Relapsing MS and All That Goes With It By Chad, Husband, Father, Software Engineer • April 12, 2018
After a relapsing MS diagnosis, some things are bound to change. Some for the better, some, well… not so much. First, we get to be a member of an exclusive group of hearty souls. This band of brothers and sisters truly understand each other—and know something like being tired isn’t just a figment of our imaginations. From in-person support groups to online blogs like this, our special bond is something we can always rely on.
Of course, along with being inducted into this exclusive bunch of determined folk, there are also some not-so-pleasant aspects.
One of my least favorite things
A particular thorn in my side (and probably yours, too) would have to be the MRI that my neurologist asks me to undertake annually. I mean, seriously. Who looks forward to lying perfectly still in a very expensive, cylindrical-shaped tube that produces a cacophony of loud thuds and clicks? Not to mention that for some, this leads to feelings of isolation and extreme anxiety.
Why do we put up with this? Does an MRI make us feel better? Can we expect a miraculous curative effect on our bodies? The answer to those questions is a resounding NO.
So why do we do it? The real reason is to have a medical assessment of our disease progression. And why is that important?
We know we have this disease. We know how we feel. We know about different treatments. But we can’t always see the signs of disease progression, so we need to let our neurologists take a look at what’s going on inside our bodies.
One of my favorite things
I think it’s safe to say that most of us in this group are on some kind of treatment—and if that treatment is LEMTRADA you’ll need some additional monthly monitoring, which will happen from after taking your first LEMTRADA treatment, until 4 years, or longer, after your last treatment course.
I can’t stress enough how imperative it is that you follow your monitoring schedule. The types of monitoring include things like monthly blood and urine tests, as well as yearly skin checks.
Recently, this monitoring proved its value, as it revealed that I was starting to have an issue with my thyroid function. I talked with my healthcare provider about this before starting treatment and understood that thyroid problems were a possible side effect. I also learned what to expect and what we’d do about it if that were to happen.
My healthcare provider referred me to an endocrinologist, who did more tests and started me on a pill to counteract the problem and any symptoms that might occur. My invisible thyroid condition could have easily been overlooked if it weren’t for that testing, so if I wasn’t before, I definitely am now an advocate for the Risk Evaluation and Mitigation Strategy (REMS) Program required testing. To me this side effect is worth the tradeoff of no relapses and my disability not progressing after taking LEMTRADA.
LEMTRADA can cause serious side effects including autoimmune problems, infusion reactions, some kinds of cancers, thyroid problems, low blood counts (cytopenias), serious infections, inflammation of the gallbladder without gallstones (acalculous cholecystitis), and swelling of lung tissue (pneumonitis). Because of these risks, LEMTRADA is only available through a restricted program called the Risk Evaluation and Mitigation Strategy (REMS) Program.
An added bonus
I’ve also made a couple of new friends, including my MS One to One Nurse, Denise, and my traveling phlebotomist (my lab tech), Gary, who I see or talk to once a month. In fact, Denise has attended a run I participated in, and Gary even sent me a holiday card!
One thing I learned
We all learn many things throughout this journey with RMS.
No matter which treatment you take, knowing how your disease is progressing and understanding how it affects your body and ultimately your mind is vital. It can help you and your healthcare provider make informed decisions concerning your care. And at least in my experience, being an informed patient has helped me with my RMS.
What lessons has relapsing MS taught you? Have you met new people? Maybe you tried something new that had a positive influence on you? Your tips could be just what I or someone else reading your comment needs to make a brighter day!
- LIVING WITH RELAPSING MS
- side effects
Getting Ready for Treatment
By Chad, Husband, Father, Software Engineer, May 4, 2017
When I was considering LEMTRADA, I found there were quite a few things I needed to plan for—so I got right on it!
A Day in the Life of a LEMTRADA patient—me!
By Chad, Husband, Father, Software Engineer, March 21, 2017
By this point you probably know LEMTRADA is given as an infusion intravenously. But what’s it like? Does it hurt?
Attend a live event or watch one online to learn more about LEMTRADA.
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