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EIMs / Switching Biologics?

Tue, October 15, 2024 9:36 AM

I've been on Humira for around 15 years. It's done wonders for my extra-intestinal manifestations, which include ankylosing spondylitis, uveitis, and autoimmune hearing loss. The AS and hearing loss have been in remission since I started Humira in 2009, and the uveitis has been in remission since I started taking Humira weekly in 2015.

Unfortunately, it's not adequately treating my Crohns. Despite being on weekly Humira, methotrexate, and sulfasalazine, my doctor is still finding inflammation on my colonoscopy. My calprotectin is 62, borderline normal, but still inflammation. When I went on methotrexate, it was 770, so definitely that med is working. My trough levels are normal and I don't have any antibodies.

My doctor wants me to switch from Humira to Remicade, with the hope of treating my Crohns and avoiding complications. I am scared that taking Humira away will flare my other conditions and possibly leave me deaf. I don't think Humira has ever adequately treated my Crohns. It's just not been the most dramatic of my chronic illnesses, and my docs haven't been that concerned about the minor amounts of inflammation I've had on my scopes. I know even minor inflammation can cause cancer or other complications, so I agree that we need to treat that. Also, the idea of my hearing loss flaring really triggers my health ptsd, reminding me of a time when I thought I was going to be disabled.

I feel like I should get a second opinion about treatment options, but I'm not sure how to proceed. I know a few doctors who offer telehealth, and perhaps could go in that way, but if anyone has any suggestions, I would appreciate that. Also: given the tests and my experience, I suspect my Crohns and EIMs have different inflammatory mechanisms. Has anyone dealt with this situation in the past, and has anything helped you? Many thanks.

rogerwhitson
Joined Oct 14, 2024

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