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BELLEVILLE, Ill. (AP) — Harold Johnson has a carved cane his father bought him from Mexico and a walking stick that's taller than he is.
"I love for them to get dust," said the 43-year-old Swansea man who was diagnosed with multiple sclerosis in April 2005. He used them for balance from time to time, but no longer needs sticks or his walker.
The experimental drug, Lemtrada, has kept his symptoms at bay since 2009. No wonder he's such a big proponent of the drug that's now being reviewed by the U.S. Food and Drug Administration.
Harold and wife Jessica live in a cream-sided home with their friendly dog Nippy, a miniature pinscher-Chihuahua mix that sometimes thinks it's a bulldog.
On a breezy, warm spring afternoon, Harold had just gotten home from his computer technology job at Southwestern Illinois College. Jessica, 32, was in the kitchen putting pats of butter between pork chops she was baking for dinner.
Life is good.
"I come home and I can walk long distances," said Harold. "I can ride my bike. Last summer, I'd ride my bike to SWIC and back. MS people have a problem with heat. I was able to ride during the hot summer."
Harold, a 1988 Belleville East graduate, learned he had MS after getting a scan of his back and neck. He had been in a bad car accident in 1995 and was still experiencing pain.
He was referred to Barry Singer, an MS neurologist then at Barnes-Jewish Hospital in St. Louis.
"They did a brain scan and found 23 lesions in my head," said Harold.
He learned that MS, a chronic disease, eats away at the myelin coating that allows nerve cells in the spinal cord, brain and eyes to quickly transmit messages. Sclerosis means scarring. People with MS develop scar tissue or lesions in response to nerve damage. Messages don't get through as easily. Symptoms may include problems with muscle control, balance, vision or speech.
The diagnosis was a shock.
"Nobody in my family had MS, nobody I know," said Harold, who has three older siblings. "It was a game changer in life. I'd been through a few things. I'm 43 years old. This was a major one. I began to appreciate my time here on this planet earth in ways I didn't think I would appreciate."
He was prescribed an interferon-based medicine. (Interferon is a man-made copy of a protein that helps the immune system fight infection.)
The next year's scan showed the lesions had doubled to more than 48. Harold was having balance problems and needed a walker or a cane.
"My right eye was going bad (because of an inflammation of the optic nerve). I was choking on food and water. It was difficult to take a drink of water. It would go down the wrong tube because the muscles were not working right."
Harold's symptoms scared Jessica, too.
"There have been times we were driving down the road when he had to slam on the brakes," she said. "He was choking. There was no way he could drive."
Barry Singer, now director of the MS Center for Innovations and Care at Missouri Baptist Hospital in St. Louis, has been treating MS patients for 20 years.
Of the 700,000 people in the United States with MS, the center sees 1,700 patients from the region that includes Missouri, Illinois, Kansas, Iowa and Kentucky.
Genzyme, the company that makes Lemtrada, tapped Singer to be part of clinical trials. He'd heard that Lemtrada seems to slow or stop the progression of MS. Patients who it works for are half as likely to have relapses.
"If the medication drops attacks by half," said the doctor, "the disease is much better controlled. It won't reverse long-term damage, but can really shut down the disease."
For the trials, Singer chose patients who weren't responding well to other medications.
Harold fit the bill.
He remembers the day Singer talked to him about it.
"Dr. Singer said, 'Harold, I think this would be a wonderful medicine for you.' I was used to doing shots three times a week. They would make me feel like I had the flu. By the time you're slightly better, it's time for another shot."
"I thought, this can't be the way life is going to be for me.
"But he did it," said Jessica.
Harold weighed Lemtrada's pros and cons. Risks included a drop in platelet count that means a potential risk of bleeding, and thyroid problems. Close monitoring curbs the risk, the doctor told him.
"I went along with my own personal decision," he said. "I knew pretty much I was going to die of choking. I would not be able to breathe long enough one of these times. I know everyone dies, but I didn't want to die early. ... I went for it."
He received Lemtrada at Barnes Infusion Center in December 2008.
"The stuff drips from a bag and goes into the body slowly over five days," Harold said. "I would go home every night. It was a difficult time for me."
But not for long.
"Here's the kicker," Harold said. "Within three weeks of the first dose, I felt great. I felt I had a new connection with life in a way I haven't felt since I was a kid. I felt like a baby growing up again. I guess MS was affecting me for a long time and I didn't know."
He had a second infusion the following year.
"After the first year's dose, they did an MRI and I had zero active lesions," said Harold. "That was absolutely amazing."
Was it like a miracle?
"I think it absolutely was," Jessica said. "He's able to stand up on these little structures at the park with one foot. It's amazing. Before the medicine, he had to use a walker and a cane. He didn't have energy."
"It's been a life changer," said Harold. "I want the FDA to approve it as an option for people."
Lemtrada has been approved in Canada, Mexico, Europe and Brazil, but not the U.S.
Harold went to bat for the drug last November.
"In Washington, D.C., I spoke in front of 150-plus people to the FDA committee, telling them my positive story of how Lemtrada changed my life for the better," he said. "Genzyme paid for my flight out there, but they did not pay for my time."
The FDA rejected Lemtrada in December, faulting the way drug trials were conducted, and saying the drugmaker didn't show the drug's benefits outweigh serious risks. The company recently resubmitted its application.
"This drug is one we desperately need for many of the patients with MS." Singer said. "It's a tough disease to have. Younger patients with a very aggressive disease, you want to shut it down so they can lead a full life with the least amount of disability."
That's what Harold is doing now.
He and Jessica go for walks. He builds experimental robots in the basement.
"That is a lot of fun. I can do my hobbies due to Lemtrada. ... I realize it's not a cure, but it's allowed me to live life the way I want to. I haven't felt this good since I was a kid. I am not getting younger, but I feel like I am."
Harold is eligible to receive Lemtrada through 2016.
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Source: Belleville News-Democrat, http://bit.ly/1lqSIAm
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Information from: Belleville News-Democrat, http://www.bnd.com
This is an Illinois Exchange story offered by the Belleville News-Democrat.
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