Making the Shift to Biologics | InflammatoryBowelDisease.net

In the early days of my diagnosis, I was devastated that I might be on medication for the rest of my life. I was in college and very few of my friends were dealing with a chronic illness, and so very few of my friends were on any kind of pharmaceuticals. They didn’t understand my need for medication and neither did my family. At this time I was just on a gentle anti-inflammatory, mesalamine, but all too often I heard, when is that stuff going to fix you so you can get off of it?

Shame gripped me as I took my big pills once a day. Little did I know that a few years later I would end up needing more than these pills; soon enough, I’d get started on biologics, a class of medicines that terrified me at the time.

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Decreasing my medication

Though I went into remission on the mesalamine, I didn’t understand how vital the drug was for maintaining my health. A year or so after I started feeling better, I began to decrease the amount of the medicine I took, until I finally stopped taking it all together.

For a few months that seemed fine; then it wasn’t. I was, once again, fully flaring.

Because of this, I started on a drug called 6-MP which didn’t suit me well at all and put me in the hospital because my body couldn’t process it. It depleted all the white blood cells in my body until my immune system was wiped out. I was in a dangerous state, but somehow, probably because my ravaged immune system couldn’t go after the tissues in my colon any longer, I ended up back in remission.

Eventually, though, that remission ended too. This time around I was very ill and my gastroenterologist felt I didn’t have options other than biologics, which seemed very safe and very effective.

Shifting my perspective

I didn’t want to go on biologics because I’d heard they were “a more serious medication.” In all honesty, that perception probably came from the shame I’d experienced years ago when I’d started the mesalamine. Some of my family members had been relieved that I wasn’t on the type of medicine that would change the way my immune system operated. And I myself had been glad that I wasn’t “the kind of sick person who’d have to use biologics.”

Naively, I believed that being on anything but biologics meant that I wasn’t really disabled like so many of the others dealing with the same condition as me. But now, faced with another flare, I had to come to terms with my own body and what it needed to get better.

Plan to start biologics

Before I started the biologics, I talked to my doctor extensively about their safety and side effects. They explained to me that each biologic has different side effects, but anything they would put me on had been through extensive Food and Drug Administration (FDA) trials to get them ready to be given out to patients. Additionally, they would do regular testing to make sure my blood counts, liver function, basic metabolic panels and lipid panels looked good. If they saw any abnormalities, they would immediately investigate.

This was the plan, along with regular skin checks with my dermatologist to keep an eye out for skin cancer (which was something to watch for with the biologic I was on). This plan assured me that my doctors cared about my overall health and would take care of any problems that arose with the biologics.

Finding the right biologic for me

Since then, I have been on three biologics: Humira, Remicade/Inflectra, and now, Stelara. The truth is, finding the right biologic and right dose can be a challenge.

So far only Remicade/Inflectra has worked fully, and after a year or so it started failing me too. Still, that year was so meaningful as I strove toward living a full and rich life. And despite my continued search for the perfect biologic, I have found myself much more comfortable with the concept of biologics in general.

Focusing on my needs

The longer I’ve been on biologics the more confident I am that I made the right choice. I haven’t had any side effects except fatigue on the days I get an infusion or do an injection. I haven’t had to deal with taking big pills every day. Instead, I get to deal with medication on an eight or six week schedule.

I have had periods of remission on biologics that have helped me a lot and kept my hope strong for the future. Some around me, like friends and family, still make comments about my medications. Especially because of the ads they see on TV, but I now realize that they don’t live in my body and they don’t know how hard the struggle can be to deal with ulcerative colitis (UC).

Instead of listening to their assumptions about how bad biologics are for me, I focus on what I want and why. And for now, I want to be on biologics, because I believe they might make all the difference.

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Richard Faust Community Admin
Hi <inline-mention username="Eshani Agrawal" user-id="2483710"/>. You have probably seen me mention that my wife, Kelly, was diagnosed with a different autoimmune condition at age two (in her case juvenile rheumatoid arthritis). It is interesting how patients and the need for medications is treated and reacted to with age difference. People may fear for a child needing to take meds, but they don't question the child for taking the meds. Change that to someone in their early 20s and suddenly the questions abound. The diseases and need may be no different, but the perception certainly is and for no good reason. No one should be made to feel pressured or guilty about doing what is necessary to maintain their health. Concerning biologics, the history of the perceptions and fears and the reality is pretty interesting. In the early days there were, of course, a lot of unknowns. The fears of what these immunosuppressants would do and the potential side effects was understandable, but largely outstripped reality. Don't get me wrong, the potential side effects and impact on the immune system are real and any user should be vigilant. That said, they target specific parts of the immune system, so in many cases the impacts are less than the blanket immunosuppressants. An example of this was seen in the antibodies tests for COVID vaccines. People on biologics tended to not have issues developing antibodies, but those on more blanket immunosuppressants, such as rituximab or methotrexate, often did not develop antibodies. Sometimes the biologics may be safer than what they are replacing. Every person should make their own choices and biologics are certainly what one person referred to as a risk to risk ratio in relation to the conditions they treat. That said, those who immediately jump to biologics being bad may have good intentions, but don't really understand the nature of these conditions when untreated. Thanks for such a great thought provoking and educational article. Best, Richard (Team Member)
crohnsfree Member
 @ashwani
crohnsfree Member
After 15 years on biological I quit and took a holistic approach. No more pharma. They don't cure a thing. Since I did this I became free of the disease after 50 years. And now ten years later I'm healthiest I've ever been. Cut and drug was just a never ending wheel of suffering.
1. Eshani Agrawal Moderator & Contributor
 Hi <inline-mention username="crohnsfree" user-id="2238973"/>! Thank you so much for sharing your perspective. I certainly respect that you are no longer on biologics and that this holistic approach has worked for you. While I have not been suffering on biologics, I certainly understand that they are not for everyone. If you're willing to, would you share the holistic approach you took to manage your illness? How long did it take to work? -Eshani (IBD Team Member)