Hi. I'm a brand new member today. I'm told by my doctors that I'm a very complex patient, a dubious distinction! Among several other diseases, I have Giant Cell Arteritis and am currently on injections of Actemra, 162 mg. Initially, injections were weekly but due to very low white cell count and low neutrophils, am now going from bi-weekly to weekly, depending on my lab results. I Iost the vision in my right eye just prior to diagnosis, was hospitalized and given 3 days of 1000 Prednisone I.V., during which time I had a clot in my right leg and suffered 2 small strokes, one on left and other on right. This week, I've suffered a second clot behind my knee in my left leg. Currently on double dose Eliquis, 20 mg for 7 days and 10 mg thereafter. Broke out in painful multi mouth cankers this week.
Just FYI, was on gradually titered Prednisone until this November, along with the Actemra, which was started in November 2019. Anyone else with similar experiences?
That's enough for now!

Jump to this post