Wegeners affecting Optic Nerve

[Kodiak]

Hi, my husband was diagnosed with WG about 3 years ago. His was lucky, I guess you would call it lucky, because changes in his vision sent us running to the Opthamologist and then the neuro-opthamologist who then made the diagnosis after 5 very scary days in the hospital. My husband had lost all vision in one eye and most in the second before he was admitted and started on Iso-medrol infusions. His vision quickly recovered and then he continued on high doses of prednesone and cyclophosphamide and finally Immuran. He was almost off all drugs this past year when it recurred. Again his vision has been affected and we are starting all over again. This time with infusions of Rituxan. He has had two 1000mg infusions within 2 weeks time. No change in the vision yet??!!. Has anyone else had WG in the brain affecting the Optic nerve?? Have they had Rituxan?? Does it work?? What next?? So many questions!!:sad:

[Dirty Don]

Welcome Kodiak...hopefully you will find many answers here to your concerns and questions. There is a huge amount of knowledge and experience on here. Don't know much about the eye concerns, but the rtx takes some time to be effective. I'm on mtx, but people on here and an acquaintance who are on rtx said it can take up to 5 to 6 weeks...and then it has been a godsend. Best to you and your husband.

[annekat]

Welcome, Kodiak. I'm sorry you have a reason to come here, but I'm glad you did. I wish I knew more about the eye stuff, the optic nerve, etc. My WG has been the more common sinus, ear, and lung involvement, with some joint pain thrown in, and I've used Cytoxan and methotrexate, but not Rituxan. I know there are people on here who have had eye involvement of various sorts, from red and watery eyes to very serious involvement. I guess it is worth mentioning that I know an 82-year-old woman with another type of vasculitis, Giant Cell Arteritis, which I know is different than WG, but they are both vasculitis.... anyway, she did lose her vision permanently in one eye, I think from involvement with the temporal artery and optic nerve, though my knowledge is extremely limited. I heard she was treated with very high doses of methotrexate, and have no reason to think that was the best possible treatment. However, aside from being blind in one eye, she is now doing fine and is only on prednisone at this point. I'm sure someone will respond who knows more than I! But I look forward to hearing more about your husband's progress with treatment. I hope his sight can be saved in both eyes!

[Hal]

That is scary but I too was experiencing sporadic vision loss in one eye three years ago prior to being diagnosed. I must have caught it in time, since my eye was experiencing patchy "greying out" in my field-of-vision. At the time this was just before I was diagnosed, so my inflammation readings would have been high, with sinus and ear involvement. I suspect it was the inflammation in those ares that were affecting my vision / optic nerve. It all cleared up once I started getting the drugs. For me only the passage of time will determine out that plays out. I, though, still take 175mg of Azathioprine per day, and my doctor (and me too) is content to keep things as-is for now, since the risk of increasing inflammation is too high without the meds. So, having said all that, I might ask his doctor if they tried to taper off the drugs too quickly? Maybe he needs more time on Imuran, maybe a long time? Hope the vision returns though as this is something that really spooked me when it happened.
Hal.