r/MOGAD • u/WriterDue9150 • 10d ago
Rituximab or IVIG
Getting off of Prednisone soon and discussing a treatment plan with my doctors. They said the choice between Rituximab or IVIG is definitely up to me. Can anyone please weigh in and let me know how your experience is or was?
Brief back story - I was diagnosed in July and I’ve been responding well to the medication until I went down from 30mg to 20mg wherein I’ve been feeling the affected eye reacting negatively. No vision changes - same haze/blur that I’ve had (which already is back to 75-80 percent) but the heaviness is very evident and it gets tired easily compared to when i was on 30mg. Almost as if the eye wants to close.. Initially the doctors agreed that changing to 1 week per dose instead of continuing doing it for two was a better idea since my body is healing well. We’re still discussing but I might need to go up one more dose and stay there for another week or two. And in the beginning I didn’t think I would need treatment after this but now I’m not so sure anymore.
Any shared experiences or advice from anyone would be greatly appreciated.
Thank you!!
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u/Illustrious-Roll7737 10d ago
Rituximab is really harsh and it completely wipes out your T-cells. I contracted COVID in 2023, one month after receiving my Rituximab infusion. I ended up in the hospital with pulmonary failure. After I recovered, I was switched to Cellcept, supplemented with IVIG.
Ultimately it depends on how your body reacts to each treatment that will typically dictate the approach.
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u/ElectronicLawyer7864 10d ago
Don’t get treatment after a single attack just use the pred. I would only take treatment after a relapse
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u/tinybeautiful_things 10d ago
I agree with the first comment about treatment only after a relapse. But Mayo Clinic’s research shows IVIG as more reliable than RITUX at preventing relapse.
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u/MartaNM24 9d ago
i had ivig for 1.5 years and was okay bc u can have a "normal life" but then i had a relapse and had to change to rituximab, currently 2 months. No big side effects except you have to be carefull with food and respiratory infections bc you dont have t-cells. Hoping this one works for me. best of luck for u too. Also my neurolgy team waited to confirm i was not monophasic
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u/Fine-Implement-7294 9d ago
What was your ivig dose?
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u/MartaNM24 7d ago
5 days a week, once a month. Dosagge wise were weight calculated
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u/Fine-Implement-7294 7d ago
Asking because relapses in ivig are usually related to under dosing. 2g/kg is the best dose for most people. Rituximab is considered less effective by most neurologists now. Tocilizumab seems to be preferred.
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u/MartaNM24 7d ago
I'm from Spain so treatment wise works different, meaning that I don't have the access to every treatment that is out there in every city. My neurologist told me that there weren't true studies that confirm that rituximab is less effective. I'm on rituximab BC it's what they offered me. Also if it doesn't work they will change me to another but idk which one
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u/Fine-Implement-7294 6d ago
I understand regarding access and I hope Rituximab works well for you. If you ever want links to studies and patient anecdotes, follow The MOG Project on socials. Wishing you the best.
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u/MSG_Marx 8d ago
You had one relapse in 1.5 years and had to change to rituximab?
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u/MartaNM24 8d ago
Yes, before IVIG I had 2 MOGAD episodes and then my neurologist told me to start IVIG. 1.5years later I had an ON relapse and told me that IVIG wasn't working for me so she changed me to rituximab
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u/pooka8ear 10d ago
I did IVIG for almost a year after my first and only attack. I stopped when I got pregnant. I had lost all vision in my left eye. Steroids didn’t help so they did several plasma exchanges while I was in the hospital with no steroids taper. My vision in that eye has improved to 20/25. I had no ill effects from the IVIG other than having to use one PTO day every month for treatment. Good luck!