Humira: What Should I Know?

Hey there Andrea! I had a similar experience as the previous comment from Poppy. I started Humira right out the gate and it was truly life changing. I was living life and leaving AS behind me, or so I thought. At month 6 of Humira, I developed a rare allergic reaction where I started breaking out in hives and my stomach swelled and formed almost a pouch of fluid. I want to reiterate that this is rare! I was then put on enbrel and the hives came back and I had lesions on my leg at the last injection site for 5 months. It's been determined I'm allergic to all TNF inhibitors so we have moved on to DMARDs. My advice to anyone is to pay attention to your body, but don't be afraid of it! It truly can be incredible for those who tolerate it well! I hope your experience is a positive one and you can get some relief soon! -Katie, Team Member

I took Humira injections for six months, enduring several side effects (trouble breathing, burning and painful gums, hot/cold flashes). Then three shots of Enbrel- new side effect (developed 10 painful lesions on my scalp, currently waiting on results from dermatologist to determine if it’s plaque psoriasis or something else). I stopped the Enbrel. I don’t have any confidence in my rheumatologist- she completely blew me off when I told her the side effects (none of which I had ever dealt with). Told me I need to see a lung doctor, that it is not the Humira. (After being off Humira for a month, those side effects completely stopped!) I’m fortunate to live a couple of hours away from an excellent teaching hospital (UAB) and I have an appointment with a rheumatologist there though not until June.
All this being said, pay close attention to any changes in your body when you’re taking the medicine. Note any changes and tell your rheumatologist immediately. My dermatologist suspects that I may not be able to tolerate TNF blockers, which both H and E are, but that will be addressed at my rheumatology appointment in June. (Kinda sad that I’ve learned more from my dermatologist than the rheumatologist!) SO - be certain that you have a doctor you feel confident in and that you and he/she communicate well. And remember that YOU are your best advocate and you should pay close attention to your body! Best wishes.

Hi Andrea,

I have been on Humira for almost 2 years now. It has given me my life back. It slows the disease's progression and also reduces my symptoms.

As far as I know, there are no foods we need to avoid being on Humira.

One thing you should know is that Humira is an immunosuppressant, and makes you more susceptible to infection. We have to take extra precautions to avoid getting sick or getting infections.

I hope Humira brings you the relief that it has brought me. Let me know if you have any other questions about my experience using Humira.

Hey - I wanted to share a some more info on Humira that we have: https://ankylosingspondylitis.net/treatment/humira/.

Did you end up starting treatment?

Sending positive vibes your way <3