Stop In The Name Of Science?

In my two long short years of having MS I have been on two different drugs. Mainly because I decided to quit my first drug, why you ask? I’m a rebel.

Really, I was just tired of sticking a needle into my then, very fit body. So, after give or take 6 months of stabbing myself I decided this isn’t for me, said good-bye to the needles, and hello to drug free existence. It was great, at first. But 6 months of trying everything other than drugs, resulted in me shuffling into my Dr’s office, and him swiftly prescribing what I’m currently taking, Tecfidera.

Not a year later I came across a study and thought I would share.

Here’s the deal. A study was done where a group of people with Secondary Progressive Multiple Sclerosis, and Relapsing Multiple Sclerosis were taken off their DMT’s, (Disease Modifying Drugs). For those of you not in the know, or that might need a reminder – a DMT is what is needed to help those with MS help live their best lives. The MS center at Wayne State University defines DMT’s, as a drug that can modify or change the course of a disease. In other words a DMT should be able to reduce the number of attacks and/or also slow down the disease from progressing. [1]

 

Currently there are 15 DMT’s on the market with many still being tested and tried. There’s even a study going on in Canada using an antibiotic originally used for acne now being used for Relapsing Remitting MS, more on that one later! Now before you start fantasizing about your soon to be drug free life, lets talk more about this study overseen by Gary Birnbaum, MD – a MS specialist in the Minneapolis area.

“In most people with RMS, patterns of disease change over time. Acute Inflammatory changes, manifested as new lesions on central nervous system (CNS) magnetic resonance images (MRI’s) or as clinical relapses, decrease with an associated decrease in acute inflammation pathologically. There may come a time when an individuals disease no longer requires medicate to control acute inflammation.” [2]

Pretty interesting stuff huh?

Who participated?

All participants were under the care of Dr. Birnbaum at time of study.

The ages of participants of the study spanned from 49- 61, the majority being women, and were separated into two groups. 77 patients were in Group A, which consisted of patients whom had RMS previously but showed no acute CNS evidence for 2- 20 years and were asked to stop their DMT’s. And 17 patients were in Group B – that consisted of patients currently with RMS who voluntarily discontinued their DMT’s.

Both groups were scheduled for MRI’s, and clinical evaluations for 1 year after cessation of drug use. The minimum was 1 year of evaluation after cessation of drug use.

How was it measured?

In order for acute disease to be considered reoccurring there had to be a change, either on physical examinations or from MRI’s. Physical examinations if new symptoms that could be characterized as MS symptoms would occur – i.e. lasting longer than 24 hours without any evidence of virus, etc. MRI- detection of new lesions from imaging.

It should be noted all participants used the same imaging machines and their scans and all scans were looked over by the same neurologists.

Those that showed either of these characteristics were offered their DMT drugs.

And the winners are?

Group A, who now have Secondary Progressive MS, had a 11.7% recurrence of disease, with some having clinical changes and new lesions showing on the MRI, others although stable also had new lesions

Group B, who are Remitting MS had a 59% recurrence within 1 to 2 years of stopping DMT’s.

From this study we can gather disease progression makes a difference, but can age? If should be noted that participants in Group B were younger than the participants in Group A. So in answer to the question, in this case, yes it matters.

Older individuals, with no clinical or MRI evidence of RMS for 2 years or greater can stop taking their DMT’s with a very high chance (90%) of non-recurrence. This and other studies show that people who have RMS number of relapses over time diminish, along with MRI manifestations of lesions. Another interesting fact is that in most autopsies of older patients with MS show almost no signs of acute inflammatory changes, or lesions, according to pathological studies. But I’m getting off subject. The study came to the conclusion that it could be safe for older patients to discontinue their DMT’s if there are no signs of acute central nervous system inflammation for 2 years, without fear of recurrence of disease.

Whether you decide to stop your meds or continue to stay on them it is very important to seek counseling from your doctor. If you don’t currently have a doctor, the best place to start is with the NMSS.

 

 

 

 

[1] http://mscenter.med.wayne.edu/pdf/disease_modifying_therapies_for_ms.pdf

[2] Birnbaum, Gary,MD. “Stopping Disease- Modifying Therapy in Non relapsing Multiple Sclerosis, Experience from a Clinical Practice” International Journal of MS Care 19.1 (2017): 11-14 (Print)

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