Chronic hives & Xolair

I see a lot of people hitting my chronic hives tag, thus I wanted to post an update for anyone scouring the internet for information about this rather strange condition.

I have something called Chronic Idiopathic Urticaria (CIU), which is a fancy way of saying ‘chronic hives and swelling that happens really often and we don’t know why‘. If you have CIU, it means you’re having consistent outbreaks, and there’s no known allergen causing them.

Also, we’re not talking small hives here – we’re talking massive hives and swelling, particularly around joints. Here are two photos – keep in mind, these are not the worst photos I have – but I feel like they show what CIU looks like:

Think head to toe giant hives and swelling of random body parts – that’s CIU. I’ve had both eyes swell shut, both ears swell up, massive swelling of the cheeks and neck to the point where I looked like an evil chipmunk, and I’ve had swelling inside my nose, mouth, and anus. (Anal hives are really not fun.)

Less than 1% of the population has CIU. It seems to be autoimmune, but can happen in conjunction with other medical issues.

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Woes of the chronically ill 99%

It’s been an interesting day.

I had to leave work early due to pain which may or may not be Lupus-related. My Lupus is being a little bitch in general, so I finally made an appointment with a new doctor in at a local university that happens to be a teaching hospital.

Then I went to my appointment, to find that the level of care was night and day level different than what I had been receiving. I’m now under the care of physicians at the local teaching university, all of whom have faculty appointments. I finally have a doctor who understands my frustrations, is familiar with both Lupus and CIU, and doesn’t think we need to wait until my ANA markers look a certain way or I end up in full-blown kidney failure to start trying to calm my immune system down.

I also talked to them about my concerns about what may happen to the assistance program that helps me pay for my CIU drug, which I can’t afford on my own, with the changes that are coming under people determined to gut the healthcare system and privatize everything. They didn’t have a solution, per se, but they get me. And they have people who can advise and guide me through what my options are, should I lose that financial assistance.

While I am still in pain at the moment, and fatigued, I feel more optimistic about my personal health situation than I have in a while. New primary care practice is phenomenal, as is the practice that I see for the chronic hives.

At least, I’m as optimistic as I can feel knowing that my immune system is trying to kill me, that a medication I depend on costs $18,000 a month and I can’t afford that if my insurance and/or financial assistance get fucked with, and that the incoming fascist regime Republican government considers me, a woman, less than human and not deserving of bodily autonomy or access to safe, specialized healthcare.

It’s a weird mix of “I finally feel like I have a really good team of doctors who I feel listen, understand, and are going to give me top notch care” and “Not everyone has the privilege I have to be able to access the healthcare providers I’m able to access, and that access is about to get a lot more difficult, and that’s profoundly unfair.”

I’m taking tomorrow off as both a physical and mental health day. I have a lot cooking in my brain right now, and I’m hoping to take some time tomorrow to finally start writing about some of it.

Life with Chronic Idiopathic Urticaria

CIU is a fairly rare disorder that means you break out in hives and swelling for no discernible reason. About half of CIU patients will not respond to antihistamines. 

And this is what it looks like…

And when the hives fade, the bruising and discoloration…

This is a strange and uncomfortable and disruptive issue. I’ve woken up with both eyes swollen shut. I carry epi pens because the tongue can swell up, and that’s potentially life threatening.

The only medication that controls this -besides Prednisone, which is not a good long term option, is not affordable. I’m on financial assistance…just to be able to get a med to improve my quality of life, and ensure that my tongue and throat don’t swell up.

Now epi pen prices are higher.

CIU patients are impacted by pharmaceutical greed.

It’s not right.