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Trista Message
20 Oct 2011, 07:54 PM

What medications are you on or have you tried? How is it or did it work? Any side effects positive or negative from them? Any tips to survive the side effects? Please assume I am stupid and don't know the short hand for the names. I have tried the immuran and anti viral combo, and rotuxin, both with no positive results. Right now I am on metheltrexate and folic acid, still waiting to see if it works. I respond well to the iV methelprednisolone, but we are trying to move me to the oral prednisone instead. Every time I try to go off the steroids I have a flair-up and land back in a wheelchair. Then have to start the healing process over again and so I want to know what others have done.
KarenAL Message
24 Oct 2011, 07:07 AM

Trista, Hello there lady! I have tried a few things... mostly medications to treat symptoms. I had been successful using IVSM (IV SoluMedrol) until about a month ago. I had/have a major flare up going on causing horrible optic nerve pain. While, the IVSM helped soothe the optic nerve (for the most part), it did nothing else. I'm usually able to see a huge difference in my daily life and this time I didn't. So, the neurologist that I'm seeing (hopefully only for a short time longer) has suggested we try IVIG (Intravenous immunoglobulin). So, I'm in the process of waiting for Medicaid to hopefully approve me. If not, then, I will fight for it. I know how to do that (my husband and I both went to medical assisting schooling). Other than that.. like I said, it's all a symptom management thing.