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Anyone out there with Autoimmune inner ear disease (AIED)?
Autoimmune Diseases | Last Active: Oct 31 6:20am | Replies (228)Comment receiving replies
I have RA. I started 1 1/2 years ago with swollen hands and joints. My rheumatologist put me on prednisone low dose. Swelling went down to almost nothing. RA doctor put me on plquenil 200 mg twice a day. and methetrixate 8mg pills once a week and folic acid 1mg a day. I have tinnitus since 2004. My hearing in left ear not so good. Had cold and at 34000 ft. On plane ride Ears would not pop. Had to have dr. Pop left ear drum. I put afrin up my nose when I fly but still tinnitus 24/ 7. My ear dr. Wants me to get hearing aides but have not yet. Dr. Has me take water pill. Diamox. What I worry about is all the pills I am taking. Methetrixate, plquenil, folic acid and now the water pill . My RA dr. Does blood work to check my kidneys and liver and so far I am good. My RA is under control. I had a hysterectomy for endometrial cancer 1 1/2 years ago. Caught early. Then last Oct. I found breast cancer in left breast after mammo said neg. Ultra sound said neg. I felt it and diag. With ILC 11mm. Had lumpectomy and ultrasounds. ILC in breast does not show up with mammo. So will have mri from now on with hydration iv so dye does not tear up kidneys. I am worried about taking all these medications for RA that I have to take. I am worried that my liver and kidneys are going to get lesions. I drink lots of water. But I wonder if my dr should prescribe hydration infusion
monthly? Do you know? And would my Medicare and secondary pay for it?
Replies to "I have RA. I started 1 1/2 years ago with swollen hands and joints. My rheumatologist..."
Oh my! You are taking a lot but RA is bad to have. I could not take Methotrexate , I tried but had a bad reaction. If your body is tolerating the drugs and your blood work comes back good i wouldn’t worry. I also had breast cancer. My daughter had a mammogram that was clear but she could feel the lump. She has a friend who is a breast cancer doctor and he treated her for an aggressive type. We must be our own advocate. I also have tinnitus and have trouble at higher altitudes like Denver.
Low salt, no aspartame and try some of the apps for meditation with Tinnitus.
Call medicare or get on the website and ask about an IV infusion. They are always helpful when i call.
There are newer RA medications with less side effects but cost more. I understand how you feel. I’m happy to chat anytime.
Lynne
Whatever it takes to slow the inflammatory response because the inflammation damage is worse. I'm on so many drugs I need alarms on my phone to remind me LOL but so far liver and kidneys doing OK. Good luck to you.
If tinnitus is a concern, I highly recommend you check out a good set of hearing aids (not a "miracle ear" device etc). I bought a cheap set and regretted it. Once I got really good aids, the tinnitus didn't disappear, but it sort of moved to the background. Plus the masker option was helpful when sleeping, but it is hard to sleep with hearing aids in (mine have custom molds). The additional hearing gain I think helped.
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I am off the prednisone now. Took for 6 months. Ra controlled by methetrexate 8mg pills once a week. Plquenil 200mg twice a day, folic acid 1mg once a day. Blood test once a month to check liver and kidneys. So far good.