2 years 4 months & counting: My battle with CIU

My journey with Chronic Idiopathic Urticaria, or CIU for short, began in October 2013. It started with just one or two little hives. I honestly thought it was just a bug bite or two since we’d had a few warm days that month.

The Itchy Beginnings of CIU

I started getting more and more hives, head to toe. The hives were interconnected. On my legs, I had wheals that were honestly 12-inch diameter sections of my thighs. The wheals would bruise intensely too. My eyes and lips would swell. When I had hives near my joints, and often when you couldn’t see hives, my joints would swell and ache as if I’d injured them. I’m sure people thought I was being abused or I was doing illegal drugs or both at this time. Prednisone would only relieve the CIU while I was actually on it, but the side effects both short term and long term aren’t worth taking it for me. Imagine having thousands of mosquito bites for months and months or years and years (and in many cases decades some fellow sufferers have had this for that long) go through day in and day out. I even developed sores on my tongue during the early stages of the ordeal. I scratched my skin raw and bleeding often back then. Sometimes I still do. It hurts to wear shoes so much at times. If you see me wearing sandals in winter – this is why. I didn’t save pictures from my worst times, unfortunately.

CIU is defined as hives lasting 6 weeks or more. More often than not the cause cannot be found. Most cases first occur in people aged between 20 and 40 years old. Women are twice as likely to get CIU. In the US alone, approximately 1.5 million people have CIU.

Looking For The Cause of My CIU

I started wondering if I was developing new food allergies (since then I’ve tested negative for ANY food allergies, but more on that later). I just cut out any foods that were high in histamine or triggered histamine release. I added several different herbs to my diet. I researched bedbugs and scabies. We tore apart the bedroom, did a DEEP cleaning, vacuumed everything, got bedbug covers for the mattress and bedsprings, and pulled all the clothing out of the closets and dressers and washed and dried it at the hottest settings in an attempt to kill any possible bugs that might be causing my problem.

Numerous Doctors and Specialists

I went first to my urgent care clinic for emergency medications to stop the itching. We opted for me to go off my medications that I take daily for migraines and bipolar disorder in case this was the cause of the hives. You can develop reactions even if you’ve been on medications for years. My hubby was aware and was going to be alert to any major mood swings or anything to indicate that I needed to see a doctor about my bipolar disorder. I am also pretty aware of my mood swings and emotions and know when I need to speak up to my doctors. After being off the medications for nearly 6 weeks didn’t help the hives, I started the medications again.

I went to my primary physician 3 weeks after seeing the PA at urgent care for the hives. He was at a loss of what to do since the CIU rebounded right after the prednisone and did not want to repeat prednisone so quickly. I was taking 50 mg of Benadryl every 6 hours and 150 mg of Zantac every 12 hours, with no relief. He referred me to a dermatologist.

The dermatologist confirmed, “it’s only hives” and put me on hydroxyzine 50 mg twice daily and gave me triamcinolone cream, which is a topical steroid cream. This barely took the edge off the itch. After a follow-up visit showed no real improvement, he referred me to an allergist.

Be understanding and supportive if you have someone with CIU in your life.

Hope
I finally saw an allergist in December 2013. I shouldn’t say finally, because many people go years without getting referred to a specialist who has even half a clue that CIU exists, much less how to attempt to treat it.  His office is over an hour away from my house one way. The allergist performed skin prick allergy tests, which meant I had to go off all antihistamines and steroids for a week before seeing him. I thought that the medications hadn’t been doing anything. Boy was I wrong. That week was miserable and I didn’t sleep because I was itching all over all night and day. If you’ve never had hives, let me tell you – your body feels like it’s on fire. Even now, I consider going outside almost naked and rolling in the snow some days. But then I’m worried that the cold would make more hives come out because it does for some. He gave me my official diagnosis of Chronic Idiopathic Urticaria or CIU.

Even though I’d had skin tests back in 2004 that showed I was allergic to weeds, grass, and trees – this round of testing showed I was allergic to – NOTHING!  This time included foods as well, and all the foods I’ve had reactions to tested negative too. My test for latex was negative too and I have had reactions to it in the past as well. The allergist did tell me to continue to avoid the foods as well as latex although I tested negative because he has had people test negative that were allergic. He did run a histamine release test. Normal levels are less than 16%. Mine was 84%. He told me that mine was one of the highest he’d ever seen. So although I always tend to have a minimal number of hives while in his office, he says he believes me that my hives are as bad as I say they are. Although my allergist didn’t state my hives are autoimmune since my IgE Fc epsilon RI alpha test was negative, upon further research about the histamine release test, my CIU appears to be autoimmune based. (Reviewing this post in the Fall of 2019 – They are definitely AI-based. I have Sjögrens Syndrome. Check out my blog post about my Sjögrens diagnosis.) Gotta love when the body decides it is its own worst enemy.

He started me on hydroxyzine 50 mg three times daily, Zantac 150 mg twice daily, and Xyzal 5 mg once daily. I returned frequently and we added Singulair 10 mg once daily and Allegra 180 mg once daily as needed. I didn’t do well on the Allegra, so we discontinued that.

Xolair, A Miracle or Expensive waste?

Since this hadn’t been controlling my CIU well, we decided to try the big gun Xolair that we had been putting off because we didn’t realize that I qualified to get it covered under the drug manufacturer’s patient assistance programs. Xolair is $1800 a month otherwise. Xolair was approved for CIU in 2014, although it had been used for asthma since 2003.

I started receiving 300 mg Xolair injections monthly in June of 2015. I get half the dose in each arm. It’s relatively painless. There are some side effects. I get some muscle and joint pain for a few days and a little fatigued. I have some hair loss, but I can’t tell if that’s from the Xolair or the hives I get on my scalp. The Xolair doesn’t get rid of the hives completely for me, but I have noticed that if I do go every 4 weeks, they don’t seem as intense. In my online support group, it does seem that those with autoimmune hives, especially if their test results were very elevated, either have to have shots for multiple months to notice a good improvement or achieve medically induced remission, but some don’t respond to Xolair much at all. I’m not giving up yet.

My allergist said that if I want to move on to the next medications – which are immunosuppressants, he’ll refer me on to another doctor (a 3-hour drive with traffic one way) because he’s not that familiar with the medications and would rather send me to someone with more experience. I appreciate that. I’d have to have frequent blood work and followup visits from what I understand as well. But it might be worth it if this continues much longer.

Currently, I’m taking without complete control of my hives:

• hydroxyzine 50 mg three times a day
• Xyzal 5 mg once a day
• Singulair 10 mg once a day
• Zantac 150 mg twice daily
• Xolair 300 mg injection once a month

Other Possible Symptoms of CIU

Other people have symptoms that are more extreme than I have experienced. Although the link in the first sentence to the Mayo Clinic states that CIU is generally not life-threatening, several people in my support group have had anaphylaxis simply as a result of CIU – they have no other allergies. Many have severe angioedema, worse than the swelling I mentioned earlier, to where their eyes well shut, their lips look like they’ve gotten bad filler injections and their throats swell to the point their breathing is impaired. Joints swell to the point it’s unbearable to walk and move and grasp things.

Many people with CIU also have related disorders like urticarial vasculitis, mastocytosis, mast cell activation disorder, delayed pressure urticaria, and a litany of other urticarial disorders. We all experience this disease a bit differently. Just a bit of advice to anyone reading this: Don’t just assume that it’s just a bit of an itch and it’ll go away in a day or two if someone tells you that they experience hives often. Don’t ask us what we’re allergic to. Don’t give suggestions on trying this soap or that laundry detergent. Don’t tell us we need to eat differently. Most likely we’ve tried all that and more and nothing we have done, we use, we eat has caused our hives. It’s not all in our heads, it’s not just a “little itch and we’re blowing it out of proportion.” Be understanding and supportive if you have someone with CIU in your life.

For more information:

• CIU and You A lovely resource where you can find Vicki Lawrence’s story as well (Yes, Mama from Mama’s family is a fellow sufferer!)
• What is CIU? (This is the Xolair site, but has some great info)
• CIU – Mayo Clinic
• Healing Histamine Some people find relief by modifying their diets and decreasing their intake of high histamine and histamine-releasing foods. This isn’t very effective for me – but I do notice that tomatoes, certain berries, and citrus do seem to increase my hives.

*I receive no compensation for any links in this post.*