Caregiver Perspective: Understanding Immunosuppression
My husband, Lynn, began taking Ocrevus, to treat his primary-progressive multiple sclerosis (PPMS) in March. As his caregiver, one of my responsibilities is to become familiar with his medications and associated risks. While Ocrevus holds great promise for individuals who have PPMS, the impact of having continuous autoimmunity as a consideration in living his life is significant as well.
How Ocrevus works
If you are unfamiliar with Ocrevus, you're probably not alone; it's relatively new. Individuals taking Ocrevus receive it every six months by infusion. It works by breaking down the B-cells in the immune system. The B and T cells work together to create antibodies to fight off invasions of bad guys trying to attack the “host’s” body. With MS, the B/T cell team doesn’t work correctly. Instead of just attacking the bad guys, they perceive their host’s body as being invaded by the enemy and attack.
The immune system goes on attack
That's where the term "autoimmune" comes from – "auto," meaning "self" or “attacking self” in this case. The immune system, after that, goes on the attack against what it perceives to be both internal and external enemies. Usually, Ocrevus reduces the number of B cells available at their greatest number by the 14th day after receiving the infusion, and the individual then is without the protection of the B cells until the body can reproduce them again. Reproduction takes about six months, which is why Ocrevus is given on a six-month schedule to keep reproduction levels under control.
Ocrevus shuts down the “B” cells
Ocrevus works by shutting down the “B” cells to prevent them from being able to fight. So, going with my example above, Ocrevus goes into the hideout of the B/T cell hang out, and neutralizes all the B cells. They no longer can function. It takes away their ability to move and react; most of them die or can’t function at all.
Unfortunately, the flaw in this plan is that when the foreign enemy attacks, they slip right in the front door Ocrevus left standing wide open unless the T-cells are awake enough to stop them. Therefore, the individual has some immunity, but it is severely compromised – that’s where the term “immunocompromised” comes into play. Individuals taking Ocrevus to prevent B cells from attacking their myelin become immunocompromised. While those "B cell double agents" no longer are available to attack their host's body, they also no longer protect against foreign agents either. The clubhouse is open for invasion.
The impact of being immunocompromised
Okay, so what exactly does that big word “immunocompromised” mean in everyday English? What's the real impact? It's pretty significant and rather frustrating because it's not something currently associated as a risk factor for persons who have MS. Most healthcare providers know MS patients have an autoimmune component to their condition. However, if you mention to them that you are immunocompromised, they are going to think that you are getting autoimmune mixed up with immunocompromise. They may ignore you unless you take information to show them what you mean. My husband was a patient this past week, and almost no precautions, except a private room which I had to request, were taken based on his being immunocompromised.
Reducing risks if you're immunocompromised
The following are some of my observations regarding risk factors if you are immunocompromised and suggestions for reducing your risks in healthcare facilities.
- Ask that your medical record be visibly labeled prominently as immunocompromised. You want any healthcare worker coming into contact with you to be aware that you are at increased risk for acquiring infections. Therefore, if they have an active infection or may be contagious from exposure, they will be forewarned and take appropriate precautions.
- Ask for an “immunocompromised” label to put on your armband and a sign for your door. If the hospital doesn't have one available, see if they will make one. They can write the word on a plain armband or piece of paper and use that for you. Explain that you want those from other departments who may not see your chart to know you are at risk when meeting you face-to-face without access to your chart – same rationale as before.
- If admitted for a possible infection, ask them to obtain a specimen of whatever bodily fluid might be appropriate before starting you on antibiotics. Otherwise, you will receive a heavy hitter broad-spectrum antibiotic that’s designed to kill everything in its path to treat your potential infection. While that sounds good, it’s not. Long term, if you use the broad-spectrum antibiotics too often, the germs you are fighting build up a resistance to the antibiotic and can make the use of the drug unavailable for the future. That's how "superbugs" occur. They become “antibiotic resistant.” That spells trouble. No longer can the top gun drug be used to treat the potentially life-threatening infection because the drug was used too many times to treat “just in case of” situations when it was not needed as often. Therefore, try to convince them always to use the organism-specific antibiotic first, and save the big guns for the major battles.
- Ask for a mask to wear when traveling through patient care areas, including while sitting in waiting rooms.
- Request a private room.
- Carry hand sanitizer with you everywhere and use it.
- Never eat at a buffet. Anywhere. (Visualize a spray of germs coming from an open mouth or nose traveling a distance of 3-5 feet from the said mouth over the entire salad area while at the same time someone is picking up pieces of food dropped from their plate and returning it to the bowls with their fingers that just picked their runny nose. Need any other reason?)
- Explain to everyone that they are contagious at least twenty-four hours before symptoms appear and several days after symptoms go away. If exposed to anyone with an infectious disease spread by coughing, sneezing, diarrhea, vomiting, touching, stay away. Also stay away if they have a fever, chills, body aches, etc., for at least 48 hours after symptoms are no longer present. Ask your coworkers to do the same.
Resistance to infection must be taken seriously
Unfortunately, when you are immunocompromised, you must remain diligent always. Limit your time in public areas. Don’t go out shopping or to public areas during flu or cold season. Tell family and friends to visit using video chats methods if they have been sick.
Your resistance to infection is real and must be taken seriously. Take reasonable precautions at all times while you remain on Ocrevus. The medication has excellent potential to make the lives of MS family members better, but we must respect the potential side effects as well.
Have you experienced any of these vision symptoms? (select all that apply)