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Old 10-25-2012, 02:58 PM   #1
Join Date: Oct 2012
Posts: 3
loffrem09 HB User
Unhappy Discouraged with my orbital pseudotumor/ocular myositis

I was diagnosed back in May with an orbital pseudotumor. My doctor started me out on 120mg a day of prednisone and i have been gradually trying to reduced the dosage. I am now on 40mg of prednisone and have had (5) steroid infusions of 1G each back in june bringing my total dosage of the pred so far to 14700mg. I am also taking 15mg of methotrexate once a week, but nothing seems to be helping. I recently went to a rheumatologist who did a bunch of blood work looking for the cause of this and got no answers, other than my liver levels aren't good and i have a positive rheumatoid factor of 33....The doctors now want to take me off of the methotrexate and replace that with cellcept. My neurologist is also suggesting IVIG infusions, but my insurance company is denying them saying there isn't any information supporting that it will help my condition. I am just getting frustrated because I want to be off of the steroids, I have had every side effect from them (moon face, stretch marks, weight gain, rash, etc...) but every time i drop my dosage down my eye tends to revert back. I am now dealing with the constant every day pain and the white of my eye is now starting to get large again. I guess i'm just wondering if anyone has had any luck with IVIG infusions and/or cellcept when dealing with this condition. Any advice/words of encouragement would be appreciated.

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