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On Humira - Brain Lesions (demyelinating disease)

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Posted 3/12/2023 9:05 PM (GMT 0)
I have been on Humira for over 15 years and it has served me well with very few side effects. Last year, I began experiencing dizziness and headaches, so I had a brain MRI which showed 50 brain lesions (demyelinating disease). Doctors were suspicious of MS. I recently had a lumbar puncture and thoracic spine MRI and labs, which were negative, so my results are inconclusive for MS. Whether Humira was the cause or not, I now have to discontinue it. Prior to Humira, Remicade gave me drug-induced lupus. Doctors are recommending I go on Stelara or Rinvoq. I am terrified to get on any biologic now. Has anyone gone through a similar experience? Thank you!
Posted 3/12/2023 11:05 PM (GMT 0)
No similar issues that I can speak from. Just wishing you well going through this ordeal. I can say that Stelara works differently than other biologics. Do you have a treatment option for the lesions they've discovered? Hopefully someone here can give you come direct answers.
Posted 3/12/2023 11:11 PM (GMT 0)
Thank you so much for your reply and well wishes! It's definitely been a scary time. After consulting with a general neurologist and an MS neurologist, both feel that my brain lesions are inactive and don't require treatment at this time, but I will continue to have annual brain and thoracic spine MRI's. They are hoping that by discontinuing Humira, this will prevent any future lesions from developing. However, if I develop any MS like symptoms then I will most likely need treatment.
Posted 3/13/2023 3:00 PM (GMT 0)
Hi LisaLee, I did some digging around on the web & found an old study dated back in 2009, that Humira can cause this issue, the odds were like 0.2 in this happening with an anti-TNF such as Humira. The study said once Humira was stopped in a matter of a few weeks all symptoms disappeared.

Stelara is not an anti-TNF blocker, it's completely different. Please keep us posted.
Posted 3/13/2023 7:19 PM (GMT 0)
That's super scary. When I took Humira back in late 2019/early 2020, I developed some really scary side effects once they moved me up to weekly injections. I had a very scary lightheaded or almost passing out feeling almost all day, every day. It would start shortly after I woke up. It felt like I was constantly about to pass out. And I also developed debilitating migraines and Aleve stopped working to treat my headaches. Aleve had worked my entire life until I went on Humira and now it still does nothing 3 years after getting off that poison. I have to take a migraine medicine now for even smaller headaches. I stopped the Humira and my side effects resolved in about 2 weeks, thankfully. It was pretty debilitating and scary. Doctors didnt know what was going on. My bloodwork was all normal and they did an Echo test, heart was normal. They didn't scan my brain. I wasn't even on Humira all that long. I think 3 or 4 months total.

I've been on Xeljanz now for 1.5 years with no side effects.
Posted 3/13/2023 8:45 PM (GMT 0)
Susie, thank you so much for your research. Yes, that is what we are hoping for that by discontinuing Humira will stop any further progression of brain lesions.

Sara, so interesting that you experienced lightheadedness and headaches too! I also would get the feeling like I was going to pass out. So odd that I was on it for over 15 years until developing those side effects too. I am relived to hear that your symptoms resolved after stopping Humira. My last injection was at the end of December and I am starting to feel a little better.

Thank you everyone for your replies. Very helpful!
Posted 3/13/2023 11:38 PM (GMT 0)
Yeah, they were the worst migraines of my life to the point I could barely leave bed for days. I was in too much pain and too nauseous to drive to the ER 40 min away, I live alone and was seriously scared I might die. I'm really sorry you are having to go through this! How scary.
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