ear problems

[shadow]

Has anyone had problems with the bone in their ear? My rhum wants me off pred and I have been decreasing from 15 I have since had 2 tubes in the same ear, ENT has suctioned granulmasis tissue out and now I have Mastoidis and am seeing a surgon toclean ear and bone. Any suggestions? I'm also on way back to Cleveland clinic as I statewd if I'm getting off the. Pred my maint drug needs to be changed. Thanks for listening.

[pberggren1]

I have never heard of this before but I have total hearing loss now. Partly due to Wegs and mtx and an antibiotic called Amikacin.

[shadow]

Were you on the methotrexate when it happened or had you been off? I took metho for e years then chanded to cellcept. Have had some hearing loss in one ear but worse. Since nov.

[gurinbasra]

Coming off the Pred is great but it doesn't sound like the WG has been controlled - are you taking any immunosuppressants like Methotrexate or have you taken Rituxan? I have damage to my cochli's but I do remember I had a big relapse in 2009 where I had so much mastoid pain on my left side (I shudder when I think of it now) but I've never come across a situation like yours. Just make sure your WG specialist knows about any surgery you're going to have done.
Good luck!

[shadow]

Great news kinda no surgery. Ear surgon states wegs would just cone back and I would scar. Bad news pred up to 15mg again and looking for new rhum. Last one stated blood work good come down on pred even though ear flare. Hope I can find one as good as I had until ins. changed 3 years ago.