Anchorage woman benefits from experimental treatment for multiple sclerosis
Anchorage resident Amanda Loy's life has changed dramatically in the last decade. From being so ill she was afraid to carry her son in her arms to competing in marathons, it's safe to say her life has taken a one-eighty.
She credits an experimental treatment using stem cells she received nearly seven years ago with banishing the symptoms of her multiple sclerosis.
Loy was diagnosed with the disease in 2007. She was 27 years old and had no family history of the illness. It took her completely by surprise.
"Looking back, I probably had symptoms at least two years before that," Loy said. "Like some numbness in my arms and legs, but I had no idea what it was."
Multiple sclerosis is an autoimmune disease that attacks the brain and spinal cord. An MRI showed Loy had multiple lesions on her cervical spine, a symptom of MS. Before long, she said, her disease was taking a toll on her family.
"It was hard having a young child. At that time, we had stairs in our home, so carrying him up and down the stairs worried me because I fell a lot," she said.
Loy was put on a regime of drugs, including a monthly infusion she said was billed to her insurance company for $10,000 every month. Despite that, her symptoms got worse.
"I started having bladder problems and my balance was really bad, requiring the cane more often," she said.
Loy's search for better treatment led her to Northwestern Medicine in Chicago, where Dr. Richard Burt was conducting an international study to determine the efficacy of using a patient's own stem cells to rebuild the immune system and stop the progression of symptoms for people with a form of relapsing MS.
"What we did is just give them a very short, intense burst of immune suppression over five days," Burt said. "And then give stem cells to help the patient recover rapidly. And, about eight days later, discharge them from the hospital with no further therapy."
The study was conducted using 110 patients in the U.S., England, Sweden and Brazil. Of those, 55 were randomly assigned to drug treatment therapies while the other 55 were given the one-time stem cell procedure. Loy was initially assigned to the group that received only drugs, but became eligible for the stem cell transplant after her symptoms continued to worsen.
In June 2012, Loy checked into the Chicago hospital where she was given several rounds of chemotherapy drugs to wipe out her immune system. After that, her collected stem cells were returned to her body to essentially grow a new immune system. She said she noticed improvement right away.
"Before I left the hospital, I was off of one of my bladder drugs," Loy said.
Once home, things continued to change for the better.
"It was little things. Like I didn't have to sit down to get dressed," she said. "In that first year, I feel like I had all these big improvements of my symptoms, so that one by one, I stopped taking all the medications I was on before."
Seven years later, Loy is practically symptom free. Her score on the MS Disability Status Scale, used by doctors to rank the severity of symptoms, is down to zero.
She isn't alone. Dr. Burt followed his patients for five years and found those who received the stem cell treatment did significantly better than patients who received the drug therapy. Burt's study was published Jan. 15 in the Journal of the American Medical Association.
Loy, who is now training for a marathon, said the procedure altered the course of her life.
"It doesnt work for everybody," she said, "so I feel pretty lucky that it worked for me."
While it's possible her symptoms will return, after seven years she no longer thinks about relapsing every day.
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