I was diagnosed with late-onset Pompe disease when I was a young girl, and I’ve been on Lumizyme® for more than 6 years. But I started the treatment late for personal reasons. At the beginning of starting treatment, I did feel a difference, and it felt like an energy boost, but years have gone by and I don’t feel that energy boost anymore. I don’t feel anything after my infusions anymore except tired from the meds.
As a result, I am in the process of trying to switch over to a newer drug, Nexviazyme®. I first heard about this treatment from my case manager, but I knew of the new drug from the Muscular Dystrophy Association magazine that I’m subscribed to. And since I associate with Pompe on my social media, I learn more about new treatments all the time. Social media is my best source of information regarding anything about Pompe disease.
Read about experimental therapies for Pompe
The reason I’m deciding to switch is that my nurse who does my home infusions mentioned that another patient with Pompe is on Nexviazyme and that the infusion is only 4 hours, whereas my prior treatment regimen was literally all day. Of course, I would love a faster infusion, but that’s not what caught my attention and made me decide to change. It was when I went to my Pompe support group and asked those who were on Nexviazyme about the difference. I was surprised to learn that so many have switched over and spoken favorably about the results.
I had to question myself on why am I so late with starting this new drug that came about last year. So I was a little surprised to learn that it passed trials and is doing very well before I learned about it.
When you decide that you want to get on board with a new drug that’s used to treat your disease, there are a few things you have to do in the process of getting it. I thought my primary doctor would be the first I would start with but I have come to realize that my primary doctor might be my least important doctor when dealing with Pompe care. And my most important doctor is my genetics doctor.
My entire care team currently consists of doctors I just met this year, and I can honestly say that I’m very grateful for the work that they put in for me because I’m used to having doctors that can be a bit behind. Thus, having a care team that is on top of its game is something I appreciate. Where I’m at with the process of changing medicine is waiting for my insurance to approve the new drug that I’m trying to switch to. Then once it’s approved I will most likely start my first infusion in the hospital just because it’s new to my body, and we have to make sure I don’t have any complications with the medication or new side effects.
New drug trials are usually posted on websites and shared through social media. Doctors are not always up to par with new drugs and trials, but they can sometimes be the ones to mention them to their patients. My genetics doctor does know of the latest drug that I’m switching to when I mentioned it, which is making the process much easier and faster, but I am a new patient of his, so I wouldn’t expect him to mention it on our very first appointment of meeting each other. I would like to point out that patients have to do their research on new treatments because it’s a really big decision that is theirs to make.