Lemtrada gained FDA approval in November 2014, and Thomas began treatments March 2
Donnie Thomas said he remembers the first time he experienced multiple sclerosis symptoms like it was yesterday.
“I was 30,” he said. “I’d been to the driving-range over the weekend and when I came back the following week my hand was numb, it was just kind of a funny feeling.”
Thomas, a Winchester native, visited his family doctor and was prescribed two-weeks worth of Celebrex, an anti-inflammatory drug.
“The feeling didn’t go away,” he said. “So I went back and (my doctor) told me there may be something else going on.”
His doctor referred him to a neurologist who performed brain scans and MRIs that revealed Thomas had lesions on his brain.
A spinal tap confirmed Thomas has relapsing-remitting multiple sclerosis, the most common type of the autoimmune disease that causes the body to attack the insulating membranes (myelin) that coat nerves in the brain and spinal cord.
MS can cause numbness, weakness, vision trouble, balance problems and other symptoms, depending on which parts of the central nervous system are affected.
RRMS patients experience attacks that cause new or worsening symptoms, which are followed by remission periods where the disease does not progress.
For Thomas, who is now 45, the numbness was the only indication of the disease, and until 2010, he remained active, playing softball, tennis and golf and working full-time with nearly perfect attendance at Catalent Pharma Solutions, where he has worked for 22 years.
“Since 2010, I’ve slowed down some,” he said. “My walking has been affected.”
Despite taking a variety of medications, the MS affected Thomas’ right leg, making it difficult for him to walk and stand. He used a cane and a power scooter when it was necessary, especially at work. By the end of 2014, his condition worsened and walking became even more difficult.
For nine years, Thomas took an injectable drug called Avonex and has tried nearly every oral medication for MS.
“None of it seemed to work,” he said.
Around three years ago, Thomas heard about an innovative drug that could essentially stop MS in its tracks.
“My neurologist and I had been talking about this drug for a couple of years,” he said. “I first learned about it when it was just in the clinical trials.”
Thomas’ neurologist, Cary Twymann of St. Joseph Neurology Associates, was involved in the clinical trials of Lemtrada, a disease-modifying therapy for people with relapsing forms of MS.
Because Thomas hadn’t experienced success with other MS treatments, Twymann targeted Lemtrada for Thomas as soon as it was approved by the Food and Drug Administration.
“I didn’t have any positive results from other medications I was on,” Thomas said. “The Avonex was keeping me stable, but the side effects pretty much wiped me out a couple of days a week. I didn’t tolerate the oral medications as far as the side-effects, either. They upset my stomach and just made me feel terrible.”
Lemtrada gained FDA approval in November 2014, and Thomas began treatments March 2.
Lemtrada was originally used to treat B-cell chronic lymphocytic leukemia, and is designed to target immune cells.
Thomas said the drug works by attacking a cell-surface protein called CD52, which is found on T and B cells. In the process of “blowing up” the cells, it attacks cells thought to cause MS, Thomas said.
“What the hope is that since my body has been under attack from the MS for so many years, when the new T cells and B cells come back, they won’t be affected by the MS, and they will slowly start to heal my body, and my body will heal itself over time,” he said.
Thomas is the first MS patient in Kentucky to receive the drug, and one of the first 100 people in the United States to use Lemtrada, which he said has the potential to change the course of the rest of his life.
Thomas received intravenous infusions of Lemtrada on an outpatient-basis for five consecutive days, and will receive treatments again for three consecutive days in February 2016.
If all goes as planned, the drug will prevent Thomas’ MS from progressing.
His biggest concern was potential side effects that range from things like thyroid conditions or bleeding disorders to less-serious side effects like rashes, headaches, vomiting, fungal infections and joint pain.
Thomas’ immune system has been compromised, so he also runs the risk of contracting other illnesses more easily. He’ll also need monthly blood work for the next five years to monitor his thyroid levels and cell counts.
“Those are risks I was willing to take,” he said. “My nurse sat down with Melissa and me for several hours and told us about the possible side effects. But, amazingly, I haven’t had any.”
Thomas belongs to a Facebook group for other Lemtrada patients, and said their results have been similar.
“I haven’t read about one bad result,” he said. “Anybody that I’ve seen on the Lemtrada page, it’s been nothing but positive results. That’s why they call it a game-changer.”
Thomas said he was told not to expect any results until 4-6 months after his first treatment, but he has already experienced relief thanks to the drug.
“When I went to the hospital to get my first treatment, I had to be taken in by a wheelchair,” he said. “I had been off work or working from home for three to four weeks before I had my first treatment. I went in in a wheelchair on Monday and by my last treatment on Friday, I was able to walk out of the hospital by myself.”
Thomas’ wife of 22 years, Melissa, said she can see improvements as well.
By Whitney Leggett
The Winchester Sun