A person opens a door and steps out from darkness into a bright landscape in the dark clouds there is an auto injector and infusion medication in the bright clouds are pills

Strolling Down My DMT Memory Lane

I remember feeling the emotional mix of joy and relief on July 13, 2007, upon receiving my RRMS (relapse-remitting multiple sclerosis) diagnosis. I knew something was wrong, yet it took six years to finally know what it was.

That mix of joy and relief turned to panic, fear, and dread as the conversation went on. And then, as I was presented with a plethora of oral information about my new diagnosis and a huge binder full of written material on multiple DMTs (disease modifying treatments) for my review, confusion and uncertainty set in.

Choosing a DMT

I was overwhelmed, yes, but I recall one thing I was told in particular. That was that these DMTs were no cure, but they were designed to slow the disease's progression. And, pretty much, with that I was sent off to make my decision to decide what DMT might "work" best to slow the progression of MS for me.1

Looking over allll that information with my family, we selected Rebif. I really don't remember every deciding factor, other than there were two DMT's that seemed 'popular' (Avonex and Rebif). I felt the reviews of the latter were more favorable at the time from what we could decipher through the literature and reviews. Unfortunately, it did not result in being so favorable for me.

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Regretting my first choice

After months and months of auto-injecting myself with this treatment, I was suffering no less relapses than I was prior to its start. I was also enduring bouts of paralysis. Which, incidentally, was the last straw for me. My doctor had been encouraging a different DMT for me along the way, and I finally agreed.

The DMT that my doctor wanted for me – one which I was determined to not consider, despite great reviews of effectiveness – was Tysabri. This particular MS treatment is an infusion rendered once every four weeks. What frightened me about it was its well-known side effect of potentially developing a fatal brain disease, PML (progressive multifocal leukoencephalopathy).2

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Trying another DMT

However, after consulting with my mother for reassurance and praying for positive results, I began Tysabri. I was pleased with my decision. MS was still in my life, but minus as many exacerbations. And, in general, I felt pretty 'good' during these years. And it was several: almost six years actually. But the doctor had to take me off of Tysabri.

When taking this DMT, the risk for developing PML was heightened by three factors: A weakened immune system, length of time on Tysabri, and testing positive for the John Cunningham virus (JCV). This virus is normally harmless to a person without MS, but it can heavily impact those with MS in some cases. Over time, my blood work indicated a positive reading for JCV, but the index was low.2

As my antibody index range rose, and I'd been on Tysabri longer than two years, the increased risk could not be ignored. I had to stop the infusions.

Evaluating where things are now

Post-Tysabri, I didn't immediately begin another DMT. In fact, I did not begin another treatment for a year. I often wonder if that had any impact on the course of my MS. I'll never really know.

When I was ready to begin another treatment, I accepted my doctor's recommendation, which was an oral medication, Gilenya. I take a capsule by mouth once a day and have been for approximately five years. About three years ago, I transitioned into SPMS (secondary progressive multiple sclerosis). Does this suggest Gilenya isn't 'working'? I don't know that either. But this is where I'm at in my MS life with my DMT usage.

My doctor says at age 54, I may have or am approaching a plateau where things will pretty much remain the same. He even said some patients at this stage make the decision to cease taking a DMT and just continue with their symptom management drugs. Considering everything along the way relative to my DMTs, I say for now, I'll comply with the old adage: "if it's not broke, don't fix it." Gilenya it is and will continue - for now.

Treatment results and side effects can vary from person to person. This treatment information is not meant to replace professional medical advice. Talk to your doctor about what to expect before starting and while taking any treatment.
This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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