Looks like my chronic hives can’t be controlled by multiple antihistamines without either Prednisone or Xolair. I went from 1 pill a day to 8, and still the hives continue to appear, and are getting worse with each outbreak. Since pred isn’t a drug you want to be on long-term, my doctor started the process for applying for Xolair again.
Xolair isn’t a drug you can just get a prescription to and go fill at your local pharmacy. It has to be specially prepared by a specialty pharmacy, and it’s extremely expensive. So the first step is to order it, and put in an application/insurance paperwork that should get the monthly payment down to around $300/mo. Then there’s a second aid application that will lower that even more which I also need to apply to. If I’m lucky, I’ll get into the $5 copay program. Since I had to disclose my total household income, I’m a little concerned that I might not qualify. I’m not sure what their cut off is.
So worst case scenario, I’ll be spending around $3600/yr for this drug. Best case, $60/yr.
All so that I don’t need to deal with this:
Now, that small hive on my face will grow throughout the day and will end up much like the hive on my right leg. So by the end of the day, my face will be really swollen. Hard to say what my fingers will do; sometimes the hives there stay small, sometimes they expand and my fingers get massively swollen. That’s the thing about hives – they love to surprise you.
However, Xolair isn’t necessarily an easy answer. It can’t be self-administered, so once a month for an indefinite period of time, I’m going to have to go to my doctor’s office to get an injection. And they’ll charge me $35 each time I go in, so actually my best case scenario for this entire situation is $480/yr.
Here’s the other thing about Xolair. I get sick on injection days. They do Xolair shots at certain times of the day, once in the morning, and once in the afternoon. So I’ll end up having to take a half day every month, get the afternoon injection, then go home, because I get flu-like symptoms within an hour or two of the injection. But I’m always fine by the next day, so no big deal.
Of course, there are other side effects…such as hair loss. Not everyone experiences this side effect, but I do. I was on it for 6 months last time, and by the second month was losing a lot of hair. Luckily I have a lot of hair, so it really wasn’t noticeable to anyone but me. However, being on this drug indefinitely means losing a lot more hair, to the point where it may be noticeable.
And you know what? I don’t even give a shit. I’ll cut my hair super short and get a damn wig if it gets that bad. Maybe it will; maybe I’ll adjust to the drug and the hair loss will taper off. But I’d rather deal with hair loss than hives, so in my mind it’s a fair trade. I can function adequately with short hair, no hair, or a wig. I can’t always function well with parts of my body covered in hives so bad that the cause major swelling. And the itching. Last week it wasn’t terrible; today, I’m being generous with the Cortisone-10.
Hair loss also won’t kill me. The hives affect different areas at different times, and can appear on the tongue. Tongue swelling can be life threatening. I carry an epi pen everywhere because of this. I’d rather not have to hit myself with an epi injection, because that means a hospital stay. When you get that big of a dose of epinephine, you have to be monitored afterwards.
So that’s where I am. Just dealing with the day to day until my Xolair is ready. Getting some bloodwork done in the meanwhile, so I can see where certain markers are before I start treatment.
I’m grateful for Xolair, but I have lingering concerns about having to go on the worst case scenario drug. I can’t help but wonder what will happen if it ever stops working. I’ll likely inquire next time I see my allergist, since it looks like I’m going to be a long-term Xolair patient.
I will also continue to put my faith in science. Xolair is a fairly new drug, and was developed for people with really bad asthma so that they don’t die. Science will continue to develop new drugs, and big pharma will continue to want to charge lots of money for life-saving drugs, so there’s no doubt in my mind that someday, I’ll have options other than Xolair.
I’m mainly just wondering what happens between today and someday. It’s a question I’m sure the asthma patients must have as well.