Is anyone taking kineret

Hello @galanola, Welcome to Connect. @jjl670 mentions taking kineret for Autoimmune inner ear disease (AIED) in another discussion and may have experience to share with you. You might want to scan through other discussions and comments from members related to AIED. Here is a link that shows the list of discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=Aied

Your doctor might be able to give you an idea of how long the treatments usually take. Are you able to discuss your question with your doctor?

Hi @galanola. I’ve been taking Kineret daily since January 2022. My understanding is that I could be on it permanently, as it’s intended to be a steroid-sparing regimen (so I don’t also need to be on prednisone, which I’m very responsive to). I imagine it can differ person to person though. Your doctor should be able to give you a potential timeline and alternative plans if Kineret doesn’t work for you. Best of luck! Happy to answer any questions you have as best as I can!

Hi on prednisone also very responsive to, but coming off slowly
Kineret will take its place.
Any problems with kineret I see your taking since 2022
Are you taking it for Auto immune hearing loss

I haven’t had any side effects from it. I’ve tried several other medications and they’ve all given me side effects except Kineret, likely because it’s an injection and I’m sensitive to GI side effects. I have had to stay on a low dose of prednisone, though, and that might be long term.

Hi thank you
Currently on 20 of prednisone hope I can stop it
Do you have Aied and why do you still need prednisone ?
Sorry for questions

Yea, I have AIED. I was diagnosed in 2015. On other medications, I’ve flared every time I get to a low dose of prednisone. Kineret has allowed me to go the lowest on prednisone without flaring, but when I stopped the prednisone completely one time, I had a minor flare. So now I’m on 4 mg prednisone. It’s a low maintenance dose, but I don’t think everyone needs to be on a low dose—some people can stop it completely.

Thanks for answering
A flare is a loss of hearing?
I have profound hearing loss in right ear which occurred sometime in Nov/dec last year
Then in March I had hearing loss in left
Started kineret one week ago
Nervous about all the side effects long term.
Hopefully I will get some hearing back

Yes, when I flare I lose my hearing (particularly in my right ear) and I get dizzy spells. The intensity of my flares has decreased over time, though, thankfully. I don’t know how much data there is behind Kineret improving hearing loss as opposed to keeping it stable, but I’m sure your doctor should know that.