Fasenra, 5 months in

Today’s injection marks the start of my 5th month on Benralizumab, also known as Fasenra. So far, I seem to be tolerating it ok, meaning that other than the usual injection day fatigue, headache and mild muscle aches, Ive experienced no weird or lingering side effects like I have with other biologic drugs. But is the drug actually helping?

You would think that it would be easy to determine whether a medication that is designed to improve your breathing is working or not. Either you’re breathing better and have less symptoms, or you’re not, right? Wish it were that easy. The thing is, when you’ve suffered from a chronic lung disease for decades where the severity of your symptoms varies from day to day, it’s only the more acute or obvious changes that are going to stand out, the more subtle improvements might not be so apparent. Add to that multiple health conditions with lots of different medications in play, and it can be very difficult to attribute a particular effect, good or bad, with a particular drug.

In an attempt to be as objective as I can in my self-assessment of how I’ve been doing on this drug, I’ve been keeping a log of my daily symptoms, peak flow measurements and other noteworthy observations. Here are some of the more notable events that have occurred since starting the drug:

• 7 days after I received the first injection of the drug, I had some mild worsening of symptoms, mostly in the form of chest tightness and increased shortness of breath. It was probably just coincidence or maybe my body was reacting to a foreign substance being injected into it. But it had me a little on edge because I didn’t know what had brought the flare on. The thought that “oh great, my asthma isn’t going to improve even on this new medication or it’s actually making it worse?”, probably added to my stress.

  As I’ve done in the past when my symptoms ramp up, I decided to apply my 3-day rule of holding off on starting or increasing my oral steroid dose for 72 hours to see if the flare would resolve on its own. (Btw I only hold off on the prednisone if my peak flows are normal or only slightly off, which to me indicates that my symptoms are probably attributable to air- trapping.) Thankfully, it did. After two days of crappy breathing, I started to feel better and didn’t need to re-start the pred. That would have sucked after being steroid free for more than a month.

• At week 3 I experienced yet another mild to moderate flare up. Once again applying my 3-day rule. As before, it was a close call, but my symptoms improved after just 48 hours.
• At the 2 and a half months mark I experienced yet another flare, but this one did not improve, even after the usual course of oral prednisone. I eventually ended up in the hospital and was there for 11 days. I spent 5 of those day on a ventilator. I had hell of a time getting over the hump. All medications aside, it took me 2 full months and 2 repeat bursts of oral steroids before I started feeling like my old self again.
• Month 4 I seemed to have turned some kind of corner. No hospitalizations, no acute flare ups and no prednisone for 6 full weeks. I still have frequent bouts of breathlessness and difficulty sleeping, but my peak flows and O2 sats have remained stable.

Taking all of this into account, it would appear that out of the 5 months that I’ve been on the drug, the first 4 months weren’t so great. During that period, I experienced some of the worst exacerbations I’ve had in a long time.

So, does it mean that the Fasenra isn’t working or hasn’t helped? One thing I can say for certain is that I’ve been able to stay off oral prednisone now for more than 6 weeks. Was it the Fasenra that helped make that happen? Again, I don’t know for sure because Ive been able to wean off pred for short intervals in the past without Fasenra.

In all fairness, it would be unrealistic for me to expect that ANY drug would dramatically change the trajectory of my disease. The fact is I have extremely complex and severe asthma. And while have I do have elevated eosinophils; my levels aren’t as high as those who reportedly benefit the most from drugs like this. I also have a secondary condition called Bronchiolitis Obliterans, which tends to make my asthma that much more difficult to treat or control. And far as I know, there has yet to be a drug created that can reverse the lung damage that I already have. It would be interesting to see if my Pulmonary lung function numbers (Spirometry) have changed since starting this drug.

In summary, 5 months in Id like to think that the Fasenra is helping, but honestly Im just not sure. It definitely hasn’t been a life changing drug for me, but it does seem to have helped smooth out some of the wild swings of intensity I often experience with of my symptoms. I would rate my chronic breathlessness, which is a huge burden for me, as unchanged. I’m still as short of breath on exertion now, as I was before starting on the drug. On the other hand, I haven’t had a major flare up in over 2 months and haven’t been going through as many Albuterol inhalers. Asthma symptoms can very cyclic in nature. Are these improvements because Im going through a good phase with my asthma right now, or is the Fasenra? I just don’t know. I think more time on the drug is needed to make that determination.

Till then I’ll take anything I perceive as an improvement, no matter how small, as a win. Let’s see what months 6 and 7 bring. If no provable change I can always move on to the next drug, Tezspire, which will hopefully be more available by then.