Autoimmune Diaries: Xolair Shot Number One, Wish Me Luck!

Updated Note: Due to a fairly violent allergic reaction early this AM (to goodness knows what) the first shot has been postponed til Monday. Thanks for your good thoughts for that day, now! 

So, dear readers, it is with great trepidation that, because of the autoimmune issues that have plagued me since my teens, and in particular, the ones that have made eating out in a restaurant, going out in the sun, etc…impossible in the last four years, I’m trying out a new biological agent (technically chemo, a monoclonal antibody that suppresses your IgE reactions) called Xolair (real name: Omalizumab). Xolair is a once-monthly shot you get for six months, which helps asthma, allergies, angioedema (tissue swelling,) hives, and possibly even food allergies (it’s in testing for deadly food allergy treatment now). Since I have all those things, if it works, it’ll be lovely. I’m starting with one 150 mg shot, to ramp up to 300 mg in a few months if the results are good.

But the side-effects are scary. It doubles your risk for all cancers (from .02 percent (control) to .04 percent, but still), has a 2 percent risk for anaphylaxis, and a much higher risk for less frightening but still less fun things like headache, joint pain, and reactions at the injection site. A lot of people report feeling flu-like for three days after the shot. Oh, and did I mention the possible hair loss???? Yes, that’s something I’m hoping to dodge.

So it’s not a dream drug by any means. But since, for the last four years, I can’t even touch wheat without having a severe reaction, I’ve been pretty unable to travel due to things like ‘spontaneous idiopathic anaphylaxis’ – not any more fun than it sounds – and I’ve had asthma and allergy problems since I was a teen, it seems like a good risk to take. Some doctors give patients steroids before the shot, but because of my bleeding disorder, which makes steroids complicated, I’ll be going in armed only with Zyrtec and Benadryl, along with my epi-pen and inhaler (required by the doctor, ‘just in case.’)

Will you wish me luck? Another down side is you have to wait several hours in the doctor’s office after the administration, as they make sure you don’t react to it right away (although you can react after your first or second shot, and even more than 24 hours after.) So I’m stacking up books, my Kindle, and my laptop to while away the hours after I get the shot. Since I’ve had reactions even to shots as innocent as b12 shots, I’m (understandably, I hope) a little skittish. I thought seriously about making a will yesterday. (I’m 41, for God’s sake, and not immortal, so I guess it would be a grown-up thing to do anyway.) But still.

You know, one day you’re worried about your poetry book, getting your bangs trimmed, your 89-year-old grandmother’s (very similar to your) allergy problems. The next you’re all, “I hope I don’t die from this experimental chemo drug.” So, hopefully you’ll hear from me again soon, all happy that I took this crazy expensive drug and that it will have immediate positive results like, I can touch wheat again without having anaphylaxis, or I can walk briskly without having an asthma attack, or I can walk out on a summer afternoon without going red with sun-welts. (Note: results usually do not emerge for four-six months of treatment.)

Here is a picture of a grumpy heron at sunset at Juanita Bay in Kirkland, apropos of nothing. Walking around at sunset is so nice here these days…