Mental Health Side Effects

I was fortunate to not struggle with mental health when I was growing up. It wasn’t until I was an adult that I started to have struggles with anxiety. I know that depression, anxiety, and other mental health diagnoses can pop up as someone gets older. I also know that there are a variety of reasons why this happens. It can be genetic, or predisposed, sometimes it is environmental, and sometimes it is from side effects of medication. My anxiety happened to develop around the same time as new medication.

One of the tradeoffs to having amazing new medications, is being unsure of all the side effects. I agree to take newly researched medications, because I have limited other choices with my current health, and I need to try every option that is given.

CFTR modulators

Orkambi

I’m so thankful for the new modulators that came to market for cystic fibrosis (CF) patients. They are a miracle for many. I started on a modulator called Orkambi in 2016, but this medication was not a good fit for me.  It negatively affected me (meaning my lung function took a dive) and I had to stop the medication.

Symdeko

I really wanted to see the positive changes, as many CF patients saw positive outcomes. For many patients this medication worked wonders, but I was one of the few that did not react well. When Symdeko (the next generation of modulators) came to market, my doctor had me try it, and it was okay. It kept me stable, but I didn’t see it reflected in my lung function or weight.  It also came with a slight increase in symptoms of anxiety.

However, the anxiety was completely manageable and very low. Overall, it was a smart trade, in my opinion. A little anxiety for stability and less hospitalizations. It seemed an easy choice considering my multidrug resistant bacteria in my lungs. I’m currently running out of options for treatments, so I continued to take it.

Trikafta

Then the newest form of modulator came to market, it was called Trikafta. With Trikafta I have seen the biggest difference in my numbers, with my lung function slowly rising ten percent. I gained over 40 pounds in 60 days, which seemed a little intense, but I finally put me at a normal level BMI for the first time in my life. I have been on it for two years and haven’t been hospitalized since, and that itself is a miracle for me. The only downside to Trikafta has been an increase in insomnia and anxiety.

Talk therapy

Between 2020 and 2021, our family had a lot of anxiety in our life (due to outside reasons), so there’s also external influence in that area. Then the pandemic hit, and I knew I needed to find some help to deal with my anxiety. I spoke with my CF doctor and she recommended I find someone to talk to about my worries. So I started seeing a counselor. She is an outlet for me for my fears, worries, and anxieties. My anxiety is more manageable in some ways, now that I have found counseling and I am aware of it. And currently my doctor and I don’t think I’m not at the point where I need medication to help. But that could change in the future.

But, I do believe my mental health struggles with anxiety were directly related to modulators, because I didn’t have these issues in the past. But, I’m the healthiest I have ever been, best weight and highest lung function in over 20 years. I’m thankful and not complaining. I’m glad that I’m aware of these side effects, so my care team and I can keep an eye on them.

Discuss with your CF care team

Each person is different and needs a way out their own pros and cons with their care team. I'm glad I discussed it and can be proactive with mental health.

If you have these issues, I suggest speaking with your care team and letting them know that you’re struggling. It's an important discussion and I'm thankful that I decided to talk about my mental health, and that I'm seeking solutions to my anxiety.