Why My Specialist Changed My Crohn’s Biologic Dosing and Frequency

Over the past few weeks, I’ve seen a lot of chatter across social media about Crohn’s medication hopping. If you’re unfamiliar with this concept, it’s where someone with Crohn’s disease will hop from one biologic to another before the medication may get a chance to work. The problem is twofold. Either the Crohn’s patient gets anxious that the med isn’t working, or their GI is not an inflammatory bowel disease (IBD) specialist and pulls them too soon. The medication is written off as not working when all it may have needed was more time. The fact that this is happening has long been acknowledged by patients in online communities. Thankfully, it’s gaining attention from specialists who have become active online.

Why does medication hopping happen?

Ideally, everyone with Crohn’s disease will get treatment from an IBD specialist. Or that they get treated by a physician who at least knows how to perform Therapeutic Drug Monitoring (TDM). TDM is where drug levels are tested and medication dosing gets adjusted using those results. But in the real world, we must work with what we have available and what is affordable.

Here’s how my specialists handled changing the dosing and sometimes performed TDM to treat my Crohn’s disease.

My first biologic infusion experience

My first biologic was an infusion which required 8-week-intervals for dosing. After induction completed, my GI had me go through two sets of regular 8-week dosing. She asked about how I felt at the 4, 6, and then 8-week marks. We determined that around week number 6, I felt Crohn’s symptoms along with Psoriasis and arthritis symptoms acting up. She then petitioned insurance to have the dosing moved to 6-week dosing. She started this early because we knew could take a few months for insurance approval.

I never felt like I was fully getting better or even near remission, but I felt better than when I started. This was a plus. My arthritis would slightly improve, but never truly stayed away. Bloodwork showed inflammation, but other counts were improving. It helped keep my hopes high for more improvement and doctor satisfied that it needed more time. Ideally, to further improvement a co-therapy drug would have been prescribed, but I was allergic to them all.

I remained on that biologic for over a year until I developed an allergic reaction. Once an allergic reaction occurs, your doctor may stop it or test to see if the reaction was unrelated. The test would look for antibodies and serum level. In 2013, it was very expensive to test for antibodies. My insurance company wouldn’t pay for it. My doctor took into account the allergic reaction was occurring during two other previous infusions and my symptoms increased early into the medication cycle. This was enough info to call it quits.

I then tried an injectable medication

The next biologic medication prescribed was in 2014. It was an injectable. I’m about to give you a good example of wanting to jump ship too soon.

For example, I did not show rapid improvements while on this medication. I barely showed any at all. After a couple of months, I was ready to jump ship. Not that there were other medications to try.

I felt lost.

I had conversations with my GI, rheumatologist, and immunologist. My immunologist gave a pep talk. “People like you do not fit onto a piece of paper. They don't include people like you in studies.”

Treating multiple conditions

It doesn’t sound peppy, I know, but I know what he meant. Multiple conditions treated by one medication are not looked at in traditional studies. He suggested a serology test. She had the blood test drawn at the end of the appointment. I knew the drill, antibodies would lead to ending the medication.

Results showed that there weren’t antibodies present and the serum level had room for improvement. He suggested an increase in dosing frequency, and the other specialists agreed. The injection moved from every 14 days to every 7 seven days.

Around the 8-month mark, I showed further improvements. High-five to immunology doc! I remained on the weekly dose for quite some time.

The medication had been working, but symptoms began to come back

Around 18-month on this med, I noticed that Crohn’s and arthritis symptoms were coming back mid-week. I also noticed not feeling right immediately after injecting. I had some wheezing and felt lightheaded. At the next rheumatology appointment, I mentioned this change. She looked at recent blood work and new symptoms and then decided to test again for antibodies and serum level. Since I always saw her on injection day the test took place during the appointment.

When the results came back in, we had the data we needed. I developed a high level of antibodies and had zero medication in my bloodstream. It was proper to part ways with the medication. It worked until it didn’t, just as the one before it.

Rapid response to my current medication

When I started my current treatment plan in 2016, I was what they call a rapid responder. I’ve never been one. I felt immensely good really fast. Injections took place every-8-weeks and I stayed that way for over two years.

At the 1-year anniversary, my IBD specialist tested the for the serum and antibody level as we did the previous drug. It was where she wanted it.

Around the two year anniversary of being on this treatment, she tested levels again. This time, my serum level was slightly lower. I acknowledged I felt some symptoms returning at the 6-week mark and my Psoriatic arthritis and Psoriasis were more present around the end of the treatment cycle.

Using TDM, my IBD specialist took into account my levels and symptoms. She moved up the dosing frequency. Another reason she wanted to boost it higher is in the event I get pregnant. She adjusted the dose to injecting every 6 weeks. This was not a fail, we considered it a smart adjustment. After a few months on this new dose, I had a colonoscopy. The images show the new dose is working as intended.

Fighting for insurance approval

However, insurance doesn’t see it that way. My office (me) and her office (staff) had to fight very hard to get the 6-week-interval injection approved. This approval, or in most cases a denial, is made by a medical person not familiar with Crohn’s or Psoriasis or Arthritis happening in one person. But that is a discussion for a different day.

Thanks to careful monitoring for antibodies and serum levels, my doctors were able to move me to a different medication at the proper time. I didn’t hit a dead-end when it came to medication options. This is happening to others when it doesn’t have to.

So, I’m glad it’s being acknowledged by IBD specialists online and I hope patients get the chance to become more active in their treatment plan.

Bottom line, be honest about your symptoms and don’t be afraid to ask your doctor to test.