Two Women with Different Forms of Multiple Sclerosis Call Ocrevus a Lifesaver
Pamela Arterbridge noticed something was wrong back in 2013 when she woke up one morning, and her legs and feet were tingling.
Two years later, Lorraine Lee knew she had a problem when her right leg became extremely fatigued after every workout.
Neither realized their eventual diagnosis would be multiple sclerosis (MS).
Arterbridge, a 46-year-old, self-employed hairstylist from Columbus, Ohio, and Lee, 55, a registered nurse in suburban Austin, Texas, have different forms of MS. But both say Ocrevus (ocrelizumab) — an intravenous infusion therapy the U.S. Food and Drug Administration approved last month — has dramatically improved their lives.
No more injections
“Prior to the numbness and tingling, I was just really tired and drained all the time. My family doctor did blood work, and said I had low vitamin D,” Arterbridge told MS News Today in a phone interview. “A year later, one day, I woke up and felt sensations going up and down my legs. I went back to my doctor and had an MRI. When the results came back, she sent me to see a neurologist. I was devastated [at the MS diagnosis]. I was concerned that my career would be over.”
Arterbridge learned she had a lesion on her spine and three on her brain. Eventually, she was referred to Dr. Michael Racke, a neurologist at Ohio State University’s Wexner Medical Center and a pioneer in B-cell therapies for MS.
Like 85 percent of patients diagnosed with MS, Arterbridge was told she had the relapsing-remitting form, known as RRMS.
Racke put Arterbridge on Copaxone, which she began injecting herself with three times a week. It caused high fever, burning rashes, and other painful site reactions that sent her to the ER more than once.
During an April 2016 follow-up visit to the clinic, Racke suggested Arterbridge try ocrelizumab, an experimental drug developed by Genentech and marketed now as Ocrevus.
“At first I wasn’t sure if I wanted to do a trial drug,” she said, “but after talking with my family and my husband, I decided to go with it because Dr. Racke was so passionate about it.”
Since then, Arterbridge has had three Ocrevus infusions, half a year apart — and feels much better.
“It’s a very simple process. I go to the infusion center and I’m hooked up to IV. I just relax, and most of the time I sleep straight through it or I read a book,” she said, adding that not having injections three times a week is a huge relief.
“The fact that I only go every six months, and that I’m not on any other drug, is almost like MS isn’t really a part of my life anymore. I don’t have to worry about missing a dose. I have several clients with MS, and if they miss a pill, they have to start all over.”
Nine servings of vegetables
About 1,200 miles to the southwest, in the Austin suburb of Cedar Park, Lee — a registered nurse and the mother of two grown children — said she had always been in excellent health. For years, she worked out six days a week and followed a healthy diet.
“I wanted to be an example for other people,” she said. “But in October 2015, I noticed that after working out, my right leg was very tired. Then after resting it would be fine.”
When the other nurses told Lee something was wrong, she saw a doctor, who misdiagnosed her with ileotibial band syndrome (ITBS). Lee insisted she didn’t have ITBS because she wasn’t in pain.
When her symptoms worsened, she saw an orthopedic surgeon, who took X-rays and confirmed that her problem was neurological. Finally, she ended up seeing Dr. Edward J. Fox, a neurologist with the Multiple Sclerosis Clinic of Central Texas. An MRI and then a spinal tap confirmed that Lee had MS.
“Dr. Fox’s words to me were, ‘If you’re gonna have MS, this is the time to get it,’” she recalled. “He then explained about a new medication for PPMS [primary progressive MS], which is what I have. I was going downhill very quickly.”
In the space of three months — while waiting to get into a Ocrevus trial — Lee went from using a cane to needing a walker to get around. Spurred into action, she changed her diet, eating nine servings of vegetables daily.
Every morning, she blends spinach, bananas, strawberries and coconut milk into a shake, adding a touch of agave for sweetening. Her lunch consists of a large salad containing some combination of broccoli, carrots, peppers and tomatoes.
“If I had just waited for the medicine, that would not have been enough,” she said. “It’s intended not to heal, but to stop the progression. And in this case, I don’t think it’s just stopping it, I’m actually starting to improve.”
Lee finally received Ocrevus in March as a two-part infusion.
“It’s no big deal, but that’s because I’m a nurse and I’ve given infusions before. Now I’m on the other end of the needle,” said Lee, who now reviews medical records for the State of Texas. “They have an infusion room with a line of reclining chairs. They first give you a dose of prednisone, then an IV push like Benadryl to prevent reactions. Benadryl makes me sleepy. The infusion took four hours, and both times I was asleep for most of it.”
Lee’s only other health problem is osteoporosis. Although she was born in New Jersey, she spent a good part of her childhood and adolescence in Alaska. About 15 years ago, a blood test revealed she had a serious deficiency of vitamin D, the main source of which is sunshine. Sometimes she wonders if all those years spent in northern latitudes, where sunshine is often in short supply, might account for her MS.
The safety and money questions
Arterbridge and Lee are aware of the risk of cancer that is associated with Ocrevus.
“It does concern me, but I understand they’re always side effects with drugs,” Arterbridge said. “I’m doing very well, and pray that this is something that doesn’t happen to me or anyone else taking this drug.”
Lee said she’s not concerned, even though clinical trials indicated that cancer was a risk for PPMS patients like herself who take Ocrevus.
“When you’re regressing extremely quickly, you know that if you don’t get treatment, you will be wheelchair-bound,” she said. “I can now walk around in my house without a cane. Last year I could not. So to me, the benefits outweigh the risks.”
At $65,000 for two annual infusions, Ocrevus is expensive. Both Arterbridge and Lee will be receiving it for free as long as they’re part of clinical trials — but neither knows what’ll happen after the trials end.
“I’ll cross that bridge when I get to it,” Arterbridge said. “This is something me and my husband will talk about. Hopefully our insurance will cover it.”
“I don’t know what the insurance companies are going to say when they see the bill,” Lee said. “But I have a very supportive husband, and he said we’d do whatever we have to. At this point, I’m concentrating on too many other things right now to worry about that.”