Wednesday, May 4, 2016

Xolair...Love or Hate...

So I know you've read a few of my posts talking about how Xolair has been helping my symptoms. And it still is! At least we hope...

Despite the fact that Xolair has been making great improvements in my overall health, I still dread injection day. And the next day...and potentially the next day...still not sure about that yet.

First round of Xolair we didn't know what to expect, just that I probably wouldn't feel good. Guess what? We were right...

BUT, if you remember reading my first Xolair Update, then you'll remember that after about 3 days of flu-like symptoms and really feeling rough, I started feeling better than I had in a long time. We were excited to see that we had potentially found a treatment that might really make a difference for me.

About a week before the second round of injections, it seemed that I was having a reappearance of my symptoms. We had 2 ER trips in less than a week, including full lights and sirens ambulance rides, one from home and one from work. Somehow once things start improving, it feels like an even farther fall down when I'm not feeling well. Good that my baseline is getting better, but it makes the rough days feel even worse.

Second round of Xolair was scheduled with the hopes that with each round of injections, the side effects would become less and less while the stabilizing effects on my mast cells would continue to manage my symptoms.

Day 2 post-second round of Xolair injections I actually had some hope that the side effects were not going to be as bad. Then the immunosuppressive part of Xolair began to rear its ugly head...the norovirus happened to be going around northeast Ohio right about the same time that I got this second round of injections...let's just say that Xolair side effects + norovirus + mast cell disease = the famous line from The Incredibles...not happy, Bob, not happy...

Two weeks later, I finally felt like some semblance of whatever this crazy life that Nick and I call normal was finally beginning to emerge again. So, I lost 2 weeks of Xolair Month 2, but was able to enjoy the next couple of weeks and feel the benefits of the injections again. I got to spend one of those weeks in Virginia with my family, and it was such a gift to be able to feel relatively healthy to spend time with them.

We made the decision to delay Xolair injection #3 because I had a GI procedure scheduled for the Tuesday after we got back. We felt (and my doctor agreed) that it would be better not to mix the issues that I have with anesthesia along with the side effects of the injections. Did we make the right choice?? Guess we'll never know...

Thankfully I came through the tube change and endoscopy with little to no issues! Best experience so far dealing with anesthesia. Unfortunately, by Friday the coughing that had started the week before (while still in VA) apparently turned into bronchitis. That along with my normal GI issues that sometimes like to surface at the most inopportune times set the stage nicely for a wonderfully convenient ER trip (insert sarcasm here) that at least allowed us to visit our favorite local ER (yes, we do have favorites =P) at a time we hadn't been we can check off mid-morning Sunday off our not-yet-been-to-the-ER-at-this-time-yet list.

I saw my doctor on Monday (great opportunity for post-ER follow-up) for the next Xolair injections, and he agreed to go ahead with round 3 even despite the prior week of non-typical-for-me symptoms. Fast forward about 30 minutes post-injections and I was feeling the normal post-Xolair malaise that I have come to expect as normal.

Yesterday morning I felt about how I expected. I fought off a more severe reaction all day (thank you, Leni, for alerting and keeping me one step ahead of the reactions!) and was very thankful to be able to crash in bed after work with my two favorite black fluffs to keep me company.

Last night was marked by little sleep and me re-learning the intricate patterns on the tile in our bathroom (cause I didn't know them well enough by now...). Today has been more of the same...Leni, Bonk, and I are having a camp-in while enjoying the nice Ohio weather through the windows in the bedroom with brief interludes in the bathroom.

The hopes that Xolair side effects become less with each round of injections have been pushed back another month...stay tuned...

So the question that I posed in the I love or hate these Xolair injections?



  1. So what ever happened with xolair? Just had my shot last week. Not so good.

    1. I'm still on it over 2 years later! We changed the schedule so I get a half dose every other week which has helped make the side effects more manageable, but I still get flu-like symptoms after each injection. I've had other more severe reactions within the 48 hour post-injection window that seem to be connected, but it's a bit of a gray area. I do get a huge benefit from it, though, so I've stayed on it even with the side effects. I hope it ends up being helpful for you, too!