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Autoimmune Diseases | Last Active: Aug 5, 2023 | Replies (28)
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Hi..thanks for your reply. It was really appreciated. I have been in a flare since having covid december 2021. Nothing has worked. The drugs all caused major side effects and kept me very ill. The last one was Budesonide ...horrible side effects and then I finally found a doctor and he gave me a tapering dose so I could get off of it. They want me on Entyvio ..which scares me due to the risk of a brain infection and major loss of hair. Wondering about the LDN and side effects, I am a long hauler and dont want anything that will affect my UC. Thanks so much for your help. Kitty2
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I’m not familiar with those side effects of Entyvio, but then again I’m not very familiar with Entyvio. I wonder how common they are. Maybe there are others on the forum who take it and could share their experience while you’re considering options.
I’m sorry this happened to you. For what it’s worth, I have long COVID and/or COVID exacerbated my existing conditions too =/
LDN could be worth a trial because there’s almost nothing to lose—it’s very unlikely it would make the situation worse, except delaying a medication like Entyvio if you really need it means your IBD could get worse… But there are very few side effects, the ones there are, are pretty mild, and it’s such a tiny dose and has a short half life that you can easily stop immediately and adjust after it’s out of your system in a few hours.
LDN is also being used for long COVID, so that’s another thing to consider—it might help if long COVID triggered the flare? There’s also a supplement called NAC my doctor told me about that’s being used for long COVID. It’s over the counter, taken 600 mg. There’s preliminary research out of Yale on it. They studied the benefits on brain fog, but NAC is an antioxidant so it’s possible it could be improving other things too and would be easy to get.