolved around side effects that patients experienced because of the medicines. Individuals commented on specific side effects such as fatigue, rash/skin problems, infections, hair loss, and headaches. They also mentioned their concerns about potential side effects, increased cancer risk, pregnancy safety, and a weakened immune system. Below is an example of a social media post from an individual who had significant side effects as a result of taking biologics:

I have been on [Biologic X] for over a year and while it seems to be helping my Crohn's disease, I can't stand the reactions anymore. The first few infusions ended me in the hospital with flu like symptoms, and then I got sick during another one and they gave me some drugs to counteract the effect. Now for about 7 months I have been breaking out with horrible burning rashes on my hands and feet and nothing takes away the pain.

The possibility of developing cancer was also an important issue discussed by individuals either taking or considering starting biologic therapies:

I am quite nervous about starting this medication. Although I know that the Crohn's needs to be treated, the potential side effects of [Biologic X] that I have read about scare the heck out of me. I have read that people of my age/sex are more prone to the cancer side effects. I'm worried about working on one problem and starting a whole new one.