RA and AIED (Autoimmune Inner Ear Disease)
I desperately need this site. I was looking for a support group or forum. My journey began with typical allergy symptoms and a feeling of off balance. Then I woke up with no hearing and a machine noise in my right ear. My equilibrium was so bad I couldn't even drive. I was diagnosed in March with autoimmune inner disease (AIED) due to RA. My RA attacks the small bones and vestibular system of the ear. Hence I have loss hearing, balance, equilibrium and eye acuity. I've been on 60mg of Prednisone, Planquenil, Metotextrate and Sulfasalazine with supplements. This greatly improved my symptoms. I started to taper off the prednisone and now I'm down to 35mg/day. But recently felt like my symptoms return. I had to go back up on the dose. I thought something was wrong with me and all the meds were a waste of time. This is not for the weak! As I am tapering down I feel awful. I'm weak, tired get headaches, lethargic and depressed. Will this ever end? In addition, I am getting so depressed. I have to learn to accept and live with hearing loss (bilateral) and loss of balance (I now have to use a walker) is there anyone else with AIED?
Do you have an RA energy vampire in your life?