Too Much Immune System for Me: Immunosuppressants and CF

Sometimes, I introspectively peak at my mangled innards and wonder how this all came to be? You manage one chronic illness your whole life? Sure, no problem. You get used to it and find a sustainable rhythm.

Add on a dash of diabetes to the already established chronic illness? Er, OK . . . things are a little rocky and discouraging at first, but again you rise to the occasion and eventually figure it out.

Finally, when your mysterious chronic pain hits its peak, you add another set of initials to your rap sheet– cystic fibrosis (CF), CF-related diabetes (CFRD), and now, rheumatoid arthritis (RA).

Can you manage it all? A rare genetic disease, a complication of that rare disease, and an autoimmune disease likely spurred on from that original disease.. and here we are. My life in a nutshell.

Chronic illness management overload

Managing three separate diseases, each with their own set of rules and precarious treatments is overwhelming some days. There's an additional layer of complexity when you think about the relationship between the diseases. You can’t treat one illness without wondering how the others will react. For example, the goal of RA treatment is to quiet the immune system, but by doing so I put myself at risk of serious infections from CF. It’s as if my life is the Catch-22 of chronic illness– no right answer, many conflicting factors, and a whole lot of trial and error.

What does it mean to be immunocompromised?

RA is an autoimmune disorder where my immune system mistakes healthy joints as a foreign threat, therefore attacking them causing swelling, inflammation, and pain. It is common in RA treatment to suppress the immune system in order to lessen the attacks on the healthy joints. Unfortunately, when my immune system is suppressed, it’s also harder to fight off bacterial infections or viruses.

As you can imagine with CF, that might pose a problem if you get a cold or virus or experience a CF exacerbation. It increases the risk of those infections turning serious and causing permanent lung damage, hemoptysis, or collapsed lung.

The ultimate goal is finding the right balance of suppressing just enough of my immune system to stop progression of RA while fighting off chronic infections from CF.

Is it safe?

Before I started my injectable immunosuppressant, I contacted both my CF doctor and my pharmacist to discuss and ask questions. I had concerns about how the immunosuppressant would affect my chronic methicillin-resistant Staphylococcus aureus (MRSA) and Pseudomonas aeruginosa infections and put me at risk of complications. They said while there’s not a ton of research and data, there are a few case reports and first hand experiences from their patients that use medications like this. One research hypothesis they shared was that TNF-inhibitors, like the one I was prescribed, could help lessen inflammation in the lungs. They agreed to the treatment and hoped would prove to be a positive step for my lung health and treat my chronic pain as well.

Lessons learned

Boy, oh boy, were we wrong! In the 4 month period I was on the injectable immunosuppressant, I was constantly sick from viruses that would then turn into a secondary infection like pneumonia or tonsillitis. Just as I was getting better, I would get sick again.

It was a terrible cycle of sickness, pain, and inflammation. My blood work also showed high levels of inflammation and high white blood cell count hinting that the medication wasn't working well. In the end, that specific immunosuppressant was not the right medication for me at this time and I agreed to stop.

Good news, there are other options to try to help me become pain free. I know the right combo is out there, I just have to be patient and continue caring for the body housing these diseases.

Have you ever tried a medication that you had reservations about? How did it turn out? Share your experiences below.