Wednesday, April 19, 2006

It's Official: I Have Cholinergic Urticaria

I have been officially diagnosed with cholinergic urticaria, though I've suspected for the last month that that was the case. The allergist, Dr. Bobbitt of Cincinnati, was as advertised: helpful, thorough, receptive to my thoughts, and confident in his diagnosis. I took the photos (posted a few days ago) with me and they seemed very helpful to him in making his diagnosis. Thankfully, the photos also spared me the agony of having to reproduce the hives for him in the office, and I would suggest others do the same if possible. Take real photos, not something you took with your cell-phone or something. He was so confident that it was cu that we completely skipped all the allergy testing.

He gave me prescriptions for zyrtec (10 mg/1 tablet per day) and hydroxyzine (25 mg/ as needed), and also said I should take 150 mg of Zantac twice a day and 10 mg of loratadine (claritin - 1 pill) once per day. Initially he wanted to prescribe Allegra but I told him that the samples of Allegra I received from my family doctor were pretty useless, so we settled on zyrtec instead. He seemed to suggest that 20 mg (2 tabs) of zyrtec would be best but that insurance normally doesn't cover more than 1 per day, so just to take 1 zyrtec and 1 claritin per day and see how it goes (zyrtec in the morning and claritin at night). He said that the zantac is useful in blocking H2 receptors, while zyrtec is good for only H1 receptors, so maybe that combination will prove effective. Worried that the zyrtec, claritin, and zantac might not be enough, I asked him about hydroxyzine, and while he agreed that it is a pretty powerful antihistamine, he was a bit concerned about the side-effects, mainly the drowsiness and the fact that it really has a detrimental effect on your ability to drive or perform tasks, almost as if you were under the influence of alcohol. He advised that it stays in your system for up to 24 hours and should only be used on an as-need basis.

So I'm hopeful, and relieved. Dr. Bobbitt seems commited to helping me through this, and wants me to stay in touch so that we can adjust the drugs (dosage/type) based on how I'm doing. He said that some of these cases can resolve themselves completely in a matter of months, and most are resolved within 2 years, which was music to my ears.

I'll give the meds a whirl and keep everyone updated. I go back to work tomorrow so hopefully my skin will behave! Stay cool.

26 Comments:

Anonymous Anonymous said...

Jeff,
I had chronic urticaria for almost 3 years. I could keep it under control with prednasone but also was on many antihystamines. My allergist was at a medical convention last year and heard about a new therapy. She gave me an AST test. To make a long story short I went off all my medications and started on very low doses of Cyclosporine for about 7 months. From the day I started the medication I had NO hives. After going off the medication I still have NO hives. Usually if people are going to get hives they get them within the first two weeks of going off the medication. I am now off for almost 4 weeks with no recurrence. If there is a relapse I will go on an additional cycle of Cyclosporine for 3 months. The doctors who conducted the tests have had no one with a relapse after the 3 month course.

3:34 PM  
Anonymous Anonymous said...

I developed Cholinergic Uriticaria hives when I was a freshman in college. It really sucked at first and I did see an allergist. He gave me a long string of medicine which I took for about two weeks. It helped but I refuse to take three pills a day. What do I do now? I deal with it. You become sort of use to it and learn to live with it. While it can be very uncomfortable it is possible to ignore it. I am very weary of taking massive dosses of medication. I will deal with what God gave me.

12:18 PM  
Anonymous Anonymous said...

you must be very religious then.
man if i was religious and i would bloody abuse god in my prayers!
I'm pissed off that ive got this but i dont blame it on
a mythical tale.

7:28 AM  
Anonymous Alice said...

Hi Jeff. Thanks for this blog. My boyfriend started getting recurring hives last fall and has also taken every pill in the book but they keep coming back. This condition really sucks, I feel so badly for him and now it might get worse since it is summer. I'm interested in the comment that Peggy left about the Cyclosporine - I have just been looking around the internet after feeling helpless to do something for him. Let me know if you find a doctor (assume you are in Minneapolis from the Kenwood comment) that will do the AST test for you.
Good luck!

3:53 PM  
Anonymous Anonymous said...

Jeff,

I tried leaving you my complete Hat Write-up on how I cured my hives in 3 days, but it was too long for you blog (2 pages).

I have been 10 years hive free, it was real easy. read my story, if it works for you let me know.

I also posted it on Oprah.com

If you email me I will send it to you.

All the best. Aussie Greg
kingdonco@yahoo.com.au

9:50 PM  
Blogger Serge said...

I was desperate and frustrated, numerous dermatologists and allergistsvisits. Finally, it is official cholinergic urticaria. My symptoms include the following, extreme itching over my entire body, the tip of my nose randomly itches crazy, when running I feel like my sweat is acid (allergic to sweat),any time I drink hot liquid I feel miserable immediately, and cannot even laugh hard, I feel like crap all the time. Ive got insomnia I cant go to deep sleep at all. Tried antihistamines and antidepressants didn’t help at all I live in Indiana and traveled up North to Wisconsin, and could feel a difference and relief in the air outside, except when I walked in any building or got hot. I suspect that dust in air from central air could be one of the triggers

Good news; Originally I came to States from Russia, Last year I traveled to Russia for four months, and as soon as I sat on the plane the whole thing was 100% gone. I could exercise, do sauna, drink hot liquid, anything indoors or outdoors and it never came back. A week later after coming back to the states it came back. I am planning to go back to Russia in a few months, eat healthy, exercise, and boost up my immune system. This condition last for few weeks or so , I have it 2 years
Anybody has any suggestions how to cure it?
Questions and comments welcome.
Best wishes, I hope one day we cure it.

Serge
severe_cu@rambler.ru

Ps Thanks a lot for this website Jeff
If your still here can you let me know your progress?

8:25 PM  
Anonymous Anonymous said...

I think i have Cholinergic Urticaria. Everytime my body heat rises sharply and i begin to sweat my scalp, forehead and chest itch unbearably to the point were my body trembles. Its ruining my life really. Ive had it since i was 13 i am 18 now and i have made an appointment to see a dermatologist, but upon reading other responses it seems more prudent to see an allergist. My GP prescribed me telefast which was useless. The other day i saw a story on a current affairs show about AVENE water products and that they are a 'miracle cure' for many skin conditions i am going to try it. I hate this so much, i would saw off my toes to get rid of it.

9:39 PM  
Anonymous itch said...

i think this has something to do with our homes. I used to live in a different town and never had it till I went to Highschool in the town where my parents now live. after highschool I moved to korea which is very cold in the winter, but I never had anything remotely like what i've had here.

I think Serge is on to something. could it be some kind of construction material that when combined with the heater makes us sensitive to our own body heat/sweat??

I would also consider sawing my toes off if it would permanently get rid of this nightmare.

11:25 PM  
Anonymous Anonymous said...

I have cholinergic urticaria 17 years and nothing work I have took all the med still nothing it sucks

5:34 PM  
Anonymous Anonymous said...

A Mom,
My daughter got it. She is 5 years old. I dont want give her any medications that can poison her system in that very young age. So, this is how we deal with it. Every time she got this reaction, she is itchy in her back around to her belly. The goosebumps, the little hives appear randomly and it turns red when she scratches it. This happens to her especially at bedtime or in the morning when she woke up. I then take a clean towel, wet it with some very warm water, wipe all the places where the reaction appears, then put some vegetable oil or baby oil on it. After some minutes, she stops scatching and the reaction desapears completely. So, my opinion is just try to find a way to deal with it better than destroy your body with medication that will harm you more than this urticaria.

11:18 AM  
Anonymous Anonymous said...

Hi Jeff,

I have had Cholinergic Urticaria since 1999. It was the summer before I started high school. 13 years later and I still have it. I have noticed that if I don't tell people, they don't even notice. As a high school athlete, and now someone is still extremely active, I am pretty much used to it. I barely scratch it, and occasionally the hives get really bad, but most times I don't even notice it. I have never taken medicine for it, but I find regular exercise (5-6 times a week) helps a ton. If I don't exercise for two or more days, they come in a lot stronger in the next workout.
Sorry about the rambling, but I am just so excited to find a blog dedicated to something I felt like I was the only one with.

1:59 PM  
Anonymous Anonymous said...

Is it possible to have this without the visible hives? When I sweat it feels like pins and I itch so bad it hurts. I had itch defense type lotion everywhere (which helps a little). I'm going crazy and am relieved to find I'm not the only one. I actually was concerned something was wrong with my liver. I've heard itchy skin can be a sign of liver problems. I'm making an appt tomorrow.

7:01 PM  
Anonymous Roger said...

You guys are lucky that you found people that know what Cholinergic Urticaria is and not some professionals that will twist their eyebrow trying to believe the "insane" thing that you are trying to explain, which leads into a breakout because now you are the "crazy" talking about getting hives because you are heated.

Anyways, I usually take Zyrtec daily, but I do my best not to take it everyday because I know its very bad to take medicine on a daily basis. One of my question is: how does your doctor recommend you to take 2 Zyrtec per day? I read the label behind and it says 1 per day, because it may cause liver damage. Just be careful, you are trying to cure an illness that I know its awful but also take in consideration what all these medications do to your health and also your organism.

@Serge, that happens to me everytime I am outside the US I dont have this issue, but when I come back I get it back. I guess its something about the environment.

2:57 PM  
Anonymous Anonymous said...

My partner four months ago started with something as simple as an itchy scalp. It slowly turned into small rashes on wrist and torso. Doctors hit it with predisolone and anti histimines. Within two weeks it was a full body acute rash that was diagnosed as urticaria. She ended up in hospital. She got to the point where her joints had swelled so much she could hardly move. She has just finished a 4 month program of cyclosporin which did get rid of the symptoms. Four days into coming off it we are pretty well back to the first point. Itchy scalp, beginning of rashes its only a matter of time before we are back to where we were. The strangest thing is any physical work on areas like pulling out weeds her knees and groins and elbows all just blew up badly.

9:40 AM  
Anonymous Anonymous said...

I've just been diagnosed with the same thing but it's taken many doctors and over 10 years to properly diagnose me! I hope your CU doesn't last as long as mine it's going on 12 or 13 years now and it just gets worse because I become unresponsive to a lot of the medication I'm prescribed after long term use.
Good Luck!!

8:56 PM  
Anonymous Anonymous said...

I've just been diagnosed with the same thing but it's taken many doctors and over 10 years to properly diagnose me! I hope your CU doesn't last as long as mine it's going on 12 or 13 years now and it just gets worse because I become unresponsive to a lot of the medication I'm prescribed after long term use.
Good Luck!!

8:57 PM  
Anonymous Anonymous said...

I've had this for decades...so has my sister. Regardless of where I've lived from the Southwest to the Rockies to Midwest. And oddly, only when I walk...I can get much warmer doing other exercises but have no problem. Antihistamines work perfectly if I take them faithfully every day, walking or no walking. They must build up in your system.

8:03 PM  
Anonymous Anonymous said...

I'm so confused. I was told that I had to sweat in order to get rid of this (which is kinda hard having cholinergic urticaria). When i do sweat which is rarely it doesn't burn it relieves me. Hope this doesn't last long its a very crippling disorder

6:19 AM  
Anonymous Janet T said...

Also check to see if your town uses chloramine instead of chlorine to disinfect the water. Chloramines hang in your clothes and when the chloramine is broken down, it creates chlorine and ammonia, when can cause rashes. just a thought.

4:41 AM  
Anonymous Anonymous said...

@itch I know exactly what you mean about sawing your toes off!!!!!!!!!
I've had it since i was pretty young, don't remember how young really, my whole life I guess.
Been to my GP; useless, seen a neurologist a few years back; equally unproductive. Taken antihistamines which didn't help at all.
The worst thing is I'm ridiculously good at sports, or I used to be at any rate, and X country was always a nightmare for me even though I had a natural ability to do it. I've found that I f i scream a lot and work through the itching whilst exercising I get this perios where it goes away, theres an intense pulsing in my legs, ankle, toes inne and outer thing and it feels great, but sometimes it still comes back if i slow down.

Right now it's 5:34 am and i can't sleep because my feet are randomly itching, i'm getting prickles all over my body.. This has to be one of the more irritating and depressing diseases ever, it's not visibly debilitating so most idiots think you're just making it up. And the fact I'm dark skinned means I don't even present with hives!

My sports teacher, and ll the idiot pupils at school all used to accuse me of wanting to skip sports even though i was the fastest sprinter in my school :( I just want to be rid of this nonsense as it's ruining my life!

1:38 AM  
Anonymous jason said...

Hi Jeff, great post, my names jason from the U.K and i have suffered from C.U for 14 years, it started when i was 12 and i am now 26. I have noticed from reading other posts in some people this problem can be sporadic, unfortunately for me since mine started it hasent let up apart from the short summer we have in the U.K. I am guaranteed an attack of it at least once a day. It was only a few months back that i found out what it was (im not a fan of doctors and when i was younger i was told by a doctor it would go in my 20's). I am hoping now that it has been identified i can find some help and start to lead a normal life.

11:28 AM  
Blogger Hikari Nakane said...

Jeff, thank you for this blog! This all started for me about 7 months ago, and it's totally ruining my life. I used to be a personal trainer, and now I can't exercise at all without breaking out. I have been at a loss as to what to do. All these comments have been helpful. I will go to an allergist asap!

12:19 PM  
Anonymous Edil said...

I think I have Cholinergic Urticaria also. It started when I was about 8 years old. Every time I break a sweat and exposed to a sudden change in ambient temperature, a massive itchiness attack my whole body, from head to toe, even in my genitals, after a few minutes of itching my whole body is covered in hives, my face swollen almost closing my eyes and I feel intense heat coming out from my body.

As time goes on I experimented on how to manage this attack. Like applying hot water (as much as I can bear) on my skin. Also, I am trying to control my self not to itch. But these were like a gamble. Sometimes I won, sometimes I lost. Then one of my office mates recommended VIRLIX Tablet. When ever I feel the attack is about to commence, I immediately take 1 10mg Tablet. It works! Now I'm 35 years old, still I'm having occasional attacks but thanks to my office mate I know to break it.

3:58 AM  
Anonymous Anonymous said...

I believe Peggy meant ASST test, not AST test.

6:20 AM  
Anonymous Anonymous said...

If you suffer from chronic hives. You should really read this. I'm not promoting, endorsing or selling anything. No medication. Lesson your outbreaks naturally.

I've suffered from chronic hives or urticaria ever since I could remember. Now I life my life 95% free of hives.

I'm an Asian male 41 years old. I've had massive attacks or outbreaks at least 3-4 times a year and smaller manageable ones 7-10 times. Yes, I was like you and took prednasone and every other antihistamine out there. (Only one that truly worked for me was benadryl)

Unlike like other people the hives appeared on areas of my body I couldn't cover up such as my face!

During my teenager years the internet was just in its infancy stages there were no blogs or online information, support group to share ideas and to get advice. All the allergologist did was conduct a allergy test on me and suggest I monitor what I ate. THIS PISSED ME OFF AS NOT ONE allergologist out of 15 had anything else new to suggest and I felt that no one could help me. They just got paid for doing the test and in this field is very subjective and not proven. There was no one correct solution to cure my hives. I had to remember that these doctors are only guided by traditional science and proven scientific methods. Its against their practice to suggest any other alternative medication. The only advise I got was to take benadryl on a nightly basis and stay away from histamine triggering foods.

12:42 PM  
Anonymous Anonymous said...

I turned to Chinese herbs and that didn't work either.

Here's what did - This is what helped me keep my hives in check.

1. Stay away from histamine producing or triggering foods. Shrimp, crabs, lobsters, Strawberries, Nuts, Bone marrow and limit your intake of SALT, artificial ingredients and chemicals (flavors) Stay away from any processed food! Hotdogs, luncheon meat, packaged or canned foods.

2. Since 70% of your immune system has to do with your large intestine, small intestine and colon, stomach areas. You need to constantly keep them clean. (Clean you pipes) The cells which fight off and protect your immune system need to be healthy and strong this means eating right - green leafy vegetables.

3. Detox now and start changing your diet and don't let stress get the best of you. Chew your food well.

4. Exercise and sweat as much as you can! Go to a sauna everyday for 30 mins. limit your sodium intake as this prevents you from sweating. You should aim to lose 2-3 lbs of body water everyday and re-hydrate with 3 bottles of water. Do this on a 5-6 times a week. Don't drink tap water. Be careful not to shock your body as this will lower your immune system and trigger hives. So Start off slowly and adjust accordingly to the sauna.

I read posting from a person who had a similar case of hives like myself. He suggested changing the water in your body as much as possible as not much studies done on this topic and its relationship to histamine. 75% of your body is water and if you don't sweat it out or urinate it out of your body then it remains stagment. Focus on trying to replace your body's water as much as possible and keep your colon, intestines clean as often as possible.

I've been following these simple rules for 3 years now and don't have any major outbreaks. Although I still get small hives occasionally, I'd say I'm 90% relieved of my hives and I'm completely off medication.

My diet is 60% green vegetables and fruits, 30% meat (beef and chicken only) 10% pizza, hamburgers, NO FAST FOOD, NO PROCESSED MEAT.

Every morning when I wake up, I eat half a small sized orange, or grapefruit and wait an hour before I drink or eat anything else. This is a great cleanse.

I take my vitamins and drink a very thick shake with high amounts of kayle, spinach, carrots, spinach, banana, green apple, pineapple, and little ginger. Blended using my vitamix. (Get it, its better than any juicer as you get all the vitamins from the foods without wasting)

After meals try to drink hot water with slice of lemon. This serves as a detox as well.

After work, I'm at the gym sweating it out.

Follow this diet and lifestyle and hopefully it works for you as change starts within.

Good Luck!

12:42 PM  

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