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.

Just to make my life more fun than even anal hives can do, I’m 1% of the 1% – I’m what my doctor calls a ‘worst case scenario’ CIU patient, because I’m antihistamine resistant. Many CIU patients can control the hives and swelling by taking OTC or prescription antihistamines when flare ups occur. I can’t.

Why CIU is dangerous, particularly if you are antihistamine resistant, is that the hives and swelling will happen inside your mouth, and can cause your throat to swell up. Because of this, and knowing that I’m a worst case scenario CIU patient, I have to carry epi-pens with me everywhere, all the time. That’s epi-penS, plural. My doctor told me that when a CIU patient does have a flare up that requires an epi-pen, two are often needed. This is very, very unlikely, but it’s best to be prepared. I am prescribed four epis a year. I keep two in my purse and two at home.

Because I’m antihistamine resistant, the only thing that would help prior to starting Xolair was Prednisone, which is a steroid. Steroids are not a good long-term option, as they cause a myriad of other issues if used at the dosage I needed to use over long periods of time. I still have lingering issues from having been on high dosages for 5 months back in late 2015. The other problem with steroids is you tend to have what’s called a rebound reaction when you try to come off of them, which means you have to taper off very, very slowly, or you’ll trigger a massive flare up. I rebounded twice. It’s not fun.

This is where Xolair comes in. The only thing, besides Prednisone, that keeps my CIU under control is Xolair. It was developed for patients with severe asthma, but works well for CIU, and is in the process of being approved to help children with severe allergies, such as peanuts, to mitigate the effects of accidental ingestion. It’s a cool drug and one I’m thrilled to have access to, because in the past, I’d either have to be on steroids long-term, or deal with flare ups and hope I never needed to use my epi-pens.

Xolair is by prescription only, requires going through a special pharmacy, and is really expensive. Luckily they do offer financial assistance in the form of a $5 copay. However, it can only be administered by injection at a doctor’s office, so you can incur fees for having to visit the doctor’s office, and may have to miss work sometimes. This can impact its accessibility, depending on if your doctor’s office has reasonable appointment times. Mine does not, but I have the kind of job where I can take an afternoon off here and there, and a boss who understands my condition and supports me getting the shots as often as I need. Not everyone has this kind of work environment, or easy access to transportation, or money to pay for other doctor’s office fees besides the $5 copay (I get charged around $180 for my doctor’s office to give me two shots.)

Xolair prevents swelling and large hives. I still periodically get small hives, but I consider this to be no big deal. Because my condition is so extreme, I would guess that if you have a less extreme form, Xolair might possibly knock out all hives.

Xolair does have some side effects. I feel fluish after getting my shots, but that clears up within 24 hours. I also experience hair loss for a week or two after my shots – not enough that anyone else would notice, but enough that I notice. I have thick hair, but for people with thinner hair, the potential for some hair loss might be anxiety-inducing.

The amount of time between Xolair shots varies by person. My doctor has told me he has some patients who need it once a month, and others who only get it twice a year. I get it about every 12 weeks; at that frequency, I usually get small hives in between shots, but I’m willing to live with that. The massive swelling seems to occur at the 14-15 week point. Every CIU patient is different in this regard, so if you start Xolair, your doctor may push your shots out by a week or two every time just to see what you can tolerate. It took me about 2 years to figure out that I’m good until week 14 or 15.

CIU can stop as suddenly as it starts. They don’t exactly know what triggers it to start, and what triggers it to stop. My doctor will periodically taper CIU patients off of Xolair to see if any flare ups occur. He’s hesitant to do this with me, because the one time we tried, it didn’t end well, and because I do still get small hives in between doses. But people have successfully come off Xolair and found that no further flare ups happened, so it’s possible that the CIU can stop being an issue.

Recommendations if you have or think you might have CIU:

  • Take photos to show to your doctor so they can see what you’re dealing with. During my really bad flare ups, I had a weird every other day/every two day pattern going, where I’d be super swollen for a day or two, then okay for a day. This is not uncommon, but your medical providers do appreciate photos, especially if they’re seeing you on a good day. If you can, print them out and bring them with you, along with dates of when the swelling happened. If you can’t print, just having them on a phone or tablet you can bring with you is good. Anything that helps your doctor see what’s happening is beneficial.
  • If you haven’t had a recent allergy test, you will likely need to get one done so they can rule out allergies. You cannot get an allergy test while on Prednisone, so if you were given pred by an ER or Urgent Care, you’ll have to taper off that first.
  • With Prednisone, don’t taper on your own, let your doctor guide that, and don’t get impatient. Rebound reactions are really no fun and just mean that you’ll be on pred that much longer.
  • You may still need pred after getting your first Xolair shot. Xolair doesn’t work overnight, so don’t get discouraged and give up hope. I promise it does improve – anyone who has a more mild case than I do (which will be most of you) will easily be able to get off pred once you’re on Xolair, but it does take a little time.
  • Carry some Cortisone cream with you. It doesn’t decrease swelling (at least for me), but it does help with itchiness.
  • Don’t wear jewelry. Sometimes the hives and swelling come on slowly, sometimes it’s a little faster.
  • Avoid overly constricting clothing if you can.
  • If you’re on financial assistance for your Xolair, be aware of when it expires and take steps to renew in a timely manner. Take into account extra time needed if there’s a major holiday near your renewal time.
  • Ask for an itemized statement from your doctor so you know what they charge for administering Xolair.
  • Make sure you understand how your insurance works, how much they’ll pay for, etc. Mine changed their policies and now I pay more out of pocket.
  • If you can, try to find a doctor who has experience with CIU patients. Not all doctors will. This is arguably harder if you live in a rural area. (If you live in or near the Denver area, I highly recommend Colorado Allergy & Asthma. It’s a large practice with multiple locations, and I’m not their only CIU patient so they do have experience with us.)
  • Research the hell out of this condition. Reach out to others who have it (including me – see below.) Use Google Alerts to alert you when Xolair or CIU or your specialty pharma is in the news. Just make sure you’re educating yourself and keeping up on news.

FYI for anyone finding this posting at random:

This is such a weird condition to have, and often, you probably won’t ever know anyone else who’s dealt with it. I’m very happy to share what I know, share my experience, and answer any questions that I can (keeping in mind that I’m not a medical expert, just a patient.)

Any comments left on this entry go directly to my email, so if anyone has any questions or wants to chat about CIU or Xolair – even if you’re reading this way into the future – please feel free to comment, because I will see it, and I will respond. You can give me an email address – all comments from first-time posters have to be approved before I allow the comment to post, so I won’t post a comment with private info in it. Emails only please, I’m uncomfortable talking to random strangers (I’m sure you’re all lovely, it’s just my anxiety.) If you’re not a first time poster and want to contact me, leave a note saying as much and we’ll figure something out.

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