My ophthalmologist didn't like me being on prednisone either. My intraocular pressures seemed to vary depending on my prednisone dose. Whenever my prednisone dose was 30 mg or more my eye pressures were 30 or more. My eye pressures were asymptomatic so I had no idea how high they were.

My ophthalmologist still wants to treat me for ocular hypertension even though I'm off prednisone. Cosopt drops twice a day have been ordered even though my eye pressures are almost normal now. She was very nice and begged me to do the eye drops. She said my eye pressures could damage my ocular nerve and it would be too late to do much about it.

I always thought it was strange that the medication prescribed for GCA to save vision could cause permanent eye damage. There truly needs to be better options available for people with PMR/GCA.

I have been taking Actemra (tocilizumab) for the last 4 years. I was able to taper off prednisone within a year after Actemra was started. An endocrinologist intervened and told me to stop tapering for about 6 months when adrenal insufficiency was diagnosed. You won't know how well your adrenals are functioning until you can maintain a prednisone dose of 3 mg for an extended period of time. Actemra allowed me to be able to stay on 3 mg for as long as it took.

Eventually, the endocrinologist told me to stop prednisone when my cortisol level was "adequate." That doctor said I could take prednisone again for any reason if I felt the need. However, she wanted to know if I had the need for prednisone preferably before taking it again. She didn't require that I notify her first.

I needed to stop Actemra a couple of times but not because of an infection or side effects. Uveitis is another autoimmune disorder that attacks my eye. After I got off prednisone the first time, my ophthalmologist nearly cried as she ordered 60 mg of prednisone again for uveitis.. Fortunately, the uveitis responded quickly and it went back into remission.

A different biologic called Humira (Adalimumab) was tried specifically to prevent uveitis from happening again. Unfortunately, my pain returned after about 2 months on Humira and I got stuck on 15 mg of prednisone again.

That was when my rheumatologist told me to pick which biologic worked best for me. I chose Actemra.