cholinergic urticaria/hives

I have exercise induced urticaria.  I want to know if anyone else has this and if so what causes it and what can you do to control it without a prescription.  I am desperate.  I am a runner that does not want a prescription.  I suffer from asthma and the hives are worse when my asthma is worse.  I am not taking anything for asthma except for an inhaler at the moment.  I am tired of depending on drugs.  I know that may sound ignorant but I want to help myself to help itself if you know what I mean.

[TessLea]

I have the exact same problem, runner also, asthma too.  I don't like taking the meds either but the rash was so bad in the beginning that I slept most of the time on meds so as not to destroy my skin.  They don't even really know what causes this, allergic to your own sweat, food allergies, asthma...  if they don't know how can we?

As I sit here typing this, I have a breakout on my shoulder and my forearm.  After diagnosis, I searched and found some information.  Just type in 'exercise induced rash'  you'll find some stuff.

Right now I try not to eat anything an hour before my workout and I take a 10mg lortadine and hour prior to training.  It seems to help a bit but it isn't going away.  It's been happening since last February, I was preparing to run a 10K and I didn't get to thanks to the rash.  Now I am 16 pounds over my running weight because I locked myself in the house for 5 months covered in a rash every single day.

Keep in touch, I know no one in my area with this problem.

[audiophile]

I have the exact symptoms that flare up at the gym.  I am less of a runner more a weight lifter.  Red patches appear as I am lifting.  I am taking 10mg Zyrtec everyday.  Does seem to make any difference.  I also use anti itch cream / lotion from Eucerine.  Very frustrating!  Before this happened a couple of months ago, I had zero allergies to anything and I am 40 years old.

[Nic_George]

I am very sympathetic, I have suffered from Cholinergic Urticaria (exercise allergies) for twelve years since developing them at the age of 15. The rash develop during or sometimes slightly after running or working out at the gym.

The symptoms persisted for four years, vanished for a year, returned more aggressively (I would break out in a rash after any exertion, eating hot food or emotional stress)  and persisted for a year, vanished for a further five years and then returned again just recently.

Initially, most anti-histamines were not effective at treating it but in later years I found Fexofenadine hydrochloride 180 mg (Allegra/Telfast) prevents attacks.  

There is plenty of good literature available online on Cholinergic Allergies (try searching in www.scholar.google.com). Basically, the average time you will suffer is 7 years, although people can suffer on and off for 30 years. I am sorry to tell you this but apparently there is NOTHING you can do to get rid of it. It is ironic, but that was the best advice I was ever given because I stopped searching in desperation for a cure.

I suggest you learn to manage the allergy. I take Fexofenadine hydrochloride 180 every morning. Most research I have read suggests this medicine should not damage your health if taken over a long period (although I give my body rest from it for a few days at a time when I don’t plan to do any exercise.  

Don't feel lonely, it occurs in about 15 % of people at some point, and about 0.5 % of people will have on going problems, so there are plenty of us around.

[camjam]

Hi, I have this awful itch when I run or walk long distances.  My thighs mostly, but sometimes it will spread to my butt and sides.  It is the weirdest thing.  I have suffered from it for years, but no I want to run and it is limiting me.  I can do other cardio no problem, it is just the running motion that gets me for some reason.  

[jcam72]

I too have had this problem, cholinergic urticaria or mitochondrial urticaria, for over 14 years.  They told me it would only last 10 but guess they were wrong.  I take Reactine (Citrizine sp?) 10 mg during the summer and whenever I think I may break out.  Walking around the mall, someone yelling at me, any exercise can trigger it.  It basically comes with an increase in heart rate.  The Dr. who diagnosed me (4 doctors later) explained it like this... when you temperature goes up, the message gets sent to your mast cells to sweat except your mast cells mess up the message and release histamine instead causing the hives.  

[donna63]

I am 45 and have had this since I was 18.  I am not a runner but if I just want to walk briskly anytime between 10 and 30 minutes I will start to itch at my ankles and it moves up to my thighs until I can't stand it anymore.  I get little red raised bumps and start to scratch like a crazy woman.  I am able to get on an olyptical but not a treadmill which seems really weird.  I can't even walk on my lunchhour for fear that I will get a breakout.  It's hard to even walk the rest of the way home once it starts to itch.  My doctors all think I am crazy but at least now thanks to the internet I see i am not alone.  I have tried antihistimines but they make me so tired it kind of defeats the purpose of wanting to exercise to get more energy.  it is very frustrating.  

[Dr_Aparna]

Hi,
Cholinergic urticaria is a subcategory of physical urticaria (aka hives) that is a skin rash brought on by a hypersensitive reaction to body heat. Symptoms follow any stimulus to sweat such as exercise (sometimes called exercise-induced urticaria), heat from the sun (which could also indicate solar urticaria), saunas, hot showers (reaction to water can also indicate water urticaria), spicy foods which may cause an increase in body temperature or even stress due to blushing or anger. Some people only have symptoms during the winter months where their body temperature rises when it is unacclimatized to heat.
The rash typically develops within a few minutes of a rise in body temperature but can take longer to appear visibly on the skin. The visible rash is often preceded by a general warming of the skin or itchiness. The hives last from a half an hour to several hours with a mean time of 80 minutes, with the duration often contingent on the severity of the outbreak.
Cholinergic urticaria can be very difficult to treat. Most treatment plans for cholinergic urticaria involve being aware of one's triggers.
Drug treatment is typically in the form of antihistamines,H2-receptor antagonists such as cimetidine.
As the disease may be physiological in origin, psychological treatments such as stress management can sometimes lessen severity and occurrence.
ref:http://en.wikipedia.org/wiki/Cholinergic_urticaria

[aloharn]

Hello My Fellow Itchers,

Lately I have had a lot going on.  We just moved from Colorado to Ohio to be with my husbands family, I am an RN and it took 2 months to even get my nursing license here, I still can't find a job that will hire me right away... So I've got a lot of stressors here.  I started to break out about 2 weeks ago after being attacked by bugs when we went camping.  I thought that the new hives were from mosquitos that were getting me in our house and when I let the dogs out - but I started covering myself up and using "Off" and kept getting them.  Then they started in huge clusters underneath my clothing and started to merge together to form COLOSSIAL sized ones.  I always thought that "nerves" causing things were kind of a cop-out for symptoms, but now I know better.  Trying to control it with Hydrocortisone 1% (ineffective), triaminaclone (effective for 10-30 seconds), daily doses of Zyrtec 10mg + Benadryl 25-50mg (effective but makes me too sleepy - at least I get some good rest and the hives are totally resolved when I wake).  I am just sick of medicine and itching already.  Totally frightened that it will still plague me after I start working.  Can't believe there isn't an easier solution.  No sense in even going to a doc.

[Sarha]

I also have it. I got it when i was nine i've had it for seven years.I'm not sure if i'ts a more severe disease or not, every time i run or exercise my eyes swell, it takes two days for it to go down,i also break out in a rash, which lasts a couple of hours. i have tried zyrtec and claritin,and other meds, but nothing seems to be working.

[fazed32]

Hey everyone. I've had these rashes for about three years and I only recently started taking medications but reading these comments is making me wonder if theres a point because I've been extremelly exausted from the hydroxyz hcl. I really want this to end, it' has interfered with my life in so many different ways. I use to run and work out a lot, as I see most of you have as well, but I completely stopped because I noticed that the more I sweat, the more spots come out.

I've read somewhere that UV light might be a solution? Is that possible? Does anyone have any experience with that?

Also, if you have had this condition and it did go away, tell how, if it slowly disappeared or it just all together just never came back?  It seems like such a leisure to never have this ever again.

[margypops]

Can I join the itch club? I first got the Itch after Dental treatment I thought something like the Numbing agent caused it ,it lasted the first time for a year mostly neck area and some on the arms, went away, came back 4 weeks ago again with Dental work, the Dentist says No not anything he did or gave me , put me on antibiotics!! I have noticed a definate pattern to it, I dont exercise like you guys, OK I am lazy nowadays! but even if I get warm like tying now it flares up, I also think mine is Solar induced as I live in a pretty warm area of CA and it is worse now.Yup I have tried all you have every cream ,pill, potion on the Planet, the drug companys should award me for buying all their products,nothing has helped in fact their drugs sometimes make it worse.I guess I will have to put up with it for another 7 years.if I   place a cold wet cloth on the site for relief,that helps.

[robing3]

I have had this for approximately 8 years.  Very debilitating as when I get warm, just sitting outside, running errands, going in and out of a/c.  It gets so bad that my throat, eyes, lips, tongue & ears even swell.  The throat swelling started about 4 years ago and my epi pen definately helps halt the progression.

I take Zyrtec every day for the itch and a couple of benedryls before my workout but still manage to scare everyone in the gym.

MY SAVING GRACE - Last year, for totally unrelated reasons, I was prescribed 10 mg progesteron.  From some of the things I've seen on the internet, it can re-set the mast cells.  I was red-free, itch-free, rash-free for about 6 months.  My doctor and I are repeating the treatment as we speak to see if it works again.  I'll let you know.  I felt truly liberated for those 6 months!
robin/kansas city

[dmass84]

I have been active all my life, including playing college football.  My rash started about a year after graduation and is induced by just about anything: heat, anxiety, definately exercise, and I sometimes even just wake up with them on my arms.  I have taken claritin, clarinex, zyrtec, and benadryl, none really do much.  I have to take crowded public transit to work every day, and it gets real bad.  The strangest thing happened to make them go away (although they are now back).  I got married on 8/8/08 and they dissapeared for half of my honeymoon for no reason.  i was obviously very active during that time (oh yeah) and not a single itch or bump.  the rash and itch came back the day before we came back from the honeymoon.  too weird.

[shan125697]

Yesterday I was diagnosed with Cholinergic urticaria. I was so relieved to have a name I could research as I have been badly itching for 3 months. It started with small white rash like bumps on my forearms and morphed into what i was convinced were spider bites and eventually thought must be cancer.
It went from my ankles (the worst) to my legs (burning sensation on shins) and to my arms, back, stomach, and chest. I was exhausted by trying to figure out what triggered it (clothing? detergent? soaps?) and was reduced to tears when taking hot showers. Falling asleep was difficult at times because I itched so badly.
My mom, with a similar condition, was diagnosed with neurodermitis, which I now think was a mis-diagnosis. I have been reading a lot this morning and there might be a genetic connection with CU. This would make sense as my sister has a mild allergy to the sun.
I found this website particularly helpful-
http://catcubed.com/2007/04/28/wikis-hives-and-cholinergic-urticaria-oh-my/

[timothyx]

Thank god i'm not alone.

I'm 18 years old and about 6 months ago I developed Cholinergic Uticaria. At first I subconsciously ignored it as a temporary thing and slowly started avoided exercise and cardio type work. Until it got so bad that I couldn't work my job I began to seek the help of doctors. With the slightest activity I would develop a fiery intensely itching rash (or red bumps) over my entire body. It would start at my legs and I knew it was coming then would spread to my neck, chest, arms and eventually everywhere. I'd find myself dancing around the house like a mad man itching and whining rolling around on the carpet trying to itch. I'd even be laughing in pain sometimes at the ridiculousness of it. I found that slashing myself with water (manual sweating I call it) would really help. As long as I kept a water bottle with me and clothes i could get wet i'd be ok. This is hard to do at work though. My dermatologist couldn't diagnose it and 4 doctors later (at the Allergist clinic) She told me what it was. She prescribed more antihistamines of which I have yet to start taking tomorrow. I really hope it will fix this and after reading all of your posts I can believe I might have to deal with this for up to 30 - 40 years possibly. I imagine myself getting really fat because I cant do work. This really is the "lazy" condition. You have to keep telling people why your not working or helping them work with things because of this skin problem your trying to prevent and some people just think your lazy.

Goodluck :(

[lisalep]

What a horrible condition we all have!  I've been dealing with this for 15 years!  However it's gotten worse over the past 5.  I've seen lots of doctors and finally an allergist told me what it was!  I itch like crazy if I get slightly warm when I am having an outbreak.  Mine comes and goes.  I will have it for 2 weeks then feel great for 2.  Then bam it's back!  I tried benadryl and claritin and those didn't work.  Last summer I was on Allegra and it was wonderful for 6 months then stopped working.  I just recently started doubling the allergra dose, but it is not working.  I am sooo sick of not being able to excercise.  I will get in great shape and then I can't work out for weeks and have to start all over again!  My doctor told me that certain people react to antihistmines differently than others, so maybe try all.  I am about to start cetirizine (Zyrtec).  I can only hope it will give me another 6 months.  Here's a new twist....I drink decaffinated coffee and when I do it's worse.  Anyone notice this?  I know that there are chemicals in it so maybe???  I have just cut it out, can only hope it would be that easy!  Good luck to everyone!

[gommer]

I''ve had the same type of heat/stress/sweat induced itching for 9 years and have been on every medication imaginable.  I also went through 6+ weeks of UV Light treatments and no effect at all.  So save your time if you or anyone else is thing of doing it. Even the Cleveland Clinic Dermatology doctors could only find that I am allergic to nickel and somewhat to cobalt. But were unable to give me any definitive diagnosis.  Just histamines.  I even moved to the mountains of Colorado from Cleveland to be in the drier and cooler temps.  Helps as long as I am calm and my body temperature stays normal.  Good luck.

[charlestonedwards]

I too have been diagnosed with Cholinergic Urticaria.  I am glad that I am not the only one out there with the embarrassment of an uncontrollable itching spell while trying to work, getting nervous, or walking into a warm environment. However, I am very sympathetic to all of you because this is something that none of us could ever predict. My spells last 5 minutes before I break out into a cold sweat and then I am all set for the rest of the day.  However, it's the worst 5 minutes that I can ever imagine and sometimes not even predictable unless I am going for a run.  This winter has been the roughest for me out of the 3 years that I have suffered from this, to the point I have had to run to many public restrooms to hide myself from what was going on.  I do not believe in taking drugs for this because I love to run and remain active and am just frankly afraid of being dependent on a drug no matter how safe someone says it is.  I am going to subscribe to stay on this watch list with the hope that there is a cure out there or a diagnosis of an allergy that we all have in common that can be eliminated...like too many carbs or sugars...who knows!  Good luck!!

[ExMarathoner]

I have had this problem, mine induced solely by running or brisk walking, for over 5 years and just today decided to do some internet searching on the issue. I've found some great information and was happy to find this forum. I feel for those of you who have this occur all the time, not just related to exercise - I can't even imagine that.

For anyone like me, who was boggled by the specific-ness of the itchy skin related to running versus other activities, it's good to know we're not going crazy in thinking we're suddenly "allergic to running". For me, this started after running religiously - cross country and track all through high school & college, 10Ks, 5Ks on weekends, and then after my 5th marathon at age 28 I took a few months off from running. When I started up again for runs the hives & itchiness started – every time I ran. (Mine starts on my thighs and moves up my stomach & back.) I'd heard about how capillaries can constrict after inactivity and that the burning sensation would go away once I started running regularly again. I tried to run through it, thinking my capillaries just needed to "get with the program", but that never happened.
I never saw a doctor, thinking I would sound crazy. The oddest thing is that I can go mountain biking, do workout videos, hot yoga, skiing, hiking...you name it...ANYTHING but running, and I'll be fine. (Similar to an earlier post where the elliptical machine would be OK but not running.) I've assumed it has something to do with the impact and vibration of running. I think I'll just try a short jog every now and then and see if I still have this condition or if it has run its course and left me as mysteriously as it showed up. I plan to also do some experiments with antihistimines (I've even read about Pepcid working), running in hot vs cold weather, and running on an empty stomach - to help determine triggers.
Anyhow, I wanted to share my story for those with similar running-related itching, and also share the best links I found. For anyone with exercise-related hives, it seems important for you to distinguish between Cholinergic Urticaria and Exercise-Induced Anaphylaxis (EIA). The latter is less common but can be very dangerous, and may require carrying an Epi-Pen. For those of you who get light-headed or restricted breathing along with your rash you should check this out.

Great running article on EIA & CU: http://runningtimes.com/Article.aspx?ArticleID=7006
Also see running issues 5 & 6 on this site: http://running.about.com/od/illnessesandrunning/ss/embarrassing_6.htm

[myitchylife]

I've always hated taking medication but had to start a prescription to manage my cholinergic urticaria. I take 5mg of xyzal (pill form) a night when I know I'm going to exercise or be active the next day. It prevents me from getting that itchy feeling all over (especially on my scalp) and the hives I used to get. I still get patches of redness all over my arms, legs and mid section but I don't care as long as I don't get itchy hives. It's really changed my life for the better as now I can actually go outdoors and be active. The redness can be unsightly but I was more debilitated by the itchy, irritated feeling which deterred me from being active. I hate this condition but I've learned to manage it.

[wab24]

I have gotten hives only a couple of times.  My main problem is when I get warm from showers, running, walking, etc. I have tingling and numbness in my feet, hands and face.  It all started this spring and now that the weather is warmer it's worse.  Does anyone else have the tingling?

[madhumangaljoshi]

I am having this symptoms from past 8 years, in monsoon when my body gets warmed by anything(exercise, running, anger, sex) my trunk covered by these water filled bumps & etching starts.  

[profgal]

I get this too but mine is from my own body temp. Its not always when I work out but it used to be. Now I am constantly on antihistamines (Zyrtec D by day, xyzal by night). But I am soo tired of the meds. I am irritable sometimes and tired and fuzzy. I am trying to find an alternative. Besides the regular red bumpy hives I have been getting weird splotches in random spots on my hands and arms. Its bizarre and itchy. It makes no sense. They are in no real pattern. Its beyond baffling. I can't help but wonder if there isn't something else to this. I too am athletic but I am not a runner. I just work out alot. There is so little research out there on this, according to my phd./md allergy doc.

[Sid89]

For me, severe itching probably started during the winter of 07( I was then 18yrs old). It used to get very itchy esp. on my back whenever I used to enter a heater building or a room. After 3 frustrating months of feeling helpless( I was on no meds at that time), I knew this problem did not seem transient. Infact, being an avid sportslover, I was fearing that I would never be able to play anything again. Thanks to the internet, i came to realize that this problem was known by the name of Cholinergic Urticarea. It was again confirmed when I met with a dermatologist during March 2008. He told me that this problem could last upto 7 years. He prescribed me Xyzal tablets. Since then I have been on Xyzal every single night and I have got to say the condition has improved dramatically. During my recent summer hols this year, I experimented by stopping the meds.It used to pain like hell when I used to workout. But after working out for 2 or more days, I felt more comfortable. Every single day I tried sweating myself out. Suprisingly, I went all throught the summer( 3 months) having just taken a single tablet of Xyzal. Now I am back on my meds since school has started and I do not have enough time for workouts. I do believe working out everyday and crossing the pain barrier is very helpful is relieving ourselves of this problem. I know how utterly hopeless people can feel when confronted with an unknown painful problem but please never lose hope. That is what I have learnt all through this.
Hope everyone is cured of this as soon as possible.
Cheers!
Sid/ Kansas City

[soccermetal]

I am a 14 year old mexican-american male living in the U.S. I have been playing soccer all my life and this season i couldnt play because i developed what i think is called exercised induced urticaria.The itching begins in my chest to my back and my face.What i have noticed that works is i take loratadine raniditine and hydroxyzine! I berely started this treatment but i noticed a change in the itchiness and the redness is almost completely gone!!!! I know how you guys feel and it is hard especially because ive always exercised all my life and i may lose my body! I wish this didnt happen because i wanted to play soccer in high school, get recruited to a good college and play professional soccer! Things happen for a reason right guys

[soccermetal]

I am a 14 year old mexican-american male living in the U.S. I have been playing soccer all my life and this season i couldnt play because i developed what i think is called exercised induced urticaria.The itching begins in my chest to my back and my face.What i have noticed that works is i take loratadine raniditine and hydroxyzine! I berely started this treatment but i noticed a change in the itchiness and the redness is almost completely gone!!!! I know how you guys feel and it is hard especially because ive always exercised all my life and i may lose my body! I wish this didnt happen because i wanted to play soccer in high school, get recruited to a good college and play professional soccer! Things happen for a reason right guys

[itchiban]

I've been itching on and off in the last five years -- that's how far back my health diary started --- and I'm not sure if mine is induced by exercise, change in weather or a combination of both or something else altogether. What I know is that every onset of spring and winter, I get this itchy, red, flat wheal around my neck and an itchy, tiny bumps under my clavicles and lately ...very tiny bums on my forearms and hands.

Since I am also taking a hypertension and cholesterol meds, My GP thought that perhaps I am allergic to the meds. He prescribed 10 mgLoratidine and 150 mg Zantac to be taken together at night to manage the itch. I had some relief for about a month and now the combination pills are no longer working.

Nervously, I experimented not taking my hypertension and cholesterol pill for a week to see if the itching subsides or goes away then I am really certain the itchy bumps are side effects of the pills. Today is the 7th day of my being pill-free but I still get the itchy bumps during the day and becoming worse at night.

Since I've already tried the other topicals (hydrocortisone, triamcinolone, Aveeno for itchy, dry skin, etc) I thought I'd try Vick's Vaporub. I've read somewhere that it's aldo good for insect bites and itches. We moved to the Middle East two months ago and I couldn't find any Vick's vaporub here but they have Tiger Balm which is supposed to work like Vick's. I applied it on my forearms last night and this morning, I didn't itch,  there were only traces of the bumps, what showed were shiny, flat top of what used to be the itchy bumps. However, after drinking my usual 2 cups of coffee this morning, about an hour later, the itches returned.

Has anyone of you ever experienced drinking coffee and feeling the bumps returning and itching afterwards?

[capricornguy]

I was 22 when I had CU.   In summer time, I would get really hot and itchy.  I would take a cold shower and once my body temperature rose again, I would itch.  It felt like hundreds of bees were stinging you.  I was so frustrated and felt hopeless, I was even thinking about suicide.  My friend's mother heard about it and told me that there is a doctor in Taiwan who might be able to help.  So I went.  I would do anything to make this go away.  Oh, btw, my arms and legs stopped sweating for no reason.  The doctor was in his 70's or 80's.  I told me my symptoms and he drew blood and mixed with his medicine and injected back in me.  I was sweating instantly.  I was still itching, but it got a lot better.  It went away completely about 5-6 years.  Now it's back.  I'm planning on a trip to see the doctor again in a week.  I will keep you guys posted.

[snarfblat82]

For me it's been going on for about 4 years.  It started out with running only, but now I notice that I have a terrible problem if I go to the beach and swim or body surf.  The hives attack my eyes first and the swelling can last for days, though it usually diappears after just a couple hours when I work out.  While I perfer natural remedies I won't say no to a pill.  But for me it seems antihistamines make the hives worse--even the natural ones.
Anyway two things have helped me, and unfortunately neither are easily accessible or affordable.  There's a massage therapy clinic nearby that has an infrared sauna.  Although it's intensely hot and I sweat a ton, no hives.  After sitting for 45 minutes I can run for two hours if I want and the hives never show up.  I paid $40/month for unlimited use.  I doubt ordinary steam or dry sauna's would have the same effect--they might cause the hives to get worse as you all know.
What I use now is microcurrent therapy.  You can research this online (not the same as a TENS unit), but I purchased a machine from a naturopath and use it 1-2 times a week on a detox setting for 20 minutes.  Aside from a number of other health benefits it keeps the hives at bay.  The machine ran me $2000 (...yes, I know), but I had the chance to try out a friend's beforehand so I knew it worked.  I absolutely love it (it treats any kind of pain you may have and even depression), but I had to save my pennies for quite a while to afford it.  
Hope this helps.

[conni000123]

My son starting developing this baffling condition when he was 14, he is now 15. It began during the beginning of this school year during football season and I knew something was terribly wrong. He breaks out in this horrifying rash everytime he sweats, gets nervous, anxious, upset, etc. We took him to the family Dr. where he was referred to the allergist. From there many allergy tests were performed and it was determined that he was allergic to a number of things (grasses, trees, etc). For about 6  months he was just taking xyzal, and singulair, along with a nasal steroid spray called nasonex. He also has an epi-pen for emergencies that we havent had to use.  He is still currently taking those medications. They started allergy shots about 4 1/2 months ago and he is still currently taking those as well. His symptoms didnt change and about a month and a half ago, I took him back to the family Dr. and told him I was fed up and didnt think enough was being done to find out what he had. I knew it wasnt just simply allergies. The dr. ran some blood tests and some of his numbers came back with a frightening result. A couple of the tests (ANA and speckled )were elevated or abnormal. Now I was really scared, as (after researching) these are indicators for a positive Lupus result. We were referred to a rheumatologist and she ruled out any autoimmune disorders  (Thank God). She also declared that his numbers were just haywire due to his body fighting off so many allergens. Still not satisfied, I went back to the allergist during the next scheduled visit and discussed with her about how the bloodwork had come back abnormal, and she seemed to finally take an interest, that there was more to his case. She ordered her own set of specified bloodwork and low and behold, she found that he has  cholinergic-urticaria. I was somewhat relieved to know it had a name, and that their were other people with this condition, although I hate that he has it! At least now I have something to research and maybe they can begin to treat him with the proper medications now that they know what they are dealing with. It has only been about a week since we found out, and the Dr. says she is going to change up his medications, but for the most part, they are just adding one that is used to treat acid reflux and indigestion. She said for some reason it helps with this condition. It is not in my character to take anything lying down, so I not stop until I find what works to control or cure this very frustrating condition that my son has developed.  My son also get pseriosis on the back of his scalp periodically that we keep controlled with triamicilone cream. Wondered if their was a connection there? Also, when he was 18 months he was accidentally poisoned when we were moving into a new house and he found a bottle of adhesive remover in a cabinet before we did, and consumed some of it. He had a fever of 107 and aspiration pneumonia in both lungs from the incident. His eyes stayed dialated for a month. I also wondered if this could have a connection, maybe with defecting some sort of internal thermostat in his chemical makeup? I would like to hear from any Dr.s out there on their opinions. I always feared that nightmare incident would show back up with some hidden effect on him later down the road. It was the scariest thing that ever happened to me and I still cry just thinking about it.

[mike_de]

Like all have mentioned CU is horrible life changing disorder/disease, one that i sufferd with for YEARS, first for 4 years straight from 18-22 yrs old, and most recently from oct'09 to last week!!!

YES, ITS GONE!!!!

I saw a homeopathic doctor, which can be very expensive, especially because we dont pay for doctors in canada, at all, and trough a battery of tests it turns out that a simple VITAMINE B12 INJECTION in my right shoulder worked !!......

it took about 2-3 days before it fully vanished. i got the shot on monday may 17th, and by friday the 21st I was 100%

I feel your pain, i honestly was considering sucide, i couldn't laugh, cough, sneese, or anything without breaking out....

It's worth a try...Find the strength, get the shot, and hope it helps you too.
Sincerley,
Mike
Toronto, Canada.

[bamagirl1322]

I started having the CU hives when I moved from NC to AL at the age of 7. I am now 22. I have a break out of hives just about everyday, and sometimes multiple times a day. It usaully last 10 to 20 mins at a time, but if it gets really bad it can last for about an hour. When ever I get hot from anything like running, walking, working out, sex or just being in the sun I get hives. I also get them when I get nervous, excited, mad, scared, sad, and stressed. I get hives just thinking about getting hives. IT *****. Im really embaressed by this. I have people ask me "whats wrong with you?" And sometimes they are kinda mean about it. Also I dont just break out in some areas. I get them from head to toes. Depending on what Im doing they may be light but if Im in extreme heat(tanning in the sun, running) they can leave very large welps on my lower back and spread around. I can feel it coming on but theres nothing to do when they start. It feels like Im being bit by fire ants all over my body and my face will somtimes swell a little. I went to a doc when I was younger who told me that it was justa heat rash and would go away. I was given 4 different antihistimens, one being benedryl. I was so tired from the meds I never did anything to get hot, so I stoped taking them all. I also get head aches from the hives, so I not only get these hives almost everyday but I get headaches that last all day from just one breakout. I have never known anyone who had this. I have looked it up before, but found nothing about the kind of hives I have. its kinda nice to know what its called and that more people have it too. But that doesnt take the pain and embaressment out of having UC.

[MDHerron]

I have what was diagnosed as cholinergic urticaria, and have had it since 2002. My isn't exercised induced. I can just be simply out in the sun and will break out in hives. I can't have intercourse w/out a fan on me directly. When I get upset or irritated or nervous, I break out as well. So my life is limited to the utmost. I have found that taking a allergy med everyday is the only thing that helps. But I have been reduced to being able to only take Tekrals, which is equal to 4 Benadryls.

[PV2H]

I found the cure to Cholinergic Urticaria. Okay, well not a cure, but a solution. I began having Cholinergic Urticria around January 2008. I lived with it for about a year and a half taking doctor prescribed medications 10mg Loratadine and other various antihistamines. The Loratadine did the most for me prior to my recent discovery. Loratadine didn't make the rash itself go away, but did make it to where it wasn't necessarily tangible, itchy hives, but rather just red splotches. But I digress. I enlisted into the U.S. Army March 3rd of this year (2010) and was still having Cholinergic Urticaria breakouts when I was nervous, irritated, in the sun, etc. So I went to Basic Combat Training June 8th of this year and not once while I was there did I have a breakout. The whole time I had Drill Sergeants yelling at me (making me nervous), rigorous training (in the sun) as well as plenty of idiots getting my whole platoon in trouble (making me irritated).
I graduated from training on August 19th, and still have not had any problems with the Urticaria. As far as I'm concerned, the exposure to the triggers to this rash is what (hopefully) caused my immunity to this rash.

So my advice to you who still have this issue, is do one of three things:
A.) Join the Army (or any other branch of military for that matter)
B.) Give yourself constant exposure to your stimuli for approximately 3 months (which did it for me)
OR
C.) Get your doctor to prescribe you to some Loratadine and live with the fairly mild itching and the intangible red blotches that still appear with the usual triggers.
Hope this helps

[PV2H]

P.S. My doctor also sometimes substituted the Loratadine for Xyzal, not sure what amount, but it had the same effect.

[jerry42z]

I have had cholinergic uticaria for about 6 years in that time i usualy only get outbreaks 6 months out of the year (oct- march). VERRY WIERD, I KNOW. When I do get them I try to swim for my exercise. In the water I dont get breakouts.I hope this can help some of you cope with this horible disorder/ disease.                                            
                                                                                                                                                   good luck

[Lornalieberman]

I've had this for about ten years (dx age 25).  One day I was running and it felt like bees were stinging my thighs.  The itch was so painful I felt close to vomiting.  I thought I had poison ivy or was allergic to some chemical in my running pants.  Every time I tried to run, it came back.  I saw an allergist, he dx me with exercise induced urticaria (I also have exercise induced asthma which was dx about 3 years prior to the urticaria) and he gave me several different prescriptions for things I don't remember because I later discovered that generic, over the counter Claritin (Loratadine), taken the night before running (at least 8 hours before) keeps me from itching and it solves the asthma too.  I buy a pack of 30 every couple months, for about $5.  No inhalers, no prescriptions, no symptoms anymore.  Thank goodness.  Good luck everyone.

[franklinberger903]

Hello fellow sufferers.  So I have this dreaded exercise/heat induced cholinergic urticaria.  After much trial and error, I gave up wheat.  That cured it.  The allergist said I don't have a wheat allergy (and could also not diagnose my problem).  I'm not sure if it's the wheat or the glutin, but I gave up wheat and after about a week or so, it's gone.  And, I had it BAD.  I pray for you that your fix is as easy, b/c I know the struggle.  I miss bread and cookies and cake and cereal, and maybe I can add these in in small amounts in the future, but presently I'm too happy to risk it.  

I'm also hoping it goes away in the summer like it does for most people and I can eat wheat when the weather is hot, but like I said, I just don't want to risk it knowing what a (literal) pain in the, well you know......

Good Luck.

-Franklinberger

[jonny380]

I have had CU for over 5+ years. Recently, I started taking Cetirizine (Zyrtec) and Ranitidine (Zantac). Weird combo, but according research Zyrtec is a H1 antagonist and Zantac is a H2 antagonist. When implementing both, they work better than just one. This combo has helped me for 2 days. I went into the doctor and she said that this is the safest cure for now. Supposedly, there are other treatments according to the DR. I take this combo every morning and it has worked for 2 days, hopefully it works! In a month, I will be heading back to the DR and look for other treatments.

Try this out!!

[klenardson]

I have spent the past year being mis-diagnosed by allergists and dermatologists.  I am currently on Claratin, Zyrtec, Zantac, Xyal and then take benadryl for bad flair ups.  I get UC so bad I get swelling on my face and in my left eye - I don't know why.  I'm just exhausted with this disease.  I also have a mild allergy to my dogs and several things which are in almost every soap, shampoo and beauty product.  So on to pf UC - I have to throw out all of my beauty products because even cross-contamination with all of my other products.  I'm thinking of going tanning just to camoflouge my breakouts.

And if joining the Army actually works I would - but I'm 33.  This just *****!!

[jnascime]

I have had CU for 6 months now.  Unfortunately for me nothing has worked.  I feel bad complaining because I RARELY have the actual physical hives, (only with pressure, or sun), but I ALWAYS have the itch.  I mean the itch is constant and it's been all day every day for the past 6 months. I've tried Zyrtec, Claritin, Benadryl, Chlor-Trimeton, Zantac (in combo with one of the antihistamines), Hydroxyzine, Xyzal, Allegra, Doxepin, and Prednisone.  Predinisone, unfortunately was the only thing that ever took the itch completely away but I was only on two one-week treatments.  I was on a very low dose of doxepin (10mg), but from what i've read it seems those suffering from CU get relief from 100-150 mgs. I also read that it can take a few weeks to kick in.  Has anyone had experience with Doxepin?  If so, did it work for you?  Additionally, if any other CU sufferers out there have a medicine combo that worked for you, please share.  I'm borderline losing my mind!!

[Djpipsta]

I also have suffered from cu for 4 years now. This cobdition dramatically decrease my life quality. Somehow, once body core temperature certain threshold, mast cells and basophils begin to exocytose (secrete) histamine and other inflammatory factors into tissues underneath the skin. These cytokines (histamine etc) interact with
target receptor located on my cell types. Endothelial cells (cells made up capillarie wall) express H 1 receptors on their cell membranes. Histamine released by leukocytes will bind to these H 1 receptors, relaying specific instruction for these cell to response. One of the cells' responses is shrink in size. This leave gaps between endothelial cells made up blood vessels (cause capillaries to become porous) ,allowing blood to exudate into the surround tissues, which apear as a distinct tiny rounded lesions (hives) histamine and other inflammatory factors (prostagladins etc) causes others irritation sensations such as itchiness. Current knowledge suggest that cholinergic neural pathways may be involve with this condition. Sympathetic neurons release acetalcholines ( neural transmitters) which react with cholinergic receptors on target cells may somehow cause mast cells and other cells (mainly leukocyte) release inflammatory factors to the tissues, result in wide spread hives cover large area of the body.
There is NO cure for cu. This is simply because we currently do not understand detail mechanism of cu development. All we know is that mast cells dump lots of histamine into surrounding tissues correspond to raising in body core temperature and mental exertion. The prognosis of the disease is fairly comforting because cu tends to disappear by themselves. However, high percentage of cu sufferers tend to retain the condition for several years.
The key of controlling cu is to seek professional medical help (specialis in immulonoly or urticaria allergist) Exercise every morning may reduce severity of cu since the condition tend to exhibit refractory period after breakouts. This period may provide opportunity to live hive free through out the day. So be happy and think positive. One day we will be cured from this condition. In the mean time; hang tight and try to search for ways to minimize the attack. B vitamins might help. If antihistamine work for you then take it. Aside from rare cases of severe allergic reaction, antihistamines are pretty safe to take for long duration for individual with healthy liver and kidney. Combination of antihistamine (xyzal) and singuliar can be effective for sone cu patients. Try to stay from steroids. They can worsen cu condition in some patients. I hope this help. Gotta go. Cheer up and be in good spirit. This is surely not the end of the world :)

[Djpipsta]

I also have suffered from cu for 4 years now. This cobdition dramatically decrease my life quality. Somehow, once body core temperature certain threshold, mast cells and basophils begin to exocytose (secrete) histamine and other inflammatory factors into tissues underneath the skin. These cytokines (histamine etc) interact with
target receptor located on my cell types. Endothelial cells (cells made up capillarie wall) express H 1 receptors on their cell membranes. Histamine released by leukocytes will bind to these H 1 receptors, relaying specific instruction for these cell to response. One of the cells' responses is shrink in size. This leave gaps between endothelial cells made up blood vessels (cause capillaries to become porous) ,allowing blood to exudate into the surround tissues, which apear as a distinct tiny rounded lesions (hives) histamine and other inflammatory factors (prostagladins etc) causes others irritation sensations such as itchiness. Current knowledge suggest that cholinergic neural pathways may be involve with this condition. Sympathetic neurons release acetalcholines ( neural transmitters) which react with cholinergic receptors on target cells may somehow cause mast cells and other cells (mainly leukocyte) release inflammatory factors to the tissues, result in wide spread hives cover large area of the body.
There is NO cure for cu. This is simply because we currently do not understand detail mechanism of cu development. All we know is that mast cells dump lots of histamine into surrounding tissues correspond to raising in body core temperature and mental exertion. The prognosis of the disease is fairly comforting because cu tends to disappear by themselves. However, high percentage of cu sufferers tend to retain the condition for several years.
The key of controlling cu is to seek professional medical help (specialis in immulonoly or urticaria allergist) Exercise every morning may reduce severity of cu since the condition tend to exhibit refractory period after breakouts. This period may provide opportunity to live hive free through out the day. So be happy and think positive. One day we will be cured from this condition. In the mean time; hang tight and try to search for ways to minimize the attack. B vitamins might help. If antihistamine work for you then take it. Aside from rare cases of severe allergic reaction, antihistamines are pretty safe to take for long duration for individual with healthy liver and kidney. Combination of antihistamine (xyzal) and singuliar can be effective for sone cu patients. Try to stay from steroids. They can worsen cu condition in some patients. I hope this help. Gotta go. Cheer up and be in good spirit. This is surely not the end of the world :)

[Conquerer4]

Thank you, thank you, thank you to all of you! I thought it was just me. I started experiencing Cholinergic urticaria about 4 yrs ago. I only get it bad when I run. I wasn't much of a runner in the past, but the last couple of years I decided to try to run more. Oddly enough I don't experience it as much on treadmill, as opposed to running on the street.

Based on a lot of the comments and my own experience, there seems to be a correlation between asthma/shortness of breath. I too was told by my doctor a few years ago that I had exercise induced asthma.

I'm still experimenting, but Zyrtec seems to help. Additionally, I've been trying breathing exercises and I feel like the better my breathing gets while running the less I itch. I also think the army guy may be on to something. I refuse to quit! I will fight through this and I will win!

Thank you all again! I really thought I was going crazy all by myself. I wish you all the best and I hope it gets better for you all.

[cyrunic]

I had my first attack at age 6 and am now 48 yrs old, I take Benadryl Acrivastine 8mg which seems to work well, but also take Ranitidine for an unrelated condition. Until reading this site, I was unaware that the 2 worked in conjunction.
I have suffered from depression and anxiety which seems to exacerbate the CU, tried meditation, relaxation and just about everything else. I also have Psoriasis, eczema and asthma, which are all related to CU.
I suppose I'm just so glad to come across a site with other sufferers, thank you all for your input, as perhaps we can come up with a way to manage this debilitating condition, keep posting!

[krowiak1]

I also have cu! I not only get it from  exercise, but from as little as vacuuming an area rug, or clorox in the laundry. If I am around chemicals or my thermostat is on the rise from heat, or the slightest bit of running, my eyes will start to sell and then I am in trouble. Have not heard many of you write about this stage of cu. Anyone else have the swollen in the face or eyes? I have learned to control m symptoms, so that I do not get to that point, unless I am where there are chemicals and I ingest them. My Doctor has been doing alot of research on this and he thinks he may have found a shot that it used for asthma, It is called Xolair. This is used to bring the IGE levels down, which is what is elevated in CU. Unfortunately, I do not have asthma so the insurance company will not allow it, stating that it would be experimental. My Doctor believes this will help they symptoms of cu.So for those of you that have CU, maybe you should have blood test done to see if your IGE levels are elevated. Maybe we can start a rally on the cure for CU.

[anniewhits]

Hi Everyone,
My first post but have been watching and learning. I will put my "CU timeline in point form because it became so complex that I confuse myself…… I am 53yrs old and female – Australia.

1. Mum said I had hives as a child but it was a common thing back then.
2. I had an outbreak of pressure urticaria after a Chinese meal in the mid 80's and put it down to MSG or something – prednisone for a week and it went.
3. My gorgeous, beautiful, kind son died in 2006 after a 5 yr battle to live –
high stress, for a long time – he got a blood clot I his lungs and died waiting on the transplant list – very very stressful also dry runs to hospital ,
heart/lungs not suitable etc – and surgeries to keep him alive – also high debt nearly a million spent on medications not under PBS so massive debt here still. –therefore - depression and grief ( 2 different things ) are issues. I was 48.
4. Urticaria breakout in early 2007 – lots of stress after Tim died, moved
state, relationship worries – you can only imagine. I was treated with
Prednisone and Zyrtec and Zantac ( ranitidine) 6 mths settled down.
5. Started bowel issues – diarrhoea, cramps etc 2009 had a colonoscopy and Gastroenterologist had a feeling about it and did 6 biopsies along my bowel. Came back positive for  lymphocytic Colitis – cause is suspected auto immune still not much known about it as it is often missed. Says is rare but believes it is only rare because Dr's do not biopsy for it.
6. January this year massive break out and still have it. STILL HAVE IT! Been playing around with meds and everything seems to give me problems.
7. Tried Cyclosporin and had kidney failure – so that is a no go.
8. Prednisone I only take as a short term thing for a massive flare – due to
side effects.
9. Liver is not user friendly and I retain fluid and have familial high
cholesterol. Had to stop cholesterol meds due to liver function. Good grief!
10. after join a couple sites i have now become aware that a lot of women that had endometriosis have urticaria of different forms but auto immune - i had endo.
11 - i am a blusher and get flushed, if i cry, get anxious , ever so slightly - even if i laugh when i am out  got and go bright red - then you can be sure some hives will come up. i hate this - i embarrassed and ir gets worse (duh)


Current meds - backed of by science you need both a H1 and a H2 receptor.

Morning Entocorte 3mg for bowel – steroid that does not get absorbed so much into the blood but goes through to the bowel.
1 x Zytrec (Cetirizine) (was on 2) - Hi histamine receptor
1 x Zantac ( ant acid ./ reflux ) Hi histamine receptor
1 x Xanax ( anxiety, agitation, restless legs)

Midday  was on 2 Zyrtec now cut out due to zombiness

Eve 2 x doxepin ( 10 mg) - wish i could get down to one, it makes me fat i think as does zyrtec.
1 x Zyrtec  ( was on 2)
1 zantac
2 x Xanax ( anxiety, sleep, restless legs) also trying to cut back was put on this when we were waiting for transplant. :(

This week – Dr ( Specialist Dermatologist ) said drop Zyrtec pick up Telfast
(Fexofenadine) and started me on Singulair (10mg) once a day- that was Monday –
Tuesday woke up hysterically itchy all over, some hives, some broken & weeping serum. So hit myself with some prednisone to calm things down went back to my usual regime and will just add Sungulair after the weekend and see. As 2 things were changed I don't know what flared me up.

I am itchy most of the time all over, where ever I touch or light rub brings up a wheel, hive, rash – Where ever my clothes touch I have red welts and feel itchy and hot. E.G undies, bra, waistline if wearing a skirt, shoes, necklace. I also get really scarlet red and blotchy if I laugh or cry around my chest and up my neck or anything other than quietly sitting and not at emotional- That is normal to get a slight rash around their neck / chest, for some woman but I get it extremely bad.

Diagnosed after allergy tests and heaps of stuff with Auto Immune Chronic
Dermographic Urticaria.

Honestly I am not coping with this at all. Due to the loss of my son I need to walk, get out to help with depression. not be bombed out on anti histamines.

Prednisone makes me much more emotional- I just can't take much more. – and this is the short version – sorry. I feel like I cannot win  -
for the people that get urticaria where skin rubs skin during exercise you can get a stop chaffing power from the pharmacy that helps - as it lowers the friction - i have also used cornflour in Australia rub before you walk/run and it may be called corn starch elsewhere - it s the finest powder you can i used it if my babies got heat rash and nappy ? diaper rash back in the 70's and 80's.

Love
Annie

[dantheman841]

My son suffered a slight rash 3 yrs ago which was so bad we took him to a&e....they said he was allergic to asprin....Fine, they sorted it and it went in 3 days.

Since then......

A yr and half later, he was away and living on his own and sent me pics of himself looking like elephant man.....was in and out of hospital for 2 weeks on and off till it died down and docs making sure it never went to his throat.

Since then, my son 21, was a model and maitre de has turned into a recluse and very hard to live with as his moods have changed no end.

He is depressed and i cannot blame him.

Getting work is NOT a problem for him as he is sweet/kind and good at his job BUT once this flares up, no-one, including employers which used to love him, no longer want to know and its sad.

He has been fine for past ten days After HAVING to give up latest job where they adored him and loved his work but because of this he is out again!!!

Doctors have no idea what causes this Extreme form but i just want a cause and an end to his suffering, he is a young lad who should be enjoying life.

[dantheman841]

My son suffered a slight rash 3 yrs ago which was so bad we took him to a&e....they said he was allergic to asprin....Fine, they sorted it and it went in 3 days.

Since then......

A yr and half later, he was away and living on his own and sent me pics of himself looking like elephant man.....was in and out of hospital for 2 weeks on and off till it died down and docs making sure it never went to his throat.

Since then, my son 21, was a model and maitre de has turned into a recluse and very hard to live with as his moods have changed no end.

He is depressed and i cannot blame him.

Getting work is NOT a problem for him as he is sweet/kind and good at his job BUT once this flares up, no-one, including employers which used to love him, no longer want to know and its sad.

He has been fine for past ten days After HAVING to give up latest job where they adored him and loved his work but because of this he is out again!!!

Doctors have no idea what causes this Extreme form but i just want a cause and an end to his suffering, he is a young lad who should be enjoying life.

[dantheman841]

My son suffered a slight rash 3 yrs ago which was so bad we took him to a&e....they said he was allergic to asprin....Fine, they sorted it and it went in 3 days.

Since then......

A yr and half later, he was away and living on his own and sent me pics of himself looking like elephant man.....was in and out of hospital for 2 weeks on and off till it died down and docs making sure it never went to his throat.

Since then, my son 21, was a model and maitre de has turned into a recluse and very hard to live with as his moods have changed no end.

He is depressed and i cannot blame him.

Getting work is NOT a problem for him as he is sweet/kind and good at his job BUT once this flares up, no-one, including employers which used to love him, no longer want to know and its sad.

He has been fine for past ten days After HAVING to give up latest job where they adored him and loved his work but because of this he is out again!!!

Doctors have no idea what causes this Extreme form but i just want a cause and an end to his suffering, he is a young lad who should be enjoying life.

[dantheman841]

hey,

from scotland....

theres NOTHING to do with heat that causes my sons condition at all..

please read below and mail me as i don't know what i can do to help my son.

ty.

My son suffered a slight rash 3 yrs ago which was so bad we took him to a&e....they said he was allergic to asprin....Fine, they sorted it and it went in 3 days.

Since then......

A yr and half later, he was away and living on his own and sent me pics of himself looking like elephant man.....was in and out of hospital for 2 weeks on and off till it died down and docs making sure it never went to his throat.

Since then, my son 21, was a model and maitre de has turned into a recluse and very hard to live with as his moods have changed no end.

He is depressed and i cannot blame him.

Getting work is NOT a problem for him as he is sweet/kind and good at his job BUT once this flares up, no-one, including employers which used to love him, no longer want to know and its sad.

He has been fine for past ten days After HAVING to give up latest job where they adored him and loved his work but because of this he is out again!!!

Doctors have no idea what causes this Extreme form but i just want a cause and an end to his suffering, he is a young lad who should be enjoying life.

[dantheman841]

MY SONS CONDITION IS NOOOOOTHING TO DO WITH HEAT, NOUT, NUFFING, ZERO!!!

[dantheman841]

MAY i say:

My son doesnt just have this SILLY DAFT RASH u go on about BUT Certain parts of his body swell up so bad, at times, he cannot walk....His face flares up with Lumps/Bumps soooo bad, we Cannot recognise him.