(written by Raquel Rivas - Mayo Clinic in Florida)
When most of us think about eye problems, we think about a trip to the eye doctor for a new eyeglass prescription. But for Sandy Blue, a rare eye condition posed a mystery that almost left her blind.
Blue, then 44, first noticed red streaks in her eyes as she got ready for work one morning in 2008. She thought she was just tired, but her eyes got progressively worse. Eventually, “the white part of the eyes went red like apples. ” She saw a local eye specialist in Savannah, Georgia, and was treated with antibiotics for eye redness and pain that spread to her ears.
“I saw eight different ophthalmologists over the next six months,” recalls Blue. Different eye drops did not help, and her eyes became “cranberry sauce red” and painful.
Doctors started suspecting an autoimmune disease and tested Blue for rheumatoid arthritis, which can sometimes manifest as scleritis, a rare inflammation of the sclera, the white part of the eyes. But the results were negative and Blue continued to be in the dark about the disease that caused her eyes so much pain and redness. When the sclera started to bulge and the redness intensified, doctors in Georgia recommended prednisone for the inflammation, which caused weight gain and tiredness.
Desperate for an answer, Blue reached out to a reporter at WSAV, a local TV station in Savannah. The reporter ran a story in the evening news about Blue’s rare disease. Blue began to receive calls from strangers who sympathized.
“Even a blind man contacted me and told me about adapting to blindness – I didn’t want to hear that,” Blue says. Eventually, someone recommended a visit to Mayo Clinic, two hours away in Jacksonville, Florida.
She made an appointment with ophthalmologist Saiyid Hasan, at Mayo Clinic, still thinking the problem was a disease of the eyes. Following Mayo Clinic’s team approach, Dr. Hasan soon got rheumatologist Andy Abril on the case. Dr. Hasan was concerned about the sclera taking on a blue color that could indicate necrotizing of the eye, or the dying of eye tissue that could result in blindness. In the fall of 2009, Drs. Abril and Hasan worked together to bring relief to Blue’s eyes and pinpointed underlying rheumatoid arthritis as the cause of her rare problem.
“We have seen patients with long-term rheumatoid arthritis eventually develop an eye problem called scleritis, or inflammation of the sclera,” explains Abril. “But it is very rare to develop the eye problems before any symptoms of rheumatoid arthritis show up.”
After trying several medications usually prescribed for rheumatoid arthritis and determining that there was no other cause for the eye redness and bulging, Abril recommended rituximab, a cancer drug used to treat certain cases of rheumatoid arthritis because it targets blood cells that cause the immune system to attack connective tissue in the body. That treatment proved effective in fending off all the symptoms and restoring Blue’s eyesight and health. Blue had none of the possible side effects from the medication, which is administered via an intravenous infusion – like chemotherapy.
“I was frightened to put another drug in my system, but I knew I had to do it, and Dr. Abril really believed it was going to work,” Blue recalls. The redness and the pain went away and Blue was able to return to work, read, work on the computer, and “walk in the sun.”
“Ultimately it was God who gave Drs. Hasan and Abril the wisdom to stop an awful nightmare,” Blue says. She describes her difficult period of eye pain and blurred vision as being in a dark room, and contrasts that to living fully and enjoying the company of her two daughters, her grandson and her husband Tony, who was always there for her and who proposed while she was going through her illness.
Blue was relieved to get an answer after three years of wondering what was happening to her. “At the end of the day it was good to finally get a diagnosis,” Blue says. She knows her case is rare because it was only after her scleritis was under control that the symptoms of rheumatoid arthritis manifested themselves. She continues infusion treatments at Mayo Clinic to control the arthritis and has returned to full-time work as assistant city clerk in Brunswick, Georgia.
Blue and her husband Tony say they are grateful for the compassionate care and the friendships they have found at Mayo Clinic. But most of all, they are grateful to have each other. “I’m gonna be there for her regardless of what’s going on,” Tony says. “Now it’s great to see her doing a lot better, but the battle is not over yet.” They are thankful and hopeful the arthritis symptoms are gone and “will stay gone.”