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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.

Immunosuppressive therapies

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.

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.

Comments

  • SophiaChang
    10 months ago

    I can’t tell how paranoid I should be – I keep looking up NIH articles on Rituximab, the chemo I’m on. I have antiMOG, that new disease that was just decided last year to be separate from MS but very similar to MS and NMO.

    There isn’t much in terms of literature on antiMOG to begin with, and nothing on Rituxan for my disease, but my neurologist’s office says 6 weeks of immunosuppression for me.

    Just today I had a friend coming over to help me (I’m walker/wheelchair-bound and very fatigued) and I had to ask her not to come. She has what might be severe allergies or a long-time sinus infection. Until I know for sure, I can’t risk it.

    It definitely keeps me isolated and exacerbates the depression that the disease/meds already perpetuates. But I also know being sick would be 10x worse.

  • Matt Allen G author
    9 months ago

    I’m never sure either, my neurologist will laugh and say I shouldn’t worry about it so I don’t but then I get terribly sick to the point that I have to go to the ER so then I’m back to being paranoid. I have just bought. a bunch of medical masks Four times that I need to go somewhere that I know is a huge risk factor, tons of hand sanitizer, and I am constantly aware of what I am touching and who else may have touched it. I always wash my hands and I just try to be smart about sanitation as I can.

  • SophiaChang
    2 months ago

    Hope this reply still gets to you 7 months later, Matt! (I wonder if there are notifications I can turn on.)

    I immediately bought masks the second I went on chemo and I keep hand sanitizer spray in my bag. I was always a germaphobe, but now I’m fastidious about sanitizing my hands before I eat, or after I touch shopping carts and door handles. If someone is sneezing or coughing in the same room as me, I wear the mask. It’s super uncomfortable to sit through a movie with a mask on but after hearing about your ER experience I absolutely will keep doing it.

    My neuro also says not to worry – he has a patient who even works as a cashier at Trader Joe’s – insane! I would not be able to touch this many strangers a day lol.

    Anyone who enters my home has to wash their hands immediately and if they’re sick they’re simply not allowed to come over. I also chlorox wipe down the door handles and seatbuckles in my friends’ cars anytime they drive me around. Ah life with immunosuppression!

  • DonnaFA moderator
    2 months ago

    Hi Sophia! To change your notification settings, click on your picture in the upper right hand corner. When your profile page opens look at the ribbon under your picture and the second from the right is a gear icon. Touch the gear and you will see “Notification Settings”. Click on that and you will be able to set your notifications to send emails in several areas.

    I hope that helps! -Warmly, Donna (MultipleSclerosis.net team)

  • itasara
    1 year ago

    I have never had a flu shot. I have been on Copaxone for 12+years. I was never one to get a lot of illnesses. I did have the usual childhood diseases which had no vaccines at the time. I had an occasional cold or sore throat or mild viral flu growing up, but nothing traumatic (except maybe mono which I contracted in college.)
    I didn’t have hardly any colds in the past 12 years that I have been on DMT until 4 years ago. I had a sinus cold and when it ended I had no sense of taste or smell. 3 years later the senses returned, thank goodness. I had another short cold last year and a cold this year and a long drawn out respiratory chest illness that I’m getting over now. I did not lose my sense of smell or taste again.
    I hope I don’t need to come off Copaxone and go on anything else. I went on it because if has far less if any side effects compared to the others and no monitoring of liver complications. After the last MRI in April, 2018 (first one since 2007) I have no active lesions which was the case before but maybe some more lesions with more scarring and now brain shrinkage. So now I have an appt with an MS specialist in May.
    I would like to come off meds all together, but am worried she might want me to go on something else. I read this article about coming off DMT altogether after age 60 or so and I am no 70. ( https://tinyurl.com/yb8pwot2 ) I am afraid these other meds could compromise my immune status and then I’d have to worry about getting infections.

  • Matt Allen G author
    1 year ago

    I think that is a hard decision to make, one that you will have to make with your doctor, because Copaxone is definitely the least likely to cause any sort of side effects compared to everything else and also is probably the one medication that doesn’t hit your immune system that hard.

  • jackie5275
    1 year ago

    I’ve been on Rebif pretty much the whole time I’ve had MS, except for a short stint on Aubagio, which is another story. Anyway, I pretty much don’t get sick either on Rebif. No more seasonal sinus infections. One thing I do religiously though is get a flu shot every year. I really think it makes a difference.

  • Matt Allen G author
    1 year ago

    I was on Rebif for a while. Pretty much all MS medications either suppress or modify the immune system in some way, so it’s always best to avoid getting sick when on these meds

  • potter
    1 year ago

    I am on Tecfidera, I seem to get anything that is being passed around and then I have it twice as long and a low worst. I just had a relapse that I was recovering from right before Christmas, I had a scheduled appointment with my GP. I called and asked if I should come in, I thought they would have a lot of flu patients. They told me they didn’t I would be fine, two days later I had the stomach flu. Totally wiped me out for two weeks, my husband caught it from me and he recovered in less than a week. The last cold I had I developed a ear and eye infection with it. The year before that my cold turned into pneumonia. Your not being paranoid just practical. I try to grocery shop when there are very few shoppers and I wipe down the cart with Purell. When I hear someone coughing I head the other direction. I pretty much become a hermit during flu season. Thank you for the suggestion on the tape for your mask, I had pretty much given up on them because of the fogging problem. Potter

  • Matt Allen G author
    1 year ago

    The thing about the doctor’s office, yeah, when a nurse or someone on the staff is sick they are not SUPPOSED to go in to work but chances are they will say, “naw, I’m not sick, I’m fine” because how realistic is it for everyone to be able to call off work whenever they get the sniffles? So I am just as worried as getting sick from the staff as the patients. Either way, I just try to never touch anything that I know other people have; the pen to sign in (I bring my own), the ATM, buttons on the card reader at the store, grocery cart, rails, door knobs, etc

  • Debrahoff2
    1 year ago

    I hate the anxiety I live with about getting sick! I do the same things, wash hands, carry sanitizer, but since my Ocrizulaub infusion a few weeks ago, it’s like I’m waiting for the ball to drop. I just got over a cold but worried what will be next? Especially during this crazy flu season. Not sure how to stop worrying. Wish I did. Having young children doesn’t help because of all the germs and viruses that come from schools, but I try to hope that because my immune system is, or WAS over active, maybe the change caused by the infusion isn’t as bad as I think is.

  • Matt Allen G author
    1 year ago

    I have just slowly been pushing myself to go out more and more knowing that all the precautions I take will probably protect me from getting sick. I mean the only other thing I can do is become a hermit and never leave the house but then MS has won so… Just got to try to be smart about everything…

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