I have been on rituxan since August( 2 treatments) and due To Multiple flairs of my ON, lots of steroids. Since Id say thanksgiving Ive been on IV Solu Medrol 2x and once with a medrol dose pack alone to avoid the IV for a time.
Two days after completing the pred taper after my last IV solu med I Had a severe attack starting with my good eye that than hit my bad eye. There on my bed, unable to see... not able to comprehend this was happening... off to the hospital I went. 5 day stay.. oh joy.
I Got out of the hospital 2 days ago. I have limited left sided mobility, but I can get around. My good eye is slowly returning but still have alot of distortion. Im on diamox for the pressure sensation . My bad eye hasnt been functional for years now. Im on the medrol dose taper now rather than pred because the pred rips me to shreds and in the last 6 weeks Ive been on a ridiculous amount of steroids. My knees and hips are affected and I need PT now to deal with the lovely effects of the steroids on my joints .
At this point, my neuros are at odds with one another. One thinks go to a different immune suppressant and the other wants to continue to give Rituxan a chance. My CD 19/20 level is at zero. So my one neuro said.. its doing what it should , but not proving any benefit. My other thinks give it more of a chance. I think I dont want to go blind waiting to see ! Ok if thats not a loaded statement... go blind waiting to see!
Can you please share with me what meds you are on to treat your NMO? CellCept, Imuran, Azathioprine? And how your response has been .... thank you ..donna
Two days after completing the pred taper after my last IV solu med I Had a severe attack starting with my good eye that than hit my bad eye. There on my bed, unable to see... not able to comprehend this was happening... off to the hospital I went. 5 day stay.. oh joy.
I Got out of the hospital 2 days ago. I have limited left sided mobility, but I can get around. My good eye is slowly returning but still have alot of distortion. Im on diamox for the pressure sensation . My bad eye hasnt been functional for years now. Im on the medrol dose taper now rather than pred because the pred rips me to shreds and in the last 6 weeks Ive been on a ridiculous amount of steroids. My knees and hips are affected and I need PT now to deal with the lovely effects of the steroids on my joints .
At this point, my neuros are at odds with one another. One thinks go to a different immune suppressant and the other wants to continue to give Rituxan a chance. My CD 19/20 level is at zero. So my one neuro said.. its doing what it should , but not proving any benefit. My other thinks give it more of a chance. I think I dont want to go blind waiting to see ! Ok if thats not a loaded statement... go blind waiting to see!
Can you please share with me what meds you are on to treat your NMO? CellCept, Imuran, Azathioprine? And how your response has been .... thank you ..donna
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