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trinity244 01-05-2005 03:10 PM

Re: severe chronic urticaria
 
Hi all hive sufferers. I have had chronic hives for 11 years. It all started about 6 months after my son was born. I was excersizing to some workout video and suddenly felt really itchy on my stomach. I had hundreds of welts. Since then I now get red spots, blotches, and hives anytime I do anything that gets my heart going. The doctors have said it's excercise induced, but I also will get them from just being hot from the sun or in a hot tub, cold from the air temperature or touch of cold things, and I will break out when I am highly stressed. I can't even take my dog on a walk without hives. I do not get them when I am asleep at night, so at least that is a relief. I have spent thousands upon thousands of dollars trying to find out what is causing my problem. Specialists, blood tests of every kind, x-rays and ultrasounds (why? I'm not sure), skin scrapings, skin biopsy, parasitology, allergy testing, etc., etc...... I even grew desperate and saw a homeopathic doctor. She gave me mountains of supplements, acupuncture and a weird therape called NAET which is supposed to rid your body of allergins. All it ridded me of was a lot of money. Drugs i've tried (sorry about spelling)- Zyrtec, Singulair, Allegra, Rinitadine, Hydroxizine, Prednisone, Clarinex, and Doxipin. I'm sure there are more but I can't remember them all. I live in Phoenix, AZ and as you might imagine it is very, very hot here in the summer. That is when I really suffer. Anytime I leave the house. Right now I am only taking 25 mg of Doxepin in the morning with a No-Doz caffeine tablet to keep me awake. I can take this up to 4 times a day, but during the winter my hives aren't that bad. I will say the Doxepin helps, but I still can't do anything active. Previously, I was taking a 25mg hydroxizine, and 1/2 of an Allegra 180 with my no-doz twice daily. That was the only way to leave my house in the summer. I also started allergy shots once weekly about 4 months ago. I have to do that for a year. I doubt it is going to help. I went to get my shot today and requested to try sulphasalazine. I'm hoping as usual that this may be the one.I don't want something just to help. I want to be fixed. I want to be normal. I want to have fun. I keep thinking that there must be a common thread between all of us. If we knew that, maybe we could get help.

ahimsa 01-05-2005 03:28 PM

Re: severe chronic urticaria
 
Trinity, you wrote "It all started about 6 months after my son was born." That's interesting, because mine started about 18 months after my son was born. Among the countless possible causes that weave in and out of my brain, I can't help but wonder if the hormonal changes of maternity have something to do with my hives. Has anyone else here only had chronic hives after pregnancy/childbirth? (Short-term hives after eating/using something don't count.)

Thanks,
Kristi

trinity244 01-05-2005 03:48 PM

Re: severe chronic urticaria
 
Hi kristi. I know someone else who was getting hives while she was pregnant and they stopped after her daughter was born. Doctors told her that hormones could be a factor. I have also wondered about hormone involvement myself. I used to have the Norplant birth control device and had it taken out beacause I thought it might be causing the problem. I have since been taking birth control pills and wonder again if this doesn't contribute. I have actually thought about getting an IUD instead, just in case the hormones are the problem. I discussed my syptoms with my gynocologist and she hadn't heard of any allergies or reactions related to birth control pills, but then again we all go see allergists and immunologists, and dermatologists. So, I'm not sure they would even know.

ttddttdd 01-07-2005 05:45 PM

Re: severe chronic urticaria
 
[QUOTE=angel monkey]:bouncing: HAPPY NEW YEAR TO ALL!,

IV'E NOTICED THAT NOT A LOT OF PEOPLE HAVE WRITTEN ON THIS BOARD LATLEY, I HOPE IT'S NOT STARTING TO DIE DOWN, YOU GUYS ARE THE ONLY ONES WHO UNDERTAND WHAT IT'S LIKE TO SUFFER WITH THESE HIVES, WELL HOPEFULLY IT'S JUST THE HOLLIDAYS THAT HAVE KEPT EVERYONE AWAY. TOMORROW I AM GOING TO A PHYSICAL THERAPIST TO SEE WHAT HE CAN DO, DON'T ASK ME WHAT HE CAN DO, MY HUSBAND SUGGESTED IT BUT AT THIS POINT I WILL TRY ANYTHING. I WILL LET YOU ALL KNOW IF IT HELPS AT ALL. WELL HOPE TO HEAR FROM SOMEONE SOON. HAPPY HOLLIDAYS!
--ANGEL MONKEY[/QUOTE]Hi! I am not going to leave. I really like coming here and talking to people who really understand what we are going through. It does help to share stories. Who knows, maybe someone will come up with something that really makes a difference.

ttddttdd 01-07-2005 05:53 PM

Re: severe chronic urticaria
 
[QUOTE=trinity244]Hi kristi. I know someone else who was getting hives while she was pregnant and they stopped after her daughter was born. Doctors told her that hormones could be a factor. I have also wondered about hormone involvement myself. I used to have the Norplant birth control device and had it taken out beacause I thought it might be causing the problem. I have since been taking birth control pills and wonder again if this doesn't contribute. I have actually thought about getting an IUD instead, just in case the hormones are the problem. I discussed my syptoms with my gynocologist and she hadn't heard of any allergies or reactions related to birth control pills, but then again we all go see allergists and immunologists, and dermatologists. So, I'm not sure they would even know.[/QUOTE]Welcome Trinity244. My hives did not appear until my son was about 9 years old. I never had them during pregnancy. I don't believe it is hormones based on the tons of research I have done, but I could be wrong.

ttddttdd 01-07-2005 06:04 PM

Re: severe chronic urticaria
 
[QUOTE=Cherylle]I have just come across this thread and my **** you guys are all the same as me, I swear it could have been me talking in most of these posts! I suffer from Chronic Hives - Ideopathic Urticaria. Idiopathic meaning when one gets hives for no apparent reason. Hives are not always caused through allergy, altho I wish they were cos then I could just find the cause, avoid it and I'd be right.

I have suffered for years now but thankfully at the moment am in "hive remission", I live in fear for the day I wake up covered in them again. I know it will happen cos it always does, doctors have told me I could suffer on and off with this forever.

I can not offer any magic solution, I have tried many drugs and all the rest of it but no relief. It truely is torture, such a cruel cruel thing that I don't think anyone can understand the intesity of it unless you've gone through it. So just know that fellow sufferers like myself understand and have great sympathy.

Take Care,

Cherylle[/QUOTE]Welcome Cherylle. Thanks for the helpful words. I was in "remission" once for a few months. I thought they just went away. Boy, would that be nice. They came back at full force and have had them everyday for a few years since. The Doxepin that I've been taking for about 2 months seems to be keeping away the major bad flareups. But, like our other forum friends, I still get them from things like sitting on a wooden chair and apparently from messing with Christmas trees! Nice to hear from you.

elli3 01-07-2005 07:31 PM

Re: severe chronic urticaria
 
So excited to have found this board. Have been suffering from chronic hives for almost 1 1/2 years. Going to an allergist who really does not have a clue. I am on clarinex / cimiditine in the AM and zyrtec / cimidtine in the PM and it is tolerable. Wake up each AM to see what I am dealing with. It ranges from just a few to numerous ones on my trunk, thighs and inner arms. Not much itching.........then they fade in a few hours. Next morning............I wait to see what I'm dealing with again. I've had numerous tests.......blood, stool, and some food tests. Nothing environmental. Right now she has me trying to eliminate sulfites and coloring additives. Really tough trying to figure out every label of everything I use in cooking. Just plain frustrating. Sometimes in the morning I have a lot.........sometimes just a few. I'm trying to figure out.....if what I have each morning is a result of what I've eaten the day before or not. Or if I get lucky and eliminate the cause will I still have hives for a period of time until they are "stifled" and out of my system?? It is hard to determine what is a reaction to hives and what is just what has been in my system for a while. Does any of this make sense?? Just frustrated. It really helps to read all your posts..........and hope that maybe something in what you write will help. Next month I'm having our carpet changed on our porch and thinking it could be mold (which is also in wine....which I used to have a glass each evening). We live in Florida and our carpet on the porch is the original and our home was built over 20 years ago.....just curious what is under the carpet!!! I know........I'm really reaching, but would love to have an answer to this. Any suggestions or comments would really be appreciated. :wave: [FONT=Arial Black]undefined[/FONT]

HAIRDOER 01-10-2005 08:14 AM

Re: severe chronic urticaria
 
I wanted to let ya'll know what the drematologist said when I went back last week.
He doubled the Neoral to 50 mg a day. I have had no relief so far,but I have had no side affects yet either. H saiit could take three months and will see me again in Februaury and I have to continue with getting blood pressure checks and blood work done before my next appt.
I am going to be flying to Florida in a few weeks and am hoping I don't get any worse and I am wondering how the flight will affect me too. Will I get hives from my seat belt and the seat from sitting for so long. I am wanting to do a few fun things while I am there. Probably get welts on my shoulders from carring my luggage around the airport and to the car. The person I am going to see has no idea about me having this,so I will probably have to explain it all to her. I imagine I will wear shorts and maybe want to wear a swimming suit but I wonder how many welts and red spots I will have on me. What if I go walking on the beach and step on sea shells.......gets hives on my feet from that too. All these things I have to be careful about. Sucks!
But I will have fun anyway. That is my plan to do things as normally as possible. Wish me luck!

angel monkey 01-10-2005 11:16 AM

Re: severe chronic urticaria
 
Hairdoer--

I said before I went to the physical therapist that I didn't know what he could do for hives, he was a friend of my husbands so it was free of charge plus like I said before I will try anything at this point, so it didn't sound stupid to me. Besides that, I don't have pressure uticaria, I just have them everywhere all the time. But I guess that it would have been stupid for you to try it, that's why you laughed when you thought of it.
Anyway, the therapists theory was that if he can fix other problems that I have maybe it can help with the hives. I know it's farfetched but I am misserable so... he says that I have a imbalance on the right side of my body, he gave me some excercises to try. He thinks that it all plays toghether, the headaches, backaches...and possibly the hives, but he more worked on the imbalance hoping to help with that and the hives would then take care of themselves. As of today I still have hives but it was worth a shot in my eyes. And maybe it will still help with my back and headaches. :)
well good luck everyone and I'm glad your all back.

angel monkey 01-10-2005 11:27 AM

Re: severe chronic urticaria
 
p.s.
My hives also started with the pregnancy of my first baby who is almost 4 now. At first I didn't worry about it too much because the doctors thought it would just go away once I had my baby. It did get better for awhile, but never went away. Now I also have a 1 year old, and the hives are worse then ever. The doctors said for awhile that it could be stress, I don't think so though, the only think I am stressed about is the stupid hives. And now the doctotrs don't even try ti guess at what is causing them anymore. Well good luck everyone, I wish you all the best

jessica430 01-13-2005 04:50 PM

Re: severe chronic urticaria
 
this is my first time posting. i'm still a little confused about how it all works, but here i go. i've had chronic hives for about 8 years now(wow-has it been that long?) i went to an allergist once-never did any tests. no known allergies, no common threads, no new detergent, nothing. and i get them for different reasons. i was told to go to boston for testing, but i'm convinced i'm just afreak. i believe i have angiodema, physical urticaria(cold induced) and pressure urticaria. i get different hives in different places at different times. the last time i had them on my eyes or lips was probably about july 2004. i usually constantly get them in the winter-from my own cold hands. and the pressure ones i usually wake up with. i have a tendency to sleep with my arm under my pillow. i'll wake up with hives on my forearms and wrists-mostly my whole inner wrist will swell up so much that you can't see my veins or tendons(you usually can-i'm very petite and thin) seems like they appear on my veins. anyone else notice this? the cold ones drive me nuts-i hate the winter! since i'm small, i get cold very easy-especially my hands. well, if i have an itch on my face(not a hive) i will almost certainly get one one if i touch it with my cold hands. the allergist i seen (probably about 6-7 years ago) thought it was very strange-the whole ice cube thing. most people will develop a hive if they place an icecube on themselves in the exact shape of an ice cube-i don't believe that's me. i almost always get them in the shower-not even from touching myself. i'll just randomly get them in spots-my legs, hips, chest, back,etc. the ones i get on my face are bad-my lips will get three times their size and my eyes will swell up like a huge bug bite. i haven't had those ones for a while though(since summer) i take benadryl around the clock. if i miss a dose after 4 hrs in the winter, i will almost definately get hives. i haven't found anything else that works. i was put on zyrtec before(6-7 years ago) my doctor will not give me a prescription-they tell me to got to the allergist. why bother going through all that to find out nothing? i'm going to start a journal and i took pictures of myself in june when my lip and eyes swelled up last(separate occassions-but within days of each other) it's not an environment factor-will get them at any place-work,home,school,outside,anywhere. once my whole face was covered-couldn't take and went to the hospital. BEST SERVICE I EVER GOT! they tought i was allergic to a bee or something and rushed me right in for a shot of epinephrine. i was covered-even the bottoms of my feet(which i didn't even touch-usually the more i touch myself,the more i get.)well, any thoughts or ideas would be greatly appreciated. i'm glad to know i'm not the only one who gets them for no known reason. wish i could get long-lasting benadryl-very hard to remember to take it every 4 hrs.(plus, i can't take while i'm sleeping, so i'm almost certain to wake up with them)

jessica430 01-13-2005 04:51 PM

Re: severe chronic urticaria
 
[QUOTE=angel monkey]p.s.
My hives also started with the pregnancy of my first baby who is almost 4 now. At first I didn't worry about it too much because the doctors thought it would just go away once I had my baby. It did get better for awhile, but never went away. Now I also have a 1 year old, and the hives are worse then ever. The doctors said for awhile that it could be stress, I don't think so though, the only think I am stressed about is the stupid hives. And now the doctotrs don't even try ti guess at what is causing them anymore. Well good luck everyone, I wish you all the best[/QUOTE]
same feeling here! you don't get hives from stress, hives stress you out!!!

jessica430 01-13-2005 04:59 PM

Re: severe chronic urticaria
 
[QUOTE=trinity244]Hi all hive sufferers. I have had chronic hives for 11 years. It all started about 6 months after my son was born. I was excersizing to some workout video and suddenly felt really itchy on my stomach. I had hundreds of welts. Since then I now get red spots, blotches, and hives anytime I do anything that gets my heart going. The doctors have said it's excercise induced, but I also will get them from just being hot from the sun or in a hot tub, cold from the air temperature or touch of cold things, and I will break out when I am highly stressed. I can't even take my dog on a walk without hives. I do not get them when I am asleep at night, so at least that is a relief. I have spent thousands upon thousands of dollars trying to find out what is causing my problem. Specialists, blood tests of every kind, x-rays and ultrasounds (why? I'm not sure), skin scrapings, skin biopsy, parasitology, allergy testing, etc., etc...... I even grew desperate and saw a homeopathic doctor. She gave me mountains of supplements, acupuncture and a weird therape called NAET which is supposed to rid your body of allergins. All it ridded me of was a lot of money. Drugs i've tried (sorry about spelling)- Zyrtec, Singulair, Allegra, Rinitadine, Hydroxizine, Prednisone, Clarinex, and Doxipin. I'm sure there are more but I can't remember them all. I live in Phoenix, AZ and as you might imagine it is very, very hot here in the summer. That is when I really suffer. Anytime I leave the house. Right now I am only taking 25 mg of Doxepin in the morning with a No-Doz caffeine tablet to keep me awake. I can take this up to 4 times a day, but during the winter my hives aren't that bad. I will say the Doxepin helps, but I still can't do anything active. Previously, I was taking a 25mg hydroxizine, and 1/2 of an Allegra 180 with my no-doz twice daily. That was the only way to leave my house in the summer. I also started allergy shots once weekly about 4 months ago. I have to do that for a year. I doubt it is going to help. I went to get my shot today and requested to try sulphasalazine. I'm hoping as usual that this may be the one.I don't want something just to help. I want to be fixed. I want to be normal. I want to have fun. I keep thinking that there must be a common thread between all of us. If we knew that, maybe we could get help.[/QUOTE]
wow-you are almost the exact opposite of me! i am almost hive free in the summer and covered with them in the winter! i live in massachusetts-it's very cold right now. maybe we should switch homes!

jessica430 01-13-2005 05:08 PM

Re: severe chronic urticaria
 
i was on zyrtec previously-it worked well until i broke out and ended up taking more than the "recommended dose", after moving out on my own and getting my own insurance, my doctor would not give me a new prescription for it and i've been taking benadryl ever since. it's the only thing that works if i take around the clock BEFORE the hives come. but may i ask why the pepcid? i read about someone else taking zyrtec and pepcid, and then benadryl when the hives got real bad. does it work better when taken with pepcid or is it just to calm your stomach?

syandkm 01-13-2005 07:07 PM

Possible latex allergy?
 
I was having a terrible time with hives, welts over my entire body. The itching was so severe I felt as though my skin was on fire. The strange thing was I only got it at work. When I would leave work, the rash/hives/burning would subside after a few hours.
I am a [ [b] please carefully review the posting rules - do not reveal your past, current or future profession [/b] ] and people said it was stress related. Anyway, I started to get watery eyes, sore throat, nausea, dizziness, coughing and sneezing along with this terrible rash. I just dealt with it until I felt like I was going to die.I was finally tested for a latex allergy. Well, what do you know! My RAST was 1700 (normal is 0-70). I have a Type 1 latex allergy, also known as IgE anti-body mediated latex allergy. It is an allergy to airborne latex. Basically, every time I was (am) exposed to latex particles in the air, my body becomes more and more sensitized, causing an even stronger response. Basically, my signs and symptoms were the beginning of anaphylactic shock. Now, I have to avoid areas with latex (which is almost impossible), wear an allergy bracelet and carry an epi-pen with me in the event that I am exposed and have a severe reaction.
I get hives and itching all of the time due to latex exposure. I have found that the best medication for me is Atarax (Hydroxyzine HCL). This is an older drug, but it works better than any of the new ones out. It makes me a little sleepy, but it erases the hives and itching immediately. Doxepin worked well, but made me so sedated I felt as though I was in a coma.


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