GCA and Tapering

Close to 18 months ago I was diagnosed with GCA and Temporal Arteritis. My Drs. believe this caused an Ischemic Stroke which has severely damaged my vision. I have been on Prednisone and Methotrexate for close to the past year. I just started on Actemra and on Wednesday I took my second injection. Here in the area where I live there are not a lot of choices for Drs. who are familiar with little known diseases like I am dealing with and my Drs. are struggling to manage what I have.

I have already permanently lost all vision in my Right eye and I only have about 30% vision in my Left remaining. I am understandably nervous, concerned, and more than a little afraid. I do not want to go totally blind but I have a feeling that is the direction I am headed in. It seems like all I ever get is bad news. Every time my Drs. change the drugs I am on or adjust the dosages I lose more of my vision. They say is it "side effects" and will ease once my body adjusts but I never get back all of the vision I lose before the dosage change or the addition or subtraction of a drug. My Drs. tell me their goal is to get me off of the Prednisone or to get it to a very low level.

The Actemra has been the absolute worst. Within an hour of my taking it I lost to blur haze, and darkness at least half of the vision that I had left and again I am concerned, worried and afraid. I want to hear from people here in this group who have dealt with this. Ones who have tapered down off of the drugs. Did any of your vision come back or was it lost forever? If vision came back how much do you estimate came back? I am at a point right now where I am exhausted and tired of fighting and ready to tell my Drs. that I am at a point where I am coming off of all these drugs and just going to go blind. Anything is better than this Witch Doctor false hope that they keep trying to shovel into me. Any thoughts or experiences are appreciated. Thank you.