After months of trying to get it approved, I finally received my first Xolair injection! When I got the call from my doctor yesterday saying they received it from the specialty pharmacy, it seriously made my day (especially since I had just finished the WORST blood work experience ever...).
It is technically still in the process of being officially approved, but they sent out a trial injection to start with while the rest of the paperwork is finished. My doctor called yesterday about 10:30 am, and they had an opening mid-day so I was able to go right then. That's a good way to start out a week =)
Xolair is an immunotherapy/antibody injection. No one is really sure why or how it works in mast cell patients yet, they just know that in many people, it does. Both Dr. Afrin and my local allergist felt that Xolair would be a very good option, and so we've been in the process of trying to get it approved since about November.
Since the mechanisms are not really understood yet, there is a lot that is unknown about Xolair still. One thing that is known is that there is a real risk for anaphylaxis from the injection. That meant that after I got it yesterday, I got to spend a few hours hanging out at my doctor's office so they could monitor me for symptoms.
I am happy to report NO ANAPHYLAXIS to the Xolair =) =) Yay! About 30 minutes before I was going to be allowed to leave, though, Leni got up from her deep sleep and came over to paw me. I immediately checked my blood sugar which was okay, so it was possible she was alerting to an oncoming mast cell reaction. I let the nurse know and asked if I could treat with my emergency medications. They agreed, so I was able to treat the possible reaction Leni alerted to.
About 20 minutes later, I started getting nauseas and itching on my arms where I got the injections. They kept me about 30 minutes after I was supposed to be able to leave to make sure my symptoms were not going to progress anymore. Thankfully they did not, probably due to Leni allowing me to start treating early so we could keep the reaction to a minimum. My doctor was pretty impressed and called Leni a "cool early warning system." What a good girl!
I've been feeling a bit "flu-ish" since the injections which are very normal side effects. My doctor said if I felt completely normal, THAT would be unusual. I've got some body aches, a slight fever, still a bit nauseas and itchy, and a bit of a headache, but that is all to be expected. There is still a small risk of anaphylaxis up to 48 hours post-injection, but so far I have no indication that things are moving that direction, we are just monitoring things for the next few days.
Once I get past the couple days of flu-like symptoms, we will be able to see how Xolair will impact my symptoms. It can sometimes take 2-3 injections to see an improvement, but many mast cell patients also see a benefit after the first, so we will see how I feel later this week. Assuming all goes well with my insurance (which is not really something to assume, but oh well...), I will get another injection in a month. Xolair has a half-life of 26 days which means after 26 days, there will be about half of the antibodies left in my body. At that point, the next injection will increase the amount of antibody in my system again to continue binding to the IgE receptors on my mast cells to help down regulate them (aka calm them down) so they are less sensitive to various triggers.
As with any treatments, there are always side-effects or things to consider. With Xolair, because it is an immotherapy treatment and binds to IgE receptors, in addition to calming mast cell activity, it also can suppress the immune system. Nick and I are already careful about me being exposed to infections and illnesses, but my doctor warned that we need to be even more vigilante. I am already considered "higher risk" if I do get "normal person" sick because my body reacts so oddly. Now I am also going to be a bit more susceptible to "normal people" infections which is not a great combination, but one we'll deal with. So if you see me wearing a mask anywhere, that's why!
Yesterday was special, not just because I started Xolair. This may not be the answer for me. Nick and I are well aware of that. But that doesn't mean that we can't stop and just enjoy some time in hope instead of discouragement and frustration. In the midst of a season of feeling worn down, exhausted, and spent, this was our rainbow yesterday. It was a reminder that even when there is no end in sight and we have no idea where we're going, God is still with us and sees what we don't. This was just a dove being sent out of the ark after a season of flooding. This dove may come back, but that doesn't mean there still isn't hope. We'll just have to wait a bit and send out another. Or maybe, this is the dove that won't come back.
I can't say this enough, but THANK YOU for your prayers. I am so humbled hearing that I am constantly being lifted up to God in prayer. Words truly do not express the emotion and gratitude that I feel toward everyone who has come alongside Nick and me during this season of life. It is still a weird place to be and at times difficult to be in a position of desperately needing so much prayer just to make it day to day. At the same time, I cannot wait to also share the joy and victory and healing that will come and is coming. A burden shared is halved, and a joy shared is doubled. THANK YOU for sharing in our struggles and eagerly waiting to also share in our rejoicing.