GOSHEN, Ind. — After 10 years of living with multiple sclerosis, Tiffani James was out of options.
She’d take her many medications every day, without fail, and for a time, she’d go to work every morning. But as the symptoms progressed, James, a Goshen resident, had to quit her job and struggled with day-to-day activities.
She’d get tired after her morning shower.
She was very forgetful and she’d confuse her words.
She’d shake all the time and she used a walker.
Palsy had caused the left side of her face to drop and she went blind in her left eye.
The entire right side of her body was numb.
James was 39, and she was dying.
Then, thanks to a seemingly miraculous turn of events, things changed. She received a treatment that has yet to be approved by federal authorities and it seems to have made the difference.
“I feel like I could run a marathon. I’d like to try to run a marathon,” James now laughs.
‘SCARED ME TO DEATH’
Multiple sclerosis is an autoimmune disease that causes the immune system to attack the nervous system and eat away at its protective covering. Since it can attack any part of the nervous system, it can affect any part of the body. The disease affects women two times more than men and the cause is unknown, as is the rate of progression from person to person.
James’ medication, Tysabri, and many others, she explained, put her at risk of permanent disability or being reduced to a vegetative state due to a brain infection potentially caused by the drugs. “It scared me to death,” James said in a recent interview.
She’d begun taking Tysabri because other medications weren’t working, but soon, even that wasn’t helping. “I was getting worse,” she said.
She did more research, encouraged by her Elkhart doctor, neurologist Eliud Irizarry, and learned of Richard Burt, a hematologist at Northwestern Memorial Hospital in Chicago who specialized in immunotherapy and autoimmune diseases. His 20-year-old clinical trials had yet to be approved by the Federal Drug Administration, but James was certain the procedure he offered — autologous hematopoietic stem cell transplant, or AHSCT — was her best hope.
“If you’re to the point where you’re like me and you’ve failed with all the other medicines, what else do you have to lose?” James said.
Her hope turned south with the realization that she had no way to pay Burt. She was mulling a trip to Mexico to get the treatment there, using funds from a disability insurance payment, when suddenly a new option emerged.
“The most miraculous thing happened,” James explained. “I got put on Medicare.”
Burt accepts Medicare, the federal health insurance program, so James applied immediately to take part in one of his clinical trials. That didn’t pan out, but Burt didn’t stop trying. He volunteered to try the procedure on James through a program that lets patients who are not approved for clinical trials to access procedures or medications in the final stages of trial.
Hematopoietic stem cell transplants are relatively new though not unheard of in cancer and autoimmune disorders. But Burt’s version is unique because it significantly reduces the risk of rejection of stem cells and infection caused by stem cells since the patient is only receiving cells from their body, not from someone else.
In all, the procedure, requiring shots to stimulate red blood cell growth and more, takes a month. James’ own stem cells were eventually harvested from her neck. After a rough five-day dose of chemotherapy to get rid of the MS, a process that also tore down her immune system, she got the stem cells back, on July 27.
“Then you kind of just hang out and wait for them to grasp,” James said.
The Multiple Sclerosis Foundation estimates that 400,000 people in the United States and about 2.5 million worldwide have MS. AHSCT is just one of many treatments available, and many worldwide have tried it out.
‘I AM CLIMBING A MOUNTAIN’
If all goes as planned, the stem cells will help reboot a patient’s immune system, combating MS. But James went through more treatment, including two platelet transfers, as well as plenty of uncertainty.
“There’s a lot of roller coasters and you’re on a lot of steroids all the time to help suppress your immune system and keep you healthy all the time,” James explained.
She returned home in August, and though recovery can take up to two years, she has already experienced improvements.
“I felt the right side of my body for the first time in 10 years,” she said. “I’ve weaned off so many medications already. I took a medication for tremors … don’t need it anymore!”
It’s more than she could have hoped for. “All I wanted to do was be able to see my kids and walk with my kids and have fun with my kids again,” said James.
But the story isn’t over. James now has another goal – to fulfill her mother’s dying wish after she was cremated and spread her ashes on a mountain in Utah. Before, that probably would’ve been impossible. But not now, not after her treatment.
“I am going to get better, so I can climb the mountain and I can spread my mother in Utah. She’s in this box and she doesn’t want to be in a box, she wants to be in the mountain,” James said. “Very soon, I am climbing a mountain.”
Source: The Elkhart Truth, http://bit.ly/2cL1zk0
Information from: The Elkhart Truth, http://www.elkharttruth.com
This is an Indiana Exchange story shared by The Elkhart Truth.