Avoiding Getting Sick: Immunocompromised with Multiple Sclerosis
I did it! I managed to make it through December without getting sick! Growing up I always got the flu around the holidays, always. Around the time that I was diagnosed with Multiple Sclerosis (MS) however, I seemed to stop getting sick even when everyone else around me did. For a while this made me feel somewhat invulnerable; sure, my immune system was attacking my central nervous system (CNS), but at least I wasn’t getting the flu anymore! Silver linings, right? I imagined that because my immune system seemed to be way overactive that any time a virus crossed my path it died immediately because my immune system was already in fight mode. I am sure that isn’t exactly what was going on but like I said, that is how I felt.
But then in 2015 after the disease modifying therapy (DMT) I had been on for about 2 years stopped working I had to “upgrade” to something a little more heavy duty. No longer would I be using immunomodulatory therapies (drugs that modify how the immune system works) to manage my MS but instead I would be using more immunosuppressive therapies (drugs that weaken the immune system).
My immune system tanked
Lemtrada (Alemtuzumab) had just been FDA approved at the time and my doctor and I decided that it was my best option. This drug is administered via IV for 5 days in a row the first year and then that is it until one year later when it is administered again for 3 days in a row. I know some people will do it another year after that (depending on how they respond), but for me that was it, my last dose was in 2016. This drug basically (I mean BASICALLY) causes your immune system to just tank at first but then it gradually rebuilds itself. I know I had been told that it would hopefully “reprogram” itself to not always try to attack my CNS but don’t quote me on that because I honestly don’t understand the mechanism of action well enough to try to explain to anyone how it really works, nor is that the point of this post. All you need to know about this treatment for the sake of this post is that at first I was super immunosuppressed and now I am minorly(?) immunosuppressed. Things are just different. Gone are the days where I can walk through a hospital (consumed by a viral outbreak) while feeling untouchable.
Being the test subject
When I was in the early stages of my treatment I pretty much just stayed home. Not only did I not feel great (side effects) but I had developed a minor anxiety of catching some kind of bug because everyone at the clinic I was going to at the time of my treatment had pretty much scared me into thinking that there were tiny germs everywhere that all wanted to kill me. I was told that I was the first person north of San Diego (in California) to receive this treatment so I was the “test subject” for their new protocol on treating people with this medication and no one knew what to expect; throughout my infusions I constantly had all these “higher up” people coming in to check on me so that was a little… weird.
Habits to stay healthy
So I adopted all sorts of new habits to avoid getting sick. First of all, washing my hands became a more-than-regular thing and I’m not just talking about a regular hand washing, no, I felt like I was a surgeon prepping for surgery! I am sure even Howard Hughes would tell me, “OK dude, I think they’re clean”. Hand sanitizer became a regular part of my life: I always (and still do) have it on me as well as around me (like at my desk). Medical masks? Yep! At first I would put one on whenever I left the house, but now I only wear one when I (for example) am visiting a hospital or going anywhere that I know there are sick people.
Quick tip on medical masks: do you wear glasses? If you do, I am sure you have dealt with your glasses fogging up every time you exhale while wearing a mask. Frustrating, right? Well, all you have to do is put a small piece of tape across your nose (so the mask is taped down under your glasses) and voilà! No more fog! I use that paper-medical tape stuff they use when placing an IV, not the plastic kind.
Over the top vigilant
Anyway, I also always made sure everything around me was clean and disinfected including anything that people regularly touch like doorknobs, remote controls, the refrigerator handle, the microwave handle/buttons, lamp switches, etc. I am not as crazy about it now but I still do try to go around and disinfect everything now and then. A lot of the little things I did and still do might seem a little over-the-top and crazy but hey, I didn’t get sick. Well, not at first.
A little cold hit me like the worst flu
Last year, I woke up feeling a little odd, and within a couple days I had a fever, I was vomiting, I had really bad body aches, really bad chills, and all the other little things people get when they are sick. After receiving Lemtrada, I was told that if I ever got a fever of 100 or higher that I had to go to urgent care immediately. Well, I hit 101 so I reluctantly went to Urgent care where they immediately got me a room (I was given a kind of business card explaining that I am immunosuppressed because of Lemtrada, so I can’t sit in a waiting room full of sick people) and started doing labs. Turns out I didn’t have the flu like I thought but actually just had a cold! A little cold hit me like the worst flu I ever had! They gave me IV fluid because I was dehydrated and sent me home. In my mind this only vindicated my paranoia of getting sick, and a year later, when everyone in the house caught a minor cold, I caught it too despite the fact that my most recent labs showed that all my numbers were back to what they were before my treatment. This time it did not hit me as hard as the last but it was still pretty terrible.
How I avoided flu season
So call me crazy but I have made a lot of these little tactics (like always using hand sanitizer and avoiding sick people like they have the plague) second nature and guess what? When everyone else around me got sick this flu season? I managed to avoid it so I don’t see myself ever really dropping these habits especially because I don’t even have to think about them anymore (second nature). Getting sick while immunosuppressed is not fun especially when you have MS which is often exacerbated by things like a cold or flu virus.
Have you experienced any of these vision symptoms? (select all that apply)