My first 7 weeks on Dupilumab

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A lot of people have been asking me, do you feel any better since starting the drug?
To be honest Ive been a little hesitant to post an update so soon after starting on the drug for fear of jinxing myself, so I’m only commenting on how I feel as of this writing.

Because my asthma is so severe it’s really hard to tell which, if any, of the medications I’m currently taking (which includes daily prednisone and semi daily azithromycin, and of of course Dupilumab) is having an impact on my breathing, or if I’m just experiencing the normal ebb and flow of symptoms that most people with asthma have. But, if I had to answer that question today, Id have to say yes and no with the balance point just to the right of the center line. I don’t really “feel” any different, ie…Im still short of breath much of the time, but mentally I do feel better. Still, there must be some kind of physical change going on as well because the numbers don’t lie. After just 4 weeks on Dupilumab my FEV shot up to 1.1 liters (39% of predicted). While that’s still not great, it represents an incredible 80%+ improvement from before I took the 1st dose, which was .65 liters or 25% of predicted. Interestingly, my symptoms actually got worse immediately following the first and second doses and I even had to increase my prednisone dose twice to get over the hump. But again, the numbers don’t lie and those short lived flares early on were probably coincidental.

If I had to characterize how I’m currently feeling, I would say that I seem to be more stable. I don’t feel a ton better, but I don’t feel like I’m careening down the proverbial asthma cliff either, like I was just a few months ago. And while my symptoms haven’t really improved that much, I feel much less anxious about that the possibility that next potentially deadly exacerbation is lurking just around the corner. It could also be that mentally I don’t want this drug to fail, so perhaps I just “think” Im more stable. Who knows. Again, it’s too early to tell.

Now it’s important to note that FEV1, or for that matter pulmonary function numbers in general, don’t really correlate well with symptom severity. You can have an FEV1 of 100% and still “feel” like crap. Conversely, you can have really low numbers and not really feel a significant difference unless they were exerting yourself or are actively flaring. So while it’s great to see to my FEV1 rise, a better indicator of improvement would be to see those numbers remain there or go even higher.

Im sure it will take more several months for a definitive answer, but ultimately the proof in the pudding will be when Im able to experience a reduction in the flare ups that require hospitalization and/or a decrease in the amount of steroids I have to take. If and when I attain any of those benchmarks, I’ll know for sure that the medication is helping and making a significant difference in my life.

As with all of these new asthma biologics, Dupilumab is not a replacement for one’s current asthma medications, but rather an add-on therapy which might help reduce that amount of steroids required to stay alive. So being realistic about expectations is probably important as well. Only time will tell if this medication will work on someone like me, but I think we’re off to a good start. More updates to follow.

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