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HIV optic nerve neuropathy
Jan 16, 2001

It's been 10 (or more)months since I was diagnosed with HIV optic-nerve neuropathy. The recommended treatment is a regimen being used for idiopathic or demyelinative optic neuritis. This involves 1.5 grams of methyl-prednisolone given intravenously in divided doses for three days followed by oral prednisone starting at 60mg/day. In a case of optic neuritis the dose of oral prednisone is tapered to zero over two weeks. In my case, my neuro-ophthalmologist would taper it to 20mg a day by two weeks and then continue letting my response, if any, dictate further dosages. I feel that my physicians are being very vague in this matter and I'm finding it difficult to make a informative decision without knowing the pros and cons of getting,treatment. I feel that I'm doomed either way. I have to assume that the possibility of going blind exist without treatment, or prepare to face an OI as a result of a suppressed immune system with treatment. I just need some information to base my decision on. Any input would be greatly appreciated. Thank you!

Response from Dr. Stryker

It does sound as though you are receiving the proper treatment for this difficult condition. This is a highly specialized area, so it is good that you have a specialist managing the situation. You are right that steroids present some risks, including immunosuppression, but this is a secondary concern compared to protecting your sight. Steroids are an important part of the treatment for several diseases in persons with HIV, including PCP. Depending on your overall immune function (and you don't give details on your viral load or CD4+ count), it may be possible to balance these concerns in a way that allows you to live pretty normally. Best of luck, RAS

Rick Stryker, M.D., M.P.H.

should I wait a little more?
Worried about nothing?

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