[Ellen McDonough]

Hi all,
I just weaned down on Cyclosporin about 5 days ago.I have this horrible headache over the left temporal area that hurts to touch or brush my hair. It hurts way worse with bending over and lying down. Got worse this afternoon. My left face is numb and the left jaw hurts to chew.I have worse tinnitus and some black spots in my vision.I have had these symptoms before but much less .Last March when I was weaning down on Cyclosporin I had this happen and had the left temporal artery biopsied for temporal arterititis which the rheumatologist thought was negative. My neurologist has had me taking Topamax which was helping but now is doing nothing. I am wondering if the weaning of Cyclosporin has done something. I was only taking 50 mg and weaned down to 25 mg but it is the ONLY thing different.I emailed my hematologist and he has asked me to contact my neurologist which I have emailed.I will have contact tomorrow I am sure. My hematologist doesn't think it is likely to be the Cyclosporin because iit is such a low dose but said it could be some "immune " problem.
I am just wondering thoughts. I weaned down to 50 mg from 100mg in November 28, 2012 so we have weaned from 100mg to 25 mg in less than 3 months.Maybe too quickly?? Just was wondering others thoughts? I am tempted to go back up on my dose on my own because I am afraid.
Thanks,Ellen