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Medication Russian Roulette

I have RD of the inner Ear. I was diagnosed in March 2016. This is severe and each day costs me to loose my hearing, balance, vision, and equilibrium. I now wear two hearing aids and need a walker. I was immediately treated with 60mg of Prednisone, Planquenil, sulfalazine, Methotextrate and supplements. These drugs have given me little relief. I am having a difficult time tapering off the steroids. I am down to 35mg my symptoms worsen if I go lower. I recently began to develop a rash on my upper torso. I was given a topical cream and sulfamethoxazole. My face and neck has swelled to a point I do not recognize my self in the mirror. My mouth and throat have sores and are sore. I notice white fuzz on my tongue.) Come to find out I have (Thrush) I was prescribed Ketoconazole. If it is not one thing it is another! These meds are doing a number on me. This disease is so unpredictable and relentless. Scheduling and timing these medications can be a challenge. Taking medication is like playing russian roulette. I wonder is it all worth it? In the mean time I’m still suffering, each day robs me pieces of myself. I’m rolling the dice, praying, hoping the Rituxan Infusion will be the answer. I’m hoping my body will be able to handle Rituxan. Do you feel like you’re playing Russian Roulette? Anyone else have problems managing medications?

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  • Kelly Dabel moderator
    3 years ago

    Hi pinpinny, thank you for reaching out and sharing your story. Sorry you are going through all this. You are not alone here! Many in our community can relate to what you’ve described with your symptoms and medications and I hope others will respond here as well. I’d encourage you to speak with your doctor about your concerns and also don’t forget about talking to your Pharmacist. Your Pharmacist can be a wonderful help in managing medications. In addition to speaking with your doctor, this article, The Medication Game, and the community comments at the end, may be helpful to you:
    Also, here is some advice on tapering steroids that may be helpful: and information on Rituxan:
    Please let us know your questions and how you’re doing. Wishing you some relief soon. Kelly Dabel, RD – Team

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