NYU Langone Researchers Report What Happens When Multiple Sclerosis Patients Abandon Treatment

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A team led by researchers at the New York University (NYU) Langone Medical Center recently assessed what happens when clinically stable patients with multiple sclerosis (MS) stop taking their medication and found that almost 40% of them experience to some extent a return in disease activity and related symptoms. The results of this study were presented on April 22, 2015 during the American Academy of Neurology Annual Meeting being held in Washington, D.C, Poster Session V – P5.192 entitled “Doctor, can I stop my medicine? Analysis of disease course after stopping disease-modifying therapy in stable MS patients.”

MS is a chronic, progressive neurodegenerative disorder that results from the attack on the central nervous system by the body’s own immune system, causing inflammation and damage to the myelin layer that covers and protects neurons. Myelin loss leads to impairment in signal transmission along nerve fibers, affecting motor function (like coordination, balance, speech and vision), causing irreversible neurological disability and partial or complete paralysis. It is estimated that more than 2.3 million people in the world suffer from MS.

Disease-modifying medication can help in the management of MS by reducing the symptoms and slowing disease progression. According to the National Multiple Sclerosis Society (NMSS), some patients, however, abandon medication due to related side effects, the fact that they still have exacerbations, the perception that they are not feeling better or due to insurance reasons.

“Decisions regarding stopping disease-modifying therapy may have implications for short and long-term prognosis. We know a lot about what happens when therapy is started, but we know very little about what happens when therapy is stopped,” noted the study’s lead author Dr. Ilya Kister in a NYU Langone press release.

The events that occur once a clinically stable MS patient discontinues therapy are poorly understood in the medical community. In this study, researchers conducted a multi-site, international analysis with 181 MS patients from the ongoing, observational database MSBase Registry and assessed rates of disease relapse and disability progression in patients who had abandoned treatment. Participants were aged 40 or older, had a stable disability progression for at least 5 years with no relapses and were under disease-modifying medication for at least 3 years. Once patients discontinued medication, they were followed-up for at least three years.

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Researchers found that after stopping medication, 24% of the patients had a clinician-reported relapse, 32% had sustained three-month disability progression and 10.6% experienced both relapses and disability progression. After a median of 22 months, 42% of the patients (77 individuals) restarted treatment, which was found to be linked to a 59% reduction in the risk of disability progression.

“Despite long periods of disease stability while taking medication, we found a large minority of patients who stopped, experienced relapses or disability progression,” concluded Dr. Kister. “We need to identify situations when it is safe for patients with MS to stop taking these medications.” The research team suggests that further studies should be conducted on the discontinuation of therapy in MS patients to determine when it might actually be a safe option for the patients to stop their medication.

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Patrícia holds her PhD in Medical Microbiology and Infectious Diseases from the Leiden University Medical Center in Leiden, The Netherlands. She has studied Applied Biology at Universidade do Minho and was a postdoctoral research fellow at Instituto de Medicina Molecular in Lisbon, Portugal. Her work has been focused on molecular genetic traits of infectious agents such as viruses and parasites.
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  1. Carrieann Wase says:

    Dx 2007.
    5 lesions showing, started Rebif right away, quit taking it two years later. Never gone back on any med. All lesions gone since 2009. Feel no change since Dx.
    Not sure if MS was correct dx for me.

  2. kathy says:

    I stopped taking rebif over a year and a half ago. The side effects seemed to be keeping me in bed longer after every injection. I read the book Breakthrough by Suzanne Somers after seeing her on Dr Oz. I started reading food labels,taking vitamin D and magnesium and was finally able to walk around without a walker. I went from being bed bound to now walking 7 miles a day with the velcro weights around my wrist. My daughter put music on my Ipod so it’s fun. I see an acupuncturist for pain management and he gave me corydalis to treat the pain. It’s as strong as oxycodone but with no side effects or addictive qualities. You can purchase corydalis on amazon but the acupuncturist medicine is more concentrated. I think I have heald myself…not cured but heald. I was so bed bound …63 neurotin a week plus 3 rebif injections, hydrocodone for the pain, promethazine for the nausea from the pain medication. Now I take one medicine for the muscle spasms and that’s it. I’m not drugged all day or sick in bed. I got my life back on my own. I pay attention the the foods I eat. If I can’t pronounce it, I don’t eat it. Organic also. People may think that the homeopathic avenue is quakery but I am living proof nutrition heals the body. Did you know nutrition and it’s effects on the body are not covered in medical school. I always thought, he’s a doctor he must know what the best medicine is. How many times did I walk into a doctors office and come out with two more perscription “see how this works, come back and see me in 3 months” I wanted to know why I was having headaches not take another pharmaceutical. Turns out it was one of the perscriptions. That was my turning point. Too much medicine. I don’t eat anything with preservatives and I have been researching foods. I lowered my blood pressure by drinking Grape juice and including walnuts and watermelon in my diet. The Dr gave me a blood pressure perscription. Just because they went to medical school doesn’t mean they have the right answer. They are taught which medicine goes to which disease. I’m living proof ms doesn’t have to immobilize you. I am living proof certain foods, supplements and exercise will make you feel so much better. This worked for me and I’m so thankful I saw that episode of Dr Oz on that day. The latest mri also showed no new lesions. …I must be doing it right.

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