Xyzal Antihistamine for Cholinergic Urticaria Chronic Hives
Post by: Hevnlyst on March 13, 2009, 11:44:01 PM
I remember seeing this site many months back, but I dont remember a forum.
As a matter of fact I only remember about 3 posts, so I’m guessing it was pretty new at the time.
But anyway, I stumbled upon it because of just general things I searched on google, the one that worked being “itchy when hot”
I’ve gone through all the stages, the wtf is wrong with me stage, the oh god, something is seriously wrong stage, the go to the doctor and get diagnosed stage.
I’ve had Cholinergic Urticaria for about a 2 years now, the first time I ever felt it was my junior year in high school, playing tennis indoors. As soon as we got outside in the spring, I had no problems.
It didn’t affect me until the folllowing winter, which is when I noticed it happening when I attempted to do anything that was strenuous or labor intensive.
At first my parents though I was using it as an excuse to not play sports, but they gave me a break since I had played sports in every season since 7th grade, and it was my senior year. But until the next spring, I told my gym teachers they could just fail me if they wanted to, because I couldn’t legitimately participate. It was double gym, and they ended up giving me an A anyway.
During the upcoming spring, it didn’t go away. I went to a doctor, got put on Xyzal, which btw, I don’t waste my time taking anymore because it doesn’t have any effect on me.
Since then, I’ve educated myself, and adjusted to living with it. I don’t play any sports anymore, and although my father thinks I’m lying, my mom knows it is real, and that I’m not overreacting when I freak out and need to cool off. I attended my first semester of 4 year school,only to fail out because whenever I entered a class (I live in PA), from october-december, the massive temperature change would send me over the edge, and I would tell the professor I needed to go outside for medical reasons. And then my attempts to re-enter the classroom would make a large crowd of people stare at me, so I would instantly feel nervous and stressed, and need the leave again. AND, the classrooms were always warm as hell
Personally, I have noticed that my temperature raises a lot over stress, more so than hot food or showers.
And also, the longer I’ve had it, the more prone I have become to psychological cues.
Like, If I get asked to carry something heavy up the stairs, I anticipate the heat and hives, so I become easier to aggravate and break out when I actually do heat up.
But after recognizing my triggers, I live a boring, uneventful, miserable life. I am commuting to a community college now every day, and have had just as much trouble there, so I tend to show up as early as possible to adjust to the heat.
Outside of school, I really only play World of Warcraft, and with all the idle time I have because of school, I probably play way too much.
ALSO. I have already read around quite a bit, and have noticed the dust mite allergy discussion. I’ve had a terrible allergy to them since I was about 9 years old, and even though I have allergy covers on my mattress, pillow, and my mother has used a special allergy spray for many years now, I still have symptoms. While I was at the university, I did have substantially less problems when I was relaxed and in my room, where there was a tile floor, and the only cloth was my bedding and clothes. So who knows about it.
I figure I should conclude this book of a post, but I am excited that there is someplace I can discuss possible treatments and stories with other people that live with this bullshit on a daily basis.
OH, and I can’t wait to get outside and sweat through this crap, because as of last summer, I also noticed that after I worked through the hives on a hot summer day, I had almost no problems for the next 2 months.
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Title: Re: hello
Post by: HivesGuy on March 14, 2009, 07:05:06 PM
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Hello Hevnlyst,
Excellent post & welcome to the forum!
Yes, the site did look much different a few months back lol. I did add a new blog design, and the forum has been here for a few months as well. It continues to grow with more Cholinergic Urticaria people, which leads me to believe quite a few people have this, and hopefully, we will figure this out and be able to share some information over time.
I can definitely relate with your stages (the oh God stage), etc. That is a pretty funny way to put it, and at the same time quite accurate. I think we all go through several phases trying to figure out what is happening, and this is probably true for many other diseases as well.
I am glad your teachers still passed you with an A, and I can definitely understand your frustrations about not being able to do everything you once did. I also can relate to your school problems. I agree with you 100%, at schools they always seem to have it super HOT during the winter months, which makes Cholinergic Urticaria go crazy from the temperature change. I used to do the same kind of tricks you did (getting to class early to get through the breakouts, etc.).
I am sorry about your dad being suspicious and thinking you are being dishonest. At least your mom understands, and in a lot of ways I can relate there too. I think many people in my family even today don’t really realize the effect this condition has on me. But just know we understand what you feel. You are always welcome to show your dad this website & forum to help convince him the negative and destructive effect this has on people.
It looks like nothing is happening to us on the outside, since the skin symptoms are so light (or even invisible). Yet on the inside we are feeling such an INTENSE feeling of itching/prickling, etc. It is the worst torture I have ever went through.
I agree about the “psychological” thing that goes along with Cholinergic Urticaria after having it a while. I find myself thinking of things all the time like, “Will that make me itch if I do that?” I also secretly hope every place I go into will be cool enough to prevent an attack.
I can also relate to having a “boring” life. Cholinergic Urticaria definitely makes us makes most of us alter our lifestyle. I know I certainly can’t be as outgoing as I used to be. However, many on this forum are determined to not let this keep them down, and I agree. That is one thing I hope for the future is to get Cholinergic Urticaria under control so I can do the things I used to do. As of right now, it does keep me from doing most things I enjoy (even working out).
That is very interesting that you know of a high dust mite allergy. It seems that is a common link among those with Cholinergic Urticaria that have had an allergy test.
That is also interesting that the sunlight seemed to help you as well. I am hoping & praying to God that this is the answer, and that this summer I can enjoy some relief and feel like a normal human again.
I just want to thank you again for the excellent post. I am glad you came back to the site, and I can relate to everything you said. Please let us know if anything changes, if you find new info, etc.
Thanks again!
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Title: Xyzal Antihistamine for Cholinergic Urticaria Chronic Hives
Post by: Honkymagoo on April 23, 2009, 09:29:12 PM
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I was in to see my doctor recently for a physical and told him that my current medications (hydroxizine and clarinex) weren’t doing anything for my hives. He gave me something called Xyzal to try out. The analogy he gave me was: Xyzal is to Zyrtec as Clarinex is to Clariten. Apparently it’s a souped up version of Zyrtec. I gave it a try at work the other day when I started to get warm and left my sweatshirt on to see if I broke out. Got some tingles but no rash but also no sweat. It also made me a bit drowsy so I’m not sure I’d do well on them long term.
Anyone tried these?
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Title: Re: Xyzal
Post by: HivesGuy on April 24, 2009, 08:54:31 AM
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Nope, but it sounds interesting. I have only recently tried zyrtec, which does work a little better than other anti-histamines I have tried in the past (claritin, hydroxyzine, benadryl). But it doesn’t stop the hives 100%. It only helps maybe 20% or so. But oh well.
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Title: Re: Xyzal
Post by: bumps on April 30, 2009, 06:46:18 AM
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I take 2 xyzal an hour before working out and it seems to help a little. My breakouts haven’t been as bad.
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Title: Re: Xyzal
Post by: HivesGuy on April 30, 2009, 03:08:19 PM
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That’s great if it helps some. I guess we will take what we can get.
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Title: chronic cholinergic urticaria
Post by: mkd134 on May 22, 2009, 12:27:29 PM
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First I didn’t realize how many people have cholinergic urticaria. I thought I was one of the few for the longest time. I had my first outbreak I guess you can call it when I was 15. I am not 26 heading to 27 with no sign of relief. The only constant is that they get worst from year to year. I have been on again off again with the meds. I hate the way the make me feel and in most cases don’t even let me function. Its like everytime I go to the doctor its a new pill. I have tried changing everything in my life even relocated myself to a place where its generally cold. Doesn’t help because even when shoveling snow I break out.
Was curious if everyone that has Cholinergic Urticaria is able to sweat or not? I know I havent been able to for the last 11 years. I did have about two weeks when I went on xyzal that I did sweat ALOT and I was soo happy I thouhgt I was finally getting through it but not so much beecause when they come back they come back with a vengence. I also have had even worst outbreaks when I am anxious or if I have a nightmare forget it, try to get to the shower as fast as possible and just jump in with cold water.
I was wondering if anyone knows of any support groups that meet in the northeast area. I know for me like many of you life for the most part comes to a halt especially in the summer. My doctor wants me to go on an IGE treatment … curious if anyone else has gone down that road. Be great just to talk to other people that have this to the most extreme cases like myself.
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Title: Re: chronic cholinergic urticaria
Post by: HivesGuy on May 22, 2009, 03:36:57 PM
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Hello MKD134,
Great post & welcome to the forum!
Yes, I agree that it does seem like quite a few people get this condition. At first, I really thought I was alone, but I suspect there are tons of people who have this but never really talk about it and so forth.
I am sorry that you have had to deal with this now for over 10 years, and that it is even getting worse. Most all of us on here cannot sweat, at least, not easily. I can only sweat on extremely muggy days, and even then it is very difficult. So sweat is always a nice feeling, since sweat means I am not having hives.
I too used to jump in the shower with cold water, but a positive thing for me is that finally showers don’t really cause Cholinergic Urticaria reactions for me. I keep the water warm enough to be comfortable, but not too hot to cause a reaction.
I don’t live in the northeast area, but perhaps someone on here does. If no one lives near you, but you really want to meet others, you may want to contact your local dermatologists & see if you can leave your information for them to give to other Cholinergic Urticaria people or something.
Personally, I prefer the online thing. That way, I don’t have to stress of having a major outbreak. I just had a massive reaction about 30 minutes ago at the store. I itched the whole way home.
I am not joking, they should figure out how to induce Cholinergic Urticaria & use it as a form of torture for terrorists. It would work!
Thanks again for the great post, and welcome to the forum.
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Title: Re: chronic cholinergic urticaria
Post by: Bauer on May 25, 2009, 09:41:24 AM
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Quote from: HivesGuy on May 22, 2009, 03:36:57 PM
I am not joking, they should figure out how to induce Cholinergic Urticaria & use it as a form of torture for terrorists. It would work!
I’ve had the exact same thought many times…
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Title: Re: Xyzal
Post by: pinkleopard on June 08, 2009, 09:18:07 AM
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when i first became sick with hives, one of my initial dr.’s visits was to an allergist for testing. after being diagnosed as “allergic” to a myriad of things (food, plant and animal) i was prescribed xyzal. i took it for about one month with no luck. 🙁 still got mean, itchy, red hives daily.
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Title: Re: Xyzal
Post by: Honkymagoo on June 25, 2009, 05:48:22 PM
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I guess it doesn’t work for everyone. I’ve been taking them if I know I’m going to be out in the heat and potentially breaking out and it seems to lesson the severity and increase my tolerance. It doesn’t completely stop the hives, though.
It’s working the same way for my friend and fellow Cholinergic Urticaria sufferer.
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Title: My new medication for Cholinergic Urticaria
Post by: Chrissy on December 09, 2009, 02:17:18 PM
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I’ve had Cholinergic Urticaria for 5 years now. I’ve been on either Claritin or Zyrtec as treatment this entire time. I’ve also be prescribed other anti-histamines that caused me to be extremely drowsy & almost fall asleep when driving. Needless to say, I quit taking that medication immediately.
I have a new physician who has gone over my Cholinergic Urticaria with me. He had me try Xyzal. It seems to be more effective than Zyrtec, but I still do get hives. Claritin did not work for me very much. Zrytec helped, but I would break out into hives in 3-7 minutes into exercising. With Xyzal, it takes around 20+minutes to break out.
It is a prescription only, & my insurance does NOT cover it… so its approx. $100/month. As my doctor explained it, Xyzal is Zyrtec but more pure & stronger. So, if you are allergic to Zyrtec (centrizine), I don’t think you can take Xyzal. Also, it does cause drowsiness, which gets better after a few weeks (for me anyway). But so far, its helped me to get back into the gym & work out for at least 30 minutes a day. Yay!
Changing physicians seemed to help me out. I feel like perhaps my old physicians were not as knowledgeable as my new doctor about Cholinergic Urticaria. In fact, my previous doctor didn’t believe that the cause of my hives was heat. Its been a frustrating process. But with a good doctor who wants to help & puts time into finding cures, I’m optimistic, for the first time in 5 years.
I hope this helps someone out there!
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Title: A brief and yet detailed description to how I got Cholinergic Urticaria.
Post by: ryan115544 on January 26, 2010, 11:06:41 PM
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I contracted Cholinergic Urticaria over a period of approximately 3 months. For reasons unknown, I am the type that likes to document every little detail in my life. Moving on, how I got my Cholinergic Urticaria is as follows.
Starting in early November I began using a conditioner, recommended by the girl that cuts my hair (OK, I have frizzy hair, yes lol). When I first starting using this conditioner, after washing it out I noticed I would get a tickle-ish itchiness on my head. After a two or three weeks using it, the itchiness started to come on in my scalp area only when introduced to heat; which I figured was due to my dark hair absorbing the sunlight and heating up my head to itch. In the following month my itchiness in the heat spread from my scalp alone, to the rest of my body. The itchiness spreading was a gradual built up, and continually got worse. Sometime I in mid-late dec. I hate my first red splotchy break out. Since then, I’ve been breaking out several times aday. I finally went to see a doctor yesterday, 1/25/10.
She told me about my condition, and being very shy I got flustered and broke out right there in the room. Because the reactions were still gradually increasing, it was my worst break out yet. I broke out all over, completely red, and for the first time I got Hives, they covered the span on my body. The physician was shocked and called all the other doctors and physicians from the building to watch. (I forgot to mention my hives come on in under a few seconds and disappear in under 20 seconds, but when they are there they might last up to 20 minutes or longer, and my hives disappear as soon as I cool off.)
So after they were done looking I was given an ice pack and allowed to cool off, to their astonishment they disappeared in mere seconds. I have been prescribed an antihistamine called Xyzal, it’s new and the fancy version of Zyrtec I am told. I still use the conditioner now, because I stopped using it in the month of December and there was no change, so I have figured that the conditioner triggered it, but stopping using it now is pointless because it is already here. After one month I saw absolutely no difference in my break outs, they continually got worse like mentioned before. So, why not break out with shiny smooth hair?
-Thanks for reading, I hope you find something that helps you!
P.S. I am hoping the Xyzal will atleast allow me to bear it to some extend, I live in Southern California and it is summer year around. I would like to walk about like all the other kids, I am only 15. I cannot go from class to class without a break out. I know at this time that going to the beach like any other kid my age this summer is already beyond impossible, but I would atleast like to sleep and shower without worrying about how warm the water is or how hot I get under the covers.
Keep on fighting.
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Title: Re: A brief and yet detailed description to how I got Cholinergic Urticaria.
Post by: billysielu on January 31, 2010, 01:59:13 PM
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My doctor said that there can be a type of person which is more susceptible to allergies. So if you’re allergic to one thing, you’re more likely to also be allergic to something else.
It sounds to be like you were allergic to the shampoo. Knowing that the symptoms of Cholinergic Urticaria are the same as those for an allergy, I guess that might be your trigger.
I imagine it’ll ease off with time. Avoid things that trigger allergies. Forget taking anti-histamines for now.
Consult your GP if your symptoms get worse. Try and ease through it without too much stress, it’ll get better.
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Title: new antihistamine “cocktail” that works for me
Post by: Chrissy on June 10, 2010, 12:11:05 AM
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I recently found a new dermatologist. I was hoping to find a different treatment plan. Prior to this I have tried Zyrtec, Xyzal (its bascially a stronger more drowsier Zyrtec), Claritin, some other rx meds, benadryl, & acupuncture. For the most part, Zyrtec works for daily activities, but not for exercise. The Xyzal was expensive & worked but caused too much drowsiness for me.
This time, my new doctor put me on Zyrtec (1x/day), Claritin (1x/day), and Allegra (fexofenadine 2x/day). I did this for about a month & when I exercise I either got less hives or if I got any, they didn’t itch.
After a month, he took me off of the Claritin. For the past few weeks, as long as I’m diligent on taking the meds, I don’t even get hives when I work out. Next week, I’ll be taken off the Zyrtec. Eventually, his goal is to get me off of all of the antihistamines completely. I’ll try to post an update after I’m off the Zyrtec.
After 5 years of these hives, I’m finally exercising!! And my blood pressure is getting more controlled!!
*Crossing my fingers* I hope this treatment plan works!
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Title: Re: new antihistamine “cocktail” that works for me
Post by: HivesGuy on June 10, 2010, 02:37:48 AM
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Hey Chrissy,
Thanks so much for posting that info.
Wow, that is certainly a lot of antihistamines lol. If I took that combination I probably would be a zombie. Are they giving you any bad side effects?
I am glad the combo is working out for you. It is interesting that your dermatologist is putting you on a high dose, and then is going to ween you off to see if it helps. Please keep us posted on how this works out.
Thanks again for the great post, and I hope your hives stay away.
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Title: Re: new antihistamine “cocktail” that works for me
Post by: Chrissy on June 18, 2010, 12:18:29 PM
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Hello…
So here’s an update on my hives. I just got off of Zyrtec 2 days ago. Now I’m down to just Allegra, 60 mg 2xs/day.
I exercise daily now. The first day I was off the Zyrtec, I broke out into hives during my exercise, but I’d estimate it at around 20% of my body & it wasn’t too bad. I finished my exercise for the night.
The second day I was off of Zyrtec, I did a full hour of cardio outside & had no hives. Hopefully, this will continue to work.
The only side effects I had with all of these meds was the dry mouth & dry eyes. It causes my breath to stink. And being a dental hygienist, its kinda a bad thing to have worse breath than the patients! haha
So I have to use extra fluoride rinse to help to prevent cavities & control the breath issue. Still completely worth all of the meds. I wasn’t too drowsy b/c I was already used to Zyrtec. I don’t think Claritin or Allegra cause drowsiness, but I’m not exactly sure.
By the way, since I can finally exercise, I decided to go all out & do one of those exercise programs you see on tv. Before I could barely walk the dog without hating life. Now, I can do all this CRAZY exercise. Hopefully this helps someone out. Its a life saver for me. Blood pressure under 120/80 every time I take it (it used to be all over the place & super high at times). Lost a few pounds already, and am getting more fit.
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Title: Re: new antihistamine “cocktail” that works for me
Post by: Chrissy on September 28, 2010, 01:22:44 AM
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SO… I’ve finished taking all of the medications. At this point the doctor was hoping all of my hives would be gone or at least under control. But, of course, they’re just as bad, maybe even worse. Now without medication, I itch for just as long. I’m not as red though. The part that sucks is that my hives are now on my face & my inner lip! I used to get it everywhere except my hands, feet, and face. Now, I get it everywhere.
BTW, it was my goal to be on no medication because I’m trying to get pregnant. However, IF you don’t need to get off medication, I’d say Allegra is a great way to go.
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Title: Re: new antihistamine “cocktail” that works for me
Post by: HivesGuy on September 28, 2010, 12:54:42 PM
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Hey Chrissy,
Thank you so much for updating us on things. I am so sorry that you hives haven’t improved. Trust me, I know exactly how you feel. Mine are being so annoying, and it has really made me frustrated and even a bit depressed over the past couple of months.
I am getting hives just about everywhere too. My hands and feet randomly itch in the mornings, which is very annoying.
Thanks for the tip about Allegra. I would like to try it sometime. As of right now, I am trying my best to avoid any meds too. I just get tired of taking them all the time, and since it is getting cooler outside, I am hoping that my hives won’t be such an issue for a few months.
By the way, I can relate to your wanting to get pregnant. My wife and I talk about kids sometimes, but I really want to wait until my hives get better. I don’t want to be a hermit and not be able to do anything with my kid. And I totally respect your not wanting to take antihistamines while trying to get pregnant. It is probably the safest thing, because you never know if they could potentially harm a child–so on behalf of humanity–thanks for trying to actually think of your future child’s well-being lol. Most people don’t care about those things these days, so it is nice to see that you do.
Anyway, I really hope that your hives improve soon so you can continue with your family plans. Hang in there, and hopefully things will improve soon (for all of us hopefully).
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Title: Here is my story that is probably like everyone else’s.
Post by: LookMaNoHives on January 27, 2011, 06:49:57 PM
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So, I have had cholinergic urticaria since September of 2010. I am a 21 year old female from central Illinois but I am going to pharmacy school in Iowa. All of my problems started when I moved into my apartment for college at the end of august. After the first day living here my allergies were acting up worse than they have my entire life. In addition, my asthma was so bad I had to go get an emergency inhaler before my pharmacy school orientation the next morning.
I was sneezing constantly, nose running constantly, couldn’t breathe, eyes were watering. I had been taking zyrtec all summer already so I didn’t know what else to do. I was miserable for the first 4 weeks of school. During week 2 I went to an exercise step class. At the end of the class I noticed that I had this red rash all over my arms and stomach. It freaked me out but went away after like 2 hours. I ignored it and attended the same class the following week and I got hives even worse. I asked the health center about it and they told me it was just a heat rash and not to worry about it. At this point I started getting hives when I would go outside in the summer heat. They didn’t really itch too bad at this point.
About week 3 it started getting unbearable. It got to the point that going up the one flight of stairs in an air conditioned house I would get hives and my palms and soles of my feet would itch like no other. I would rub my hands and feet on the carpet for relief but it didn’t work. I had to work one day after class so I had to wear tennis shoes which was awful in the summer. When I got in my car and started driving my palms and feet start itching so bad I felt like throwing up.
I had my air conditioner blasting in my car and had to kick my shoes off as fast as I could. It was this point when I realized that I had to do something. I had been researching my symptoms almost every night trying to figure out what was wrong with me. My final conclusion was urticaria. My allergies were still awful and I couldn’t handle walking from my house to the car without itching unbearably so I called and made an appointment with an allergist.
I was tested for 60 different allergens. I am extremely allergic to dust mites, dust second, then mold and animals with fur. My allergist said that I had urticaria, the causes aren’t known, and if I could get it to go away for a week it probably wouldn’t come back. Prior to this I had tried Claritan, Zyrtec, and Benadryl. The allergist put me on Xyzal (for those who don’t know, it is just a purer form of Zyrtec, and theoretically it shouldn’t work any better than Zyrtec). However I switched from Zyrtec to Xyzal and my hives decreased dramatically. I was taking it every night and got to the point of taking it every other night. I didn’t realize that you were supposed to avoid your triggers so I continued exercising and the Xyzal gradually stopped working. I called the allergist and they had my start taking Claritan in the morning and Xyzal at night.
Since antihistamines cause you to be dry, my eyes dried up and my contacts rubbed and gave me an ulcer in my eye. The eye doctor said that I can’t be on two antihistamines because my eyes are too dry even without wearing contacts. I called the allergist again and they switched me to cyproheptadine which is a first generation antihistamine (like Benadryl). Some other uses for this medication is to increase appetite, so needless to say I’ve gained 10 lbs in the last month. It is working pretty well though! I have stopped exercising as well which doesn’t help the weight situation. I started taking it 3 times a day for about 2 weeks. Once I can go a whole week without hives they have me decrease my medicine. I am now taking it once a day. I get hives usually when I go from outside in the snowy cold to inside in the heated building and I’m wearing a coat.
I just want to say that I am glad there are other people out there who know what I am going through. This disorder can really get you down. Just a couple days ago (day 6 of no hives) I decided to do some sit-ups to help me tone up a bit without giving me hives. I was feeling good because I got to call the allergist the next day and hopefully go down to taking the allergy pill every other day. I got hives… of course. It upset me and I cried for about an hour. All I could think was “why me?” I feel like no one understands and it makes me feel even more hopeless. I hope my story wasn’t too long and boring, but I love this forum! When I read the subline, I just knew this was the one for me. I tell people everyday that I get hives when I get hot or exercise. On a positive note, it is kind of fun telling people that I am allergic to my own sweat. It reminds me of the movie Role Models when Jane Lynch describes that some of the children at SturdyWings are allergic to their own sweat. If you made it this far, Thanks for reading!
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Title: Re: Here is my story that is probably like everyone else’s.
Post by: HivesGuy on January 27, 2011, 08:23:55 PM
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Hey Look ma!
Excellent post and thanks so much for sharing it with us all. It was very interesting to read it. Your story definitely sounds like so many of ours. That is very interesting that you have a lot of other allergies, and especially the dust mite thing. It seems a lot of people on here test positive for that (although not all). I have also noticed a lot of people with Cholinergic Urticaria have asthma as well (I don’t though). Also, that’s cool that you are in Pharmacy school. Maybe you can keep us up to date with new medicine breakthroughs lol.
That is also interesting that the Xyzal worked better, and I haven’t tried that one. But it is bad what it did to your eye.
Also, I can definitely relate to your feelings of sorrow and frustration with this. I too have cried a few times over the years, and thought “why me, why can’t this just go away, etc.” I think we all feel that at times. But we just have to dust ourselves off, and remember that there are good days and bad days, and this will probably get better and/or go away eventually.
And yes, it can be interesting telling others that we are allergic to our own sweat. People are really shocked to find out there is such a thing.
Thanks again for the awesome post, and welcome!
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Title: Re: Here is my story that is probably like everyone else’s.
Post by: LookMaNoHives on January 28, 2011, 10:13:37 PM
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Thanks HivesGuy! I really really like this site and what it does! I feel like I fit in somewhere! After reading other posts I have noticed that a lot of us have some stuff in common. I will try my best to keep everyone up to date on the medicine breakthroughs! However, I don’t think there is very much research or awareness to what we have.
I have made progress in my eyes! I had to switch to really expensive daily contacts, but I guess it is better than glasses.
Again, thank you for being so kind to me! I’m really excited that I found this place and hope that we can all get better! The only downside is that a lot of people have had this problem for years, and I was banking on it being over in a couple months. lol. One last thing, the other day I remembered my years high school and how I would try to get out of running a lap everyday in PE by telling my teacher I was allergic to running! I guess the joke is on me!
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Title: Re: Here is my story that is probably like everyone else’s.
Post by: HivesGuy on January 29, 2011, 03:54:54 AM
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Thanks for the compliment on the site. I enjoy it myself due to all of the great forum members.
And that is hilarious about the running excuse! You certainly are getting paid back for that one, ha!
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Title: Re: Xyzal and Cholinergic Urticaria
Post by: LookMaNoHives on February 02, 2011, 10:51:34 PM
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I know it has been awhile, but if anyone new reads this, I was also on Xyzal after I was first diagnosed. It helped me a lot! After one pill I could walk to my car without an intense burning sensation in my hands and feet! Xyzal is really just a purer form of zyrtec. They say that if Xyzal works, theoretically Zyrtec should work just as well. However, I was on Zyrtec before I even was diagnosed and it didn’t help at all. The Xyzal showed vast improvements! However, I kept exercising and it seemed the more I exercised the less Xyzal worked and I was switched to a different antihistamine.
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Title: New antihistamine that works wonders
Post by: nehcrow on October 27, 2011, 03:16:45 PM
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It’s known as levocetirizine, brand name Xyzal. everybody should try it out! It’s virtually cured me of this condition and best of all it’s over-the-counter!
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Title: Re: New antihistamine that works wonders
Post by: HivesGuy on October 27, 2011, 04:53:09 PM
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Hello nehcrow,
Thanks so much for sharing that and welcome to the forum. I am really glad that this antihistamine seems to help you so well. Let us know if anything changes.
Thanks again and I hope all goes well,
Hivesguy
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Title: Re: New antihistamine that works wonders
Post by: baseball1288 on November 14, 2011, 05:41:14 PM
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Has anyone else tried this? Does it really work?
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Title: Re: New antihistamine that works wonders
Post by: Cathie on November 23, 2011, 09:12:29 PM
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I’m taking it too and yep, it works! 🙂 Or at least it has for 3 years. I have chronic hives so I’ve been taking it, and I haven’t had them since. Until a few days ago. I don’t know if it’s actually hives so I’m giving it some time, but zantac helps, so I’m assuming it is. Need to go and see my allergist, however this drug saved me from a miserable life for the last 3 years so it’s worth trying!
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Title: Re: New antihistamine that works wonders
Post by: Batavan on December 04, 2011, 01:50:26 AM
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I want to try this out, but I don’t know if it’s available in Canada and I don’t know if I can trust buying medication over the internet.
How long have you been using it? I’ve tried many brands that seem to “cure” me, but then only lasts a few weeks before medication becomes ineffective.
Thanks for the info, I’m going to look into this!
Edit:
Looking at xyzal, and it looks like I need a prescription?
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Title: Re: New antihistamine that works wonders
Post by: HivesGuy on December 04, 2011, 07:58:45 AM
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Quote
I want to try this out, but I don’t know if it’s available in Canada and I don’t know if I can trust buying medication over the internet.
Yeah, I definitely wouldn’t trust it. You never know what you’ll get, and many people have gotten scammed, or sent sugar pills, and worse. So I definitely wouldn’t do that.
Just a thought though–perhaps you could talk to your doctor about rotating antihistamines and you can’t find one that keeps the symptoms gone for you. You said you get used to them after a while. Perhaps switching every week or two would maintain the effectiveness of them for you? Just a idea.
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Title: Pharmacotherapy for cholinergic urticaria is futile
Post by: VIP on December 13, 2011, 12:39:27 PM
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Anyone else feeling the same?
Is anybody here on a drug for Cholinergic Urticaria that they are 100% certain is helping?
The problem here on this forum is people are posting up x, y and z new drug is great but it’s next to impossible to figure out if it’s placebo/environmental or otherwise and we have no way of knowing if they would have felt the exact same if they were taking no drug.
For example I myself was on anti-histamines for over a year thinking they were working amazing only to find my Cholinergic Urticaria to come back during the winter ten fold on the same dosage of anti-histamines.
I think now is a good time to ask as most of us here seem to have Cholinergic Urticaria due to poral occlusion and during the winter our condition seems to be at its worst. Where as if I posted this same thread during the summer I might have more people posting “yes I have great success with x drug” when in reality it’s probably the weather that is alleviating the condition and not the drug working at all.
– VIP
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Title: Re: Pharmacotherapy for cholinergic urticaria is futile
Post by: HivesGuy on December 13, 2011, 02:26:44 PM
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Hmm, great question.
Given all of my experience of reading the forum all these years (and my own hives as well), I don’t think I’d say that drugs are worthless in treating Cholinergic Urticaria. There are certainly plenty of people who were helped signficantly with some drug treatment (whether it be antihistamine variations, vitamin d, or a few other types).
For example, BBroom was able to pretty much keep her hives at bay for years and years (summer and winter) by taking her regimen. Silvertones takes his meds and really says they help him a lot as well. Willdev has gotten at least a little relief with antihistamines (at least enough to bear it a bit more) and so forth. Most of these people have been able to go for years (not just summers) taking a certain combination of antihistamines or other treatments.
Also, I myself have definitely experienced reduction in symptoms in the past by taking antihistamine combinations. With that being said, drugs won’t always reduce the condition 100%. But for some people, I believe their quality of life is really improved by taking something that works for them.
Of course the ideal is to avoid drugs if possible, and to only take something with minimal side effects. I think each person has to weigh the pros and cons and decide if they should try something. It could be that some drug would work for you, but you haven’t tried it yet. I remember when I first took Allegra how it really knocked my symptoms down. A few weeks later I had adapted to it completely–and it was like I took nothing. So if you took something all summer, it may be worthwhile to switch things up or rotate different antihistamines (talk to a doctor of course).
Also, if this forum has taught me anything it is this: Some things can work wonders for one person, and be completely useless for another. So it really can pay big dividends to spend a good deal of time working with a doctor to try different antihistamines and other treatments mentioned on here.
It is pretty much winter here now (we’ve had many cold days), and so far I am managing my hives completely. I do not have to take any medication at all, and I am able to still break a sweat, shop, and so forth.
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Title: Re: New antihistamine that works wonders
Post by: Ace0003 on December 22, 2011, 10:43:06 AM
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Thanks for the tip nehcrow. I have had chU for almost two years now and nothing has really worked for me except exercising in the mornings to make the reactions less painful. The only medication that has worked even a little was Alertec but it seems like it is loosing its effect. I am going to go and buy this medication today to see if it will give me at least some relief. darn persistent hives haha!
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Title: Re: Pharmacotherapy for cholinergic urticaria is futile
Post by: Cathie on December 25, 2011, 07:17:01 PM
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I thought my Xyzal wasn’t working but it turned out I got some random yeast rash (I have a daughter in diapers, and the doc figures it was something really random like that). So far, my Xyzal is working for my hives. I haven’t had an actual case of hives while on Xyzal EXCEPT while I was pregnant. I started taking it in 2008, was pregnant between November 2009 and Aug 2010. So Oct 2008-Nov 2009 then Nov 2010-current day.
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Title: Re: New antihistamine that works wonders
Post by: Cathie on December 25, 2011, 07:22:16 PM
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Quote from: Cathie on November 23, 2011, 09:12:29 PM
I’m taking it too and yep, it works! 🙂 Or at least it has for 3 years. I have chronic hives so I’ve been taking it, and I haven’t had them since. Until a few days ago. I don’t know if it’s actually hives so I’m giving it some time, but zantac helps, so I’m assuming it is. Need to go and see my allergist, however this drug saved me from a miserable life for the last 3 years so it’s worth trying!
Update, it wasn’t hives. The Xyzal is still working (I’m actually taking the generic).
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Title: Re: New antihistamine that works wonders
Post by: anjelwings on January 04, 2012, 10:24:22 AM
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I am googleing this Levocetirizine and only finding it available by rx…is this outdated info I am finding? I do not have an allergist so otc would be best for me. :-
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Title: Re: New antihistamine that works wonders
Post by: HivesGuy on January 04, 2012, 10:44:28 AM
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I’ve never seen it OTC, so I am guessing it is prescription (in the US at least). Anyone taking this know for sure?
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Title: Re: New antihistamine that works wonders
Post by: Ace0003 on January 06, 2012, 10:54:42 AM
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Yeah, I couldnt find it OTC… I was super excited but I guess it must be a prescription.
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Title: Re: New antihistamine that works wonders
Post by: Struikgewas on January 19, 2012, 05:34:15 AM
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I’m taking three levoceterizine-tablets each day for a few weeks now, it didn’t make a difference yet. My docter says I can go to four of them each day to see if that will work. Four tablets per day is the maximum he says. So there’s still a chance left!
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Title: Hello, another Cholinergic Urticaria patient for about 16 years (Greece)
Post by: nkarafo on March 23, 2012, 04:54:07 AM
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Hello,
I have Cholinergic Urticaria for about 16 years, I am 32 years old and I’m trying to find a “cure”, a “therapy”, something.
I’m taking everyday Xyzal but the last days I’m having hives easily due to our sun. Here in Greece sun is bright. But in summers I don’t have so much problem because my body is getting used to heat and I’m somehow immune. BUT if I stay too much time under the sun, for example in beaches, then I DO have a problem. That’s why I don’t go for swimming. I’m trying to find a girlfriend but I have this awful hives and it’s not easy task to do it. Nowadays, I have hives even walking from my house to metro station (about 15′). And when I’m having hives, I’m staying back to the last coach of metro, to avoid others see me.
I’m considering to buy a machine for working out in my house because I was reading here in the forum that many people when starts working out regularly, the hives are gone. And if that’s true then I will buy a stand-bicycle or any similar to try it !! Can you please suggest to me something?
I have also fat that I want to lose but I’m not very fat. I’m almost 75kg.
Thank you all and good luck to everyone about this awful allergy.
Nikos
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Title: Re: Hello, another Cholinergic Urticaria patient for about 16 years (Greece)
Post by: HivesGuy on April 05, 2012, 10:46:36 AM
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Hello nkarafo,
Thanks for your post and welcome!
I’m sorry to hear about your troubles with this. To answer your question, yes, exercise can definitely help. But only if you have a mild case of Cholinergic Urticaria. If you have a severe case, or have a history of feeling faint, nausea, or having swelling issues, then I’d definitely avoid it. And you always want to talk to a doctor as well to make sure its a good idea.
Also, what really worked for me was diet changes (and I also did a lot of changing over to hypoallergenic products). That’s what worked best for me. It takes time, but it was well worth i
I am hives free and I can sweat, workout, be in the sun, get excited, etc.
I hope you get better soon.