A lot of people have been asking me, do you feel any better since starting the drug?
Because my asthma is so severe it’s really hard to tell which, if any, of the medications I’m currently taking ( including daily prednisone and semi daily azithromycin, and now 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 a mixture of both YES and No with the scale balancing just right of the center line.
I don’t actually “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 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 at the moment, I would use the word “stable”. Like I said, 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, I feel much less anxious about the next potentially deadly flare lurking 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 you’re 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 consistently 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 of the more severe exacerbations.
As with all of these new asthma biologics, Dupilumab is not a cure-all or a replacement for one’s current asthma medications, but rather an add-on therapy, which might help reduce that amount of steroids required, so being realistic about expectations is important as well. Only time will tell if this medication will work on someone like me, but I am, as they say, cautiously optimistic. Honestly, even the tiniest of improvements would make a huge difference in my quality of life.
Thanks for the update!
Been waiting anxiously to hear whether the biologic was gonna do any good for you. So glad it is!
I’m excited (admittedly, a little selfishly) about what this means going forward for other asthmatics like me.
Hope this is the proverbial Christmas Miracle for you!
So kind of you to follow up Liz. So far, the improvements , if any, have been subtle. On one hand I don’t really feel any better, but Ive also not required a hospitalization in over 2 months now. Whether that has anything to do with the drug, I dont know, but I remain optimistic.
I have read about stem cell therapy for mild COPD. Have u heard it being used yet for asthma?
Hello and thanks for writing. I think we’re still many years away from stem cell treatment for asthma.
new to this post, thanks for your honesty and great info in your blogs.
have you tried thermoplasty or looked into it?
they do it at uc davis in sacramento.
Hi and thanks for writing.
Actually, Im not a candidate for BT, as my baseline FEV1 is too low. The procedure would probably kill me. However, I know of other people who have greatly benefited from it, some more than others.