Hi, my name is Dr. Chet Tharpe, and I’m a board certified allergy specialist in South Carolina.
This blog is in reference to a post on the chronic idiopathic urticaria support group on Facebook. It’s from a member who reports that she’s new to the page and that this is really her first chronic idiopathic urticaria or CIU experience. Just to ensure we are all on the same page, urticaria is just the big medical word for hives or raised, red, itchy patches on the skin.
So this member stated she’s been dealing with it for about six months and basically she’s asking about others’ experiences and insights into the condition. She is confused with all the various treatment options she’s read about and her physicians’ evaluations. She also wonders if her condition could be autoimmune. She said she recently had blood work done but does not have the results yet. Her medicines currently are double doses of antihistamines that do not seem to be helping much. She reports she has bad side effects with hydroxyzine so is also leery about new meds.
So, a lot is going on there. But in summary, you’ve got a patient who’s new to the group with six months of horrible chronic idiopathic urticaria, and just is seeking whatever knowledge and insight she can get. I think it’s very admirable she’s reaching out for any information and advice and if you or a loved one has CIU, you can probably relate.
Chronic idiopathic urticaria, or CIU is one of the most difficult diagnoses I deal with as an allergist. And the obvious main reason is that it is “idiopathic” which means we do not know what the cause is. I often like to joke that idiopathic means the doctor is an idiot and can’t figure it out.
All joking aside, believe it or not, the general medical consensus is not to perform any testing unless there is a good history to suggest testing is needed such as allergy testing, or bloodwork for medical conditions such as a thyroid abnormality or autoimmune condition. Please make no mistake that this statement means we should not look for a cause.
Obviously, it is likely tough for you as the patient to hear that the recommendation is not to test at all. It may make you feel like nothing is getting done and a cause is not being explored. In my early years of treating CIU, I felt the same and ordered blood work or other tests on the vast majority of my patients. And I just know this from experience from seeing 1000s of CIU patients that 99.9% of the test results and bloodwork comes back either normal or just does not assist in the treatment and management of the CIU. Only rarely have I picked up a thyroid issue or similar medical cause that once treated, calmed the CIU. And in these very few instances, the testing was actually predictable as the patient had other clues in the medical history which indicated something was not right. For example a patient with a possible thyroid issue had weight gain, cold spells and constipation and sure enough, her thyroid levels were very low. Allergy testing, which is what we love to do as allergists is usually not helpful either. It can be negative or on the opposite end of the spectrum show lots of positive reactions that have nothing to do with the actual CIU. So again that’s where a good history of triggers that guides the testing is so important.
So the best investigation into a cause is really not the actual tests themselves. In actuality, the best investigation is the thorough history, confirming first we are in fact dealing with CIU and then asking questions about all possible triggers and medical causes. We need to spend time with you by asking a bunch of questions and getting as much information as possible. We shouldn’t just rack up several thousands of dollars in testing just to test to make ourselves or you feel as though we are doing something if the testing is likely not to be helpful. And only after this thorough in-depth history is done, testing should only be performed if absolutely indicated.
So let’s briefly discuss how we first confirm this rash is really urticaria and not something else. Urticaria, which again is the big word for hives, are raised red itchy patches that can appear anywhere on your body that typically lasts for no longer than 24 hours in one isolated spot.
After 24 hours, that one isolated hive should go away. For example, let’s say you have a hive on your forearm, that one spot you could circle it with a pen, should not last longer than 24 hours. You may have other hives all around it, you may have hives on other areas of the body, but that one hive should go away in about 24 hours. And when it goes away, it shouldn’t leave any marks or bruising and you should not even see any traces of it at all, unless you’ve just been digging at it from itching and you’ve bruised or physically irritated your skin. And again, that’s just in one spot, you may have hives coming and going all over your body for several months or years in extreme cases, but each individual hive should come and should go lasting no longer than 24 hours without leaving a mark. Okay, sorry to belabor that point but it’s very important to know exactly the type of skin issue we are dealing with.
So what if we’re not sure if your hives are truly hives. What if they are not resolving within 24 hours or are leaving marks or bruises or causing other skin changes? In this case, you definitely want to discuss this with your physician and a biopsy will probably be considered since other rashes are similar to hives. There’s another entity called urticarial vasculitis. So urticarial really means hive-like and vasculitis means inflammation of the blood vessels. And the reason that’s important is because inflammation of blood vessels can indicate an autoimmune condition and a further workup may be indicated. Also treatment and monitoring may be different. So we want to do everything we can to get the diagnosis right so that you are treated appropriately and have the best chances of a great outcome.
Okay, so another thing to note is chronic it means, well at least in the medical world with respect to this condition, chronic means having hives for more days than not for at least 6 weeks. So if you’ve been suffering from hives for longer than six weeks or so then hey, we define it as chronic.
So once we’ve determined that your condition is chronic urticaria and likely CIU or chronic idiopathic urticaria without any particular underlying cause, there is sort of a general way that I approach treatment.
Now again as I have stated on previous blogs, this is not medical advice. I am not your physician and have no insight into your unique case. This is just my thoughts as a specialist who deals with lots of urticaria.
Typically, the way I approach treating a CIU patient is starting with non-sedating or what we call selective antihistamines such as Allegra which is also called fexofenadine or Zyrtec which is also called cetirizine. I may even try Xyzal which is also called levocetirizine. Actually, the one that I feel does the best in most of my patients is cetirizine or levocetirizine. The problem that I encounter with these however one is that when you push the doses they are more likely to be sedating. So typically, with these selective anti-histamines, depending on your response, your dosing will range from either the normal once a day dosing to twice a day dosing where the dose can be maxed out to 4x the daily dose. Again, the concern is often sedation so this is not safe in all patients. Also, in patients who have kidney issues, going up to 4x the daily dose may not be safe or even effective. So those are the big things that I typically watch out for.. I may also give patients a regimen of breakthrough antihistamines that are sedating to be used as needed on really difficult days. Often, if used regularly, the sedative effect of these sedating antihistamines wears off in about 2 weeks per my clinical experience. This is not ideal and does not happen in every patient but often does occur which is encouraging for patients who do respond to the sedating antihistamines but the sedation really effects them.
Typically, if you don’t respond to maximum doses of antihistamines, I like to already start discussing and starting Xolair. Some doctors may choose to wait and add other meds like other forms of antihistamines called h2 blockers, which are typically acid reducing medicines or some may try another anti-inflammatory medicine called montelukast that blocks inflammatory chemicals called leukotrienes. I’ve rarely seen these medications add benefit and so that’ why my next step is Xolair which is an injection typically given once a month for CIU. Why is this my the next step? The bottom line is that Xolair works for most CIU patients and in my experience has been life-saving in many and it is extremely safe. However, Xolair does need to be injected in your physician’s office, as here is a very low risk of anaphylaxis. So I give all of my patient’s on Xolair epinephrine, and I watch all of my patients after their injections. That being said it’s very, very safe, and thankfully I’ve never encountered anaphylaxis. Typically, the worst thing is, it’s just not going to help at all and thankfully I have only noticed this is a handful of patients.
If Xolair doesn’t help we go down the route of other different medications, namely immunosuppressants and I will absolutely prescribe it in patients if they do not respond to antihistamines or Xolair as CIU is so debilitating. Again, they’re not my go-tos just because they typically have a lot more side effects. These immunosuppressants include cyclosporin, cellcept methotrexate.
I absolutely try to avoid steroids like prednisone, although I will prescribe it also at times if things are bad enough. However, the reason why I avoid prednisone if at all possible is the concern for rebound. So what often happens is, when you prescribe prednisone to a CIU patient, it often helps immensely. But they have a very hard time getting off of it because when you come off, even when tapering gradually, your hives will often come back with a vengeance. And that is the concern. However at that moment in time, if nothing else is helping, you are suffering and the benefits of steroids outweigh the risks, we will use them and then try to taper slowly. We want to do everything we can not to put you on long term prednisone because we know the side effects can be very devastating, unless you get controlled on really low doses. But even we try to avoid that as well.
The bottomline is that your CIU will go away and you will be able to get off all medications. In most, after several months and in some, after several years. But it will resolve and thankfully I do see this occur regularly and it’s an amazing feeling to know that you are no longer suffering. In most cases we often don’t know why they go away, because again we don’t know why they started in the first place.
I also want to mention that I think in the vast majority of people, there’s a stress component either triggering or worsening CIU. Thus, please do everything you can to manage stress in your life. Take time for yourself every day. Consider seeing a specialist such as a psychologist or psychiatrist. Possibly try meditation, yoga. Just start taking a few minutes out of your day to do things you love. It will help get your mind off the hives and will likely improve your hives.
So, as always, I hope this has helped you in your respective situation and also hope it will stimulate a productive discussion with your physician. If you liked this post, please leave me a comment and subscribe to my e-mail list where I can keep you updated on new videos and educational opportunities through ChetTharpeMD.com.
Thanks for your support!
Great days are ahead!