Tolosa Hunt Syndrome

[Ski68]

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.
Thank You,
Ski

[DrNoopurMD]

Hi,

Steroids are the mainstay of treatment of Tolosa hunt syndrome and bring a dramatic relief in symptoms. But they have to be taken for a prolonged period of time and tapered off very slowly. I think you may need to continue on steroids for a little longer before you can taper them off completely.

[Jener8tor]

My husband has an unconfirmed dx of THS. What I mean by that is that we have not been able to confirm it on an MRI. However he has/ has had all the symptoms and his neurologist has ruled out everything else. His Dr believes that the reason it is not showing on the MRI is because of the Prednisone is making any inflammation. His symptoms started what we thought were severe migraines, nausea, etc, but he didn't respond to normal migraine meds. He has also had facial numbness, blurred vision/ double vision, 6th nerve palsy (eye paralysis), and he responded to prednisone immediately! He is been on daily prednisone for over a year now. At the beginning he was on step down therapy 3 different times, however after a few days of finishing each time, the pain would return. He has been on Prednisone 40mg daily for about 10 months. His Dr wants him to come off the Prednisone completely and be off for 2 weeks then retake the MRI. We tried that by slowly reducing him to 35mg, but even by reducing it by only 5mg, the paind returned after a few days, so he went back up to 40mg again. Just like another poster said ... from what we've read, you should be able to come of prednisone and be pain free! My husband had gained approximately 50 lbs and has battled thrush several time because of the prednisone. The only other "treatment" I've read is radiation. I talked to his Dr about it, but she said she would rather manage his pain in other ways, but needs to get him of prednisone first. At this point in time, he would have to take a leave of absence from his job or quit, because coming off prednisone would completely debiliatate him.