To anyone diagnosed with Tolosa Hunt Sndrome.
I was diagnosed with Tolosa Hunt Syndrome in October 2008. It started with slight vision problems which then led to total double vision of the right eye followed by severe pain. MRI of the brain showed slight abnormality of the occular region of the right eye when compared with left eye. I was started on 80 Mg of prednisone and responded almost immediately. My sight went back to normal and the pain all but dissipated. I have been tapering off the prednisone ever since. I am currently down to 10 mg. I have occassional pain on the affected side. My neurologist keeps wanting to get me off the prednisone which I am more than open too, however I have tapered to 5mg twice and both times the pain begins to return. not as bad as initially but it does come back in some form. Has anyone else had this problem? I was under the impression once the symptoms went away I could go off, but from what I have read some individuals have been taking prednisone for quite some time. If anyone has info, please let me know.
Corticosteroids are the treatment of choice, usually providing significant pain relief within 24-72 hours of therapy initiation. Ophthalmoparesis usually requires weeks to months for resolution; indeed, ophthalmoparesis may not completely resolve in some cases depending on the degree of inflammation and the aggressiveness of therapy. For refractory cases, azathioprine (Imuran), methotrexate, or radiation therapy has been employed.
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