Allergies Forum - Cholinergic Urticaria (heat Hives)


Cholinergic Urticaria (heat Hives)

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Azores

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Joined: 27 Apr 2008
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Posted: 04-28-08 00:06am


Hi everyone, Im from Azores (a group of 9 islands that belongs to Portugal). My main language is portuguese so sorry my english. I have Cholinergic Urticaria since 18 years old. Now Im almost 24. With 20 years old I started doing exercise, mountain bike, and the Cholinergic Urticaria after a couple mounths was gone! With 23 years old I stoped doing mountain bike because I was too busy with my university studies and now a couple mounths after the problem is back, but now it is very worst and Im trying to do mountain bike again but its so hard... the Cholinergic Urticaria is more violent now. Ill try to do exercise (ride my bike) at morning because its more cold... lets see if it works. My doctor said that to keep doing exercise it works because the body generates tolerance... thats why in the past I get the cure! it is like that case of that guy that was bitten by a snake but the snake injected just a little of poison and he after a while discovered that had generate tolerance to another bite... do you know what I mean? Also to ride the bike is refreshing! But atention, you must train in the anaerobic threshold! To push too hard is not good... go see things about anaerobic threshold and you will understand what I mean! Stress is also a big problem to all people with this problem... yoga helps too!

Ash2k86

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Joined: 24 Apr 2008
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Posted: 04-28-08 01:13am


I am a 21 year old female. I haven't tried any homeopathic meds yet. I'm now trying Clemastine Fumarate (Tavist) which is over the counter. We'll see if that works. I remember sweating a lot too in high school when i used to exercise. I would also starting scratching my forarms because they would itch all the time. I'm still trying to figure this out.

brockham

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Joined: 04 May 2008
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Hello all Posted: 05-04-08 11:18am


Heres my story, its pretty similiar to everyone elses, apart from two distinct areas Whenever i get hot quickly, or my heart rate increases, i get lots of tiny red dots (not usually raised) all over my body, especially arms! It has been happening since around december this year. But this is where my first difference comes in, i do get the initial tingling, but when the hives come, they dont itch! Will this come in time i wonder (only been noticing it since March)? And my second difference is.... I see that alot of people on here complain that they dont sweat at all but I have something called hyperhidrosis, which means that i sweat extreme amounts for no reason! Like just sitting down watching TV i will get large sweat patches! So to prevent this is put on something called perspireX which makes my sweating less, but still more than the the average person! Ive started taking loratadine once a day, which has made it a bit better,.. Yet i still get the spotty hives every other day. I have an appointment with my GP on wednesday and im not getting my hopes up as i imagine i need to go to a skin specialist! This condition is absolutely horrible! I havent excercised in like the past month and i had sex for the first time since ive had CU last weekend, and i got hives all overr my chest and stomach... We did get on really well but havent spoken since the sex which i imagine is because of my hives ( Destroying my self confidence! ) ........ or it could be because i was bad in bed. ha. I would rather that to be honest! Goood luck!

yankeesfan01

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Joined: 06 May 2008
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Posted: 05-06-08 23:08pm


So i've had this since about last November, seemingly ever since I stopped exercising due to an increased amount of studying=less time at college. Haven't really tried much except Zyrtec, which helped reduced the severity of my attacks a bit. This has been quite frustrating for me, as I enjoyed an active lifestlye. I recently went backpacking and quickly broke out not long into the hike. I'm determined to get through this though...so I'm going to try and force myself to sweat by biking daily. I'll let you know how it goes. Hopefully this will help me build a tolerance so I can get back to a normal life. Thanks for all the encouragement here, its good to know I'm not alone in this. Good luck to all.

anatta

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Re: re: anatta
Posted: 05-09-08 20:36pm

Jon Law,

That is certainly a helpful bit of information. Thanks for the post!

-B

Jon Law wrote:

Hey Anatta,
I think if you read back along through some of the posts, you'll see that a number of people have tried exercising and purposefully bringing on the hives with hot showers as a means of depleting histamine stores (myself included).
You're correct about the histamines etc. hence all the anti-histamines that a lot of us have tried. But there's another step before the release of histamine which can be tackled. Histamine is released from mast cells when IgE's bind to the mast cells. I put up a link to a paper a few posts back where some doctors showed that if you get rid of the high levels of IgE (which their patient exhibited and which they believe most CU sufferers may have), then you don't have to worry about dealing with the excessive amount of histamine. It's more effective and less painful!!
They used a drug called Omalizumab (marketed as XOLAIR) which is injected every 2-4 weeks. This binds to the IgE which prevents the IgE from binding to the mast cells, which prevents the release of histamine. They have successfully demonstrated this treatment and a patient who had CU for 5 years is now attack free for the last 22 weeks. This includes provocation from hot baths and exercise.
I've had blood tests taken last week and sent away to measure IgE levels. I will have them back next week and will let you know whether they are abnormally high or not.
The problem with XOLAIR is it is very expensive if not covered by insurance. It is traditionally used to treat allergic asthmatics.

Jon Law

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IgE levels Posted: 05-13-08 05:58am


As expected, my IgE levels were very high. The reference is 87 IU/ml and my results came back around 152 IU/ml with anything over 100 IU/ml seen as elevated. Next step is to find a doctor who may prescribe the Xolair. IgE is typically high in peoples blood levels due to some type of allergy so perhaps some people may have some success with allergy testing etc. I'm not sure. Best of luck everyone anyway.

GJG

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Joined: 04 Jan 2008
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Check out this website Posted: 05-13-08 21:53pm


I'm pretty sure this website will answer a lot of our questions. Hope it helps... http://www.ur ticaria.thunderworksinc.com/index.htm

Jon Law

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Immunologist Posted: 05-14-08 06:55am


Okay folks, Immunologists are the people we should be seeing. Not neurologists, endocrinologists, dermatologists etc. Hopefully others won't have to go through the same process of elimination like I did.

Duper

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Location: New york

Posted: 05-14-08 19:24pm


Thanks for the updates, Jon. Good luck and make sure to tell us how things turn out.

Jon Law

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re: Duper Posted: 05-15-08 05:32am


I'm waiting on a appointment to see the immunologist at the moment. The doctor who referred me to him was also really knowledgeable about the condition and all the drugs involved. He said though that he wouldn't have the expertise to prescribe Xolair so that's why I'm being referred to the immunologist. The doctor did prescribe another drug in the meantime which I wasn't on before called singulair. I think it's also normally used for asthmatics but it is known as a mast cell stabiliser. I have only taken it for one day so far so I can't comment on it's effectiveness but maybe it would work well for some other people out there. It's a different approach than the anti-histamine approach (which I don't like in the first place because it's not really addressing the problem). Best of luck anyway guys.

Akoni

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Joined: 05 Dec 2007
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Posted: 05-18-08 18:45pm


Hey Jon, thanks for bringing this to my attention. This Xolair seems promising. I've looked around for some more info on it but im only getting old data. Do you think you can find out on your next visit whether one would have to take Xolair every 2-4 weeks for the rest of ones life or whether one would take it for a treatment period (say a few months) and have it clear up and be done with it? Thanks much for your info so far.

nds88

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Joined: 22 Apr 2007
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Posted: 05-19-08 00:39am

Akoni wrote:

Hey Jon, thanks for bringing this to my attention. This Xolair seems promising. I've looked around for some more info on it but im only getting old data. Do you think you can find out on your next visit whether one would have to take Xolair every 2-4 weeks for the rest of ones life or whether one would take it for a treatment period (say a few months) and have it clear up and be done with it?

Thanks much for your info so far.

I doubt they will ever find a cure. The reason being money. Why would someone design a drug that needs to be taken for a period of time (say a few months) then have them completly cured of CU, when they can design a drug that you must take every 2-4 weeks for the rest of your life to relive the symptoms. It makes more economic sense to have a customer for life rather than a customer for a few months.

On a side note, it finally got hot in my city. Friday was the first hot day of the year and I spent it outside mowing the lawn. I got some tingles, not too bad, for about 15 minutes then it went away after I broke out into a sweat. Yesterday (saturday) was even hotter and I spent most of the day outside doing some work...just had like a minute of itichiness in the morning. Today was GREAT, no breakouts or CU symptoms at all!!! Even though its hot and I'm not sweating all day, my body temperature is higher than usual. So after the first hot day I sweat out all the histamines. Since my body is hot throughout the whole day it is constanly sending signals to release histamines, but my histamine reserve is now depleated and my body is releasing only small amounts of histamines through out the day that are not enough to cause an outbreak or itching, but it is also not allowing the histamine reserve to build up and save it for an outbreak.

This is why I love summer...I only wish I lived in a city that was hot year round. Where is everyone else from and are they experience the relief of summer as I am?

GJG

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Posted: 05-19-08 01:42am


It is completely the opposite for me. Summer is the worst time for me because I even break out in my sleep. I live in Los Angeles and it's been very hot over here. I exercise every morning but i get no sign of relief because i cant break a sweat for some reason, I just get very red. I do 4 sets of 45 push-ups and i run a mile every day in the park. The only good news from my exercise is that I'm getting back into shape.. I don't mind waking up at 6:00 a.m. every day to work out but i just hate the thought of breaking out during my exercise. I'm not going to stop this routine until i get some kind of relief. I also changed my sleeping routine. I use to go to sleep around 1:00 a.m. and 2:00 a.m. because i get a lot of homework for home studies and college classes. For about a month now, i usually go to sleep around 9:00 p.m. and 10:00 p.m. on weekdays and 11:00 p.m. on weekends. Hopefully this will make some kind of difference. The funny thing is that I've been going to acupuncture twice a week for about 4 weeks now. They also gave me this brownish horrible tea to drink 3 times a day.. I guess it helps a little but it's just not enough, at least for me. I was thinking about Xolair but it's pretty expensive. Well, I'm going to keep this routine up and see what happens. Best of Luck..

Jon Law

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re: akoni
Posted: 05-19-08 05:38am

Akoni wrote:

I'm not sure akoni. I do think though that CU may only effect younger men so maybe it'll naturally go on it's own someday and you won't need the drugs anymore. I was wondering the same about it myself but because it's used for allergic astmatics and there hasn't been much published on CU sufferers using it, I haven't seen that information. I know in the paper that I've read, the dosage was reduced after a number of weeks from the initial amount.
Xolair is ridiculously expensive though and I don't think anyone could afford it if it wasn't covered by insurance. I don't know if this is the answer though. It's just something to ask an immunologist about (GPs may not be comfortable prescribing it).

nds88

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Posted: 05-19-08 12:25pm

GJG wrote:

It is completely the opposite for me. Summer is the worst time for me because I even break out in my sleep. I live in Los Angeles and it's been very hot over here. I exercise every morning but i get no sign of relief because i cant break a sweat for some reason, I just get very red. I do 4 sets of 45 push-ups and i run a mile every day in the park. The only good news from my exercise is that I'm getting back into shape.. I don't mind waking up at 6:00 a.m. every day to work out but i just hate the thought of breaking out during my exercise. I'm not going to stop this routine until i get some kind of relief.

I also changed my sleeping routine. I use to go to sleep around 1:00 a.m. and 2:00 a.m. because i get a lot of homework for home studies and college classes. For about a month now, i usually go to sleep around 9:00 p.m. and 10:00 p.m. on weekdays and 11:00 p.m. on weekends. Hopefully this will make some kind of difference.

The funny thing is that I've been going to acupuncture twice a week for about 4 weeks now. They also gave me this brownish horrible tea to drink 3 times a day.. I guess it helps a little but it's just not enough, at least for me. I was thinking about Xolair but it's pretty expensive. Well, I'm going to keep this routine up and see what happens.

Best of Luck..

How long have you had CU? How long have you been doing this exercise routine?

When I first learned of the sweat method it took about 3 trys before I could break into a sweat. This was becuase I would break out in a horrible itch and not be able to continue through with the exercise. The fourth time I was able to bear through the itch and after about 10 minutes it was gone and I was sweating. Everytime got easier and easier. I think the trick is to bear through the itching. If you exercise to heat up, break out, then quit- you probably won't get any relief even if you did this everyday for a year. You must bear through it so your histamine reserve will be depleted.

It takes anywhere from 5-15 minutes of itching for me when I use the sweat method, but I guess depending on the person may take more or less time. I think running a mile in not enough because a mile is ran in about 7-8 mins. I do 10-12 laps (2.5-3 miles) and take about 30 minutes to do this. Try listening to music when you run as well, it helps distract you. I know its tough but try to bear through it.

qtmed

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Try this for hives!! Posted: 05-20-08 01:02am


I just posted my similar condition a few days ago. I have the same thing, but along with the rash..if I dont "chill out" it turns into an allergic reaction. It started the same as your condition, but over a 10 year span, I seem to be getting more sensative to it. I've seen so many Dr's and tried sooo many medicines. The only one that seems to make me less sensative is Allegra 180 twice a day. Its generic name..Fexofenadine. Hydroxazine works a little..but youre right, the side effects plus the histamine is unbearable. Good luck and let me know what you find!! qtmed

qtmed

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Nice 2 c some ppl who understand!! Posted: 05-20-08 01:19am


I have had this condition for over 10 years and it progressivley gets worse. It starts as a heat rash over my neck,arms,trunk, and upper thighs. I can get this while sitting,standing, walking short distances, heat,humidity,cold,pressure,being excited, nervous, or stress. It is not brought on by any type of food. I do not have asthma symptoms. If I begin to notice the rash, I must sit down or remove myself from the environment causing it. If I can not, I begin to get hives in the same areas as the rash. My eyes, lips, ears, and throat begin to swell. Recently, after the birth of my son (by C-section), I have been getting severe cramps in my lower abdomen after the swelling has gone down on my face and throat. It is so severe I cannot stand, or sit. I get nausiated from the pain. I can only describe it as a very strong pressure. It feels like my insides are about to come out..to put it bluntly. Currently, I am on Allegra 180 bid, Singular, epi-pen as needed, hydroxadine to take as the symptoms occur. I am 27 and have gained over 100lbs over the years because my activity is limited. I need some answers so I can live a normal life..Please HELP. .....Ive found that the Allegra 180(Fexofenadine) has dramitically improved my sensativity.

GJG

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re:nds88 Posted: 05-20-08 02:22am


I've been suffering from CU for about 2 yrs 6 months now. I started my exersise routine about 3 weeks ago but no luck yet. I'm going to try running 2 miles now to see if I break a sweat. If that doesn't work, I'm just going to keep running until I faint I guess lol.. Listening to music while running helps because it makes me forget about the pain. I just start listnening to A7X and it gets me pumped lol.. I've been drinking nothing but water and cranberry juice for about 2 months now. I don't eat meat either, just fish and rice lol. I don't eat fruits though, just vegetables. I drink at least 6 Fiji water bottles everyday. I noticed that my face has been clearing up ever since i started this routine. I'm not saying I like it this routine but, it does help a lot trust me.. It's been a big sacrafice for me because I love sugary foods and junk food and stuff like that lol, but I rather make this sacrafice then live with CU.

qtmed

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Curious!! Posted: 05-20-08 17:07pm


Has anyone else had an elevated Serontonin level in addition or cause of their CU?? I've had every other test done that eliminated my high levels. I've read that Serontonin levels can go if you have damage to blood vessels. Im guessing that CU might have played a role in this. Im curious to see if anyone else has seen a change in other hormones or levels in their blood results?

GJG

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1 month of exercise.. Posted: 06-01-08 17:47pm


Just letting everybody know that my exercise routine worked. I started sweating just yesterday and my hives disappeared for the entire day. I was really happy when my annoying hives went away. I knew that it was only going to be gone for 1 day so what i did was workout and sweat in the morning and in the night. I woke up this morning to go exercise and once i started running, i didn't get any itch or pain or any sign of hives.. I think i didn't get the hives anymore because i also started exercising and sweating in the night. I'm not planning to stop this routine any time soon. I just won't dare stop exercising lol. It feels so good going outside once again in the hot sun. I'm telling you guys, this routine was totally worth the sacrifice. I'm not going to lie, it wasn't easy at all but i managed to do it the hard way. Doing it the hard way (exercising) is the only way you are going to get guaranteed results, even if it takes a month or more but in the end, you'll be really, Really, REALLY happy and relieved, just like I am today. Good Luck..