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Anyone out there with Autoimmune inner ear disease (AIED)?

Autoimmune Diseases | Last Active: Oct 31 6:20am | Replies (228)
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@becsbuddy

@teresaramirez I’m really having trouble understanding your steroid tapering. In USA we all taper slowly from 30mg to zero mg so we don’t have the problems that you had. I know you don’t want to be on steroids, but once you're on them, it’s important to taper slowly.
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923#:~:text=A%20gradual%20reduction%20in%20prednisone,a%20week%20to%20several%20months.
Your doctors may have an entirely different way of thinking and I certainly don’t want to contradict them. Just wondering if there is a connection between the steroid taper and the seizures you had.
Can you talk with your doctors about safe steroid use?

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Replies to "@teresaramirez I’m really having trouble understanding your steroid tapering. In USA we all taper slowly from..."
teresaramirez | @teresaramirez | Mar 9 4:36pm

I understand what you're telling me, but it was like this, my last week I went from 30 mg to 0 mg, and I've been without anything for 3 weeks now. It was 2 weeks later when I was having these strong fluctuations. Although even before the disease was diagnosed, without taking corticosteroids, I also had these tinnitus+pressure+dizziness fluctuations, although not as pronounced. Thank you very much for your replies. I appreciate them very much. Yes, next week I will go to the ENT again to see possible treatments. He also gave me the option of direct injections of corticosteroids into the ear. I will also try to go to the rheumatologist and see options. I would love to find something that would make me stable. This thing about being good for 8 hours, bad for 12, good for 12, bad for one day, good for another... has me very confused. Again, thank you very much

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teresaramirez | @teresaramirez | Mar 10 3:20pm

I correct, my dose of corticosteroids was 60/45/30/15 mg/day/week. I don't know why I thought I had taken 120 mg, no, how crazy.

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