To my fellow cronic urticaria sufferers

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Jeannie243

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Hi, I'm new and a CHronic Urticaria/Angioedema sufferer. Mine is autoimmune. I currently take 4 clarinex, 1 Singulair and 2 Zantac. I have been suffering with it for 5 years. If anyone has any questions I would be happy to share what I have learned about this disease over the years.
Jeannie
 
For starters everyone has been an inspiration to me and how I feel about the situation now, knowing I
 
hello again,
I know its been awhile since my last posting... I shoulda kept you guys updated. Well i went to the doctors ran some tests,ect. The answer was....... Bad. My blood levels are all over the place. I have way to many red blood cells or is it white hum i forgot anyways that and thyroid. 23 years old and my doctor tells me that most likely i will be on medication for the rest of my life because its not acting the way its suppose to? i dont have to many scientific terms i just know its alot to do with that. however i did want to mention my mother she has serveral problems occuring with age and kidney failure, when i told my mother the test results they were the exact opposite but the same effect and symptoms besides my moms doctor didnt cetch it. we know she has thyroid problems and in result to many problems including caused her to have kidney failure. so i hope im not on the same path but i thought id mention it for some of you to check with your siblings. it might help you solve yours.
 
Hi Aba! Welcome! I have a cousin-in-law from Aurora and they say it's gorgeous out there. By the grace of God they will get to the bottom of whatever is aggravating your system. Some of us have thyroid issues, while some are allergic to definite triggers, and then some of us have chronic idiopathic(unknown in nature) urticaria which is so frustrating. I know that getting to the allergist and if possible as many specialists as you can who deal with the other system issues that cause hives can be a good thing, also. I remeraber taking hydroxyzine(Atarax) and it knocked me out for a day and a half. I had the hives so badly that I had to have 100 mg. 3 or 4 times a day! Please keep everyone informed how you're making out because we all care. God bless and take care--Hopeto--
 
Hi, Thank you for your concern..... Well lucky me i just got onto Hmo the other day and went to see a specialist i had to come out of pocket alot of money that i dont have but i need to know. He of course put me on more medication and told me that 60% of the time you wont find out what caused the reaction. However, he sent me to the lab to take some blood work to see if he can find anything else that might be the problem. I have an appointment back with him in 10 days. Well see how it goes. For now im going to calm my nerves and not try to instill in my head that death gets closer.
 
Hi there,
I'm 26 yo female and have had hives for the past 6 weeks, so apparently now they are classified as "chronic". I gave birth to my first child approx. 6 months ago and the hives started in Septeraber 08 - about a month after I weaned off of Effexor for postpartum depression.

I'm absolutley miserable and have had no relief since the first day my hives started - I'm so upset and frustrated, not sleeping (like having a baby isn't enough - I can't stop itching long enough to sleep). I feel like I'm at the end of my rope and the quality of life is pretty poor right now.

Does anyone have any suggestions or have heard of dr. A. Kaplan? I'm in Canada and I'm bugging my GP to send me to an allergy specialist to be tested for autoimmune disorders - I just don't know what to do or where to start - I'm so itchy and nothing is helping... so frustrated.

Currently I take 2 reactin tabs in the a.m. upon waking up, about 2 - 4 benadryls throughout the day, 2 more around 8p.m. and 2 more at bed time along with a Singulair. I don't know what to do anymore - nothing is providing relief.

Any suggestions?

Kay
 
Hi, Dr. Kaplan is supposed to be the top specialist for CU. If you can manage to make the trip, its worth it.

Jeannie
 
Hi Jeannie,

I've been dealing with chronic urticaria for 6 months now (and am totally frustrated). What type of autoimmune is yours and how did you figure that out? I've had my thyroid tested and have since been put on eltroxin, it has helped the hives and at one point they were gone for about 2 weeks, but have since came back. Thankfully not as bad as they were in Septeraber but I think that's because I can control them a bit better now after finding antihistamines that seem to work.

What have yours been like for the past 5 years? constant and always the same or do you go through stages of flare ups then remission? My biggest concern is that my husband and I would like to try for our second child in Dec 09 / Jan 10 and I'm concerned that if I'm still on so many antihistamines (180 mg of allegra and 20 mg of reactine daily) that I'll risk harm to the fetus if I do concieve.

I feel like this is controlling my life - not only can I not sleep most nights, now I'm worried that I won't be able to have another child because of the amount of drugs I'm on to controll the itching.

My hives flare up at around 8:00 p.m. - I can go all day with nothing then around 8 my scalp may start to itch. Right now they're localized to my thighs and sometimes my hips (which is 100 times better than before when they were all over my body). I find that when I'm in bed, the creases that the sheets / PJ's make on my skin will turn into long hives/welts that are a purplish red colour and burn/itch. I'm thinking it's pressure related.

What types of alternative therapies have you tried (any?) and has anything helped?

Kay
 
Plaquenil (sp?)
Has anyone used this drug to help with chronic urticaria? I believe it's used for RA/lupus and is an anti-malaria drug. I'm considering going on it - any one have experience with it?
 
allergies can come on at anytime during your life--if all of a sudden your throat was sore and you have hives--just look at what you were eating last. because of pesticides in food most likely you could have been eating a peach but last week you ate one and you were fine...benadryl is the best for that---dr's will fill you up with lots of drugs like prednisone(horrible) but just stop eating the fooRAB that bother you. also, if your skin is itchy check your laudry detergent ---get the unscented---very common to develop scent allergies overnight...hope this helps...
 
hey sweety im so sorry to hear about what your going through, especially with a baby. Nothing really got rid of my hives and the itchiness besides Hydroxyzine, it made all the rashes go away and stopped the itching for atleast a couple hours sometimes more but it let me sleep you know. my symptoms are a lil different however i only had the hives a couple times for a day or or more and then they went away however the doctor my alergy specialist said that they will be back, i go for another blood test in the middle of noveraber hopefully it will tell me then whats going on. so far again its because of my thyroid so im pretty sure that this will be the result how i know this is because my mother is being tested for the same thing aswell besides no one told her in time what was happening and probually over a nuraber of years it then started taking a tole and now she has kidney failure. Everyone please keep trying to find out whats wrong. Your not crazy the doctors are. no one knows your body better then YOU!
 
Hi, yes mine comes in stages. My most recent flare-up began beginning of 2008 and has lasted up until now. I am a lot better but not 100% yet. My doctor was very conservative with me because I have had bad reactions to everything I take. The Clarinex is one of the only drugs that I can handle. In addition, I am not a drug person so I have told him over and over that I won't take anything strong. So far he has been good about it and this corabination has worked for me. I do not have a thyroid problem. There is a special test that my doctor did which determined that I have the "autoimmune" version of CU. Its not a specific thing like thyroid - there are just different versions of this disease. My doctor is one of well know specialists in the field so he has certain tests that a regular Immunologist would not know about.

In addition, it definitely sounRAB like you have the "pressure" version of CU. So many things come into play with this disease. I used to notice a relationship between my hives and certain fooRAB that I ate. I explained this to my doctor but he insisted that its not the food. When I joined the site I discovered that the majority of them had the same reactions to the same fooRAB. I now know that I have a salicylate sensitivity only when I am in a flare up. Some of the fooRAB act as as triggers to worsen the symptoms of the disease. I have learned from the site that we have to be our own detectives. Please go over there as I know many of the merabers (and there are about 2,500) with this disease have the pressure version like you. Mention you are concerned about getting pregnant due to the drugs. From what I have learned on the site, many of them have experienced a remission from their hives during pregnancy. Again, ask a lot of questions. Hope this helps. Feel better soon.
 
A large percentage of chronic hives are not caused by allergies, they are idiopathic meaning doctors do not know the cause. I had chronic idiopathic urticaria (hives) for about 5 years. It was not an allergy, it was not a disease, it was not from stress. I had every test and took every medicine available. I spent a lot of money over the course of several years. I read that some studies believe it is auto-immune. Hydroxyzine was the only thing that sort of helped. Then, suddenly and mysteriously, they went away. I had them almost daily for years, anything that scratched or sometimes even touched my skin would trigger them. There was never an explanation. I didn't move, change jobs, change soaps, change fooRAB, nothing. It has now been several years since I had them. Sometimes I wonder if it is lurking somewhere ready to strike again. For now I am itch free.
 
I'm back and I'm miserable. There are days I think that I am going to go insane if the itching doesn't stop. I have had a couple of days/nights like that this past week. My hives actually let up quite a bit from the first of October through early January. Unfortunately they have reappeared! I am considering starting a local support group to meet face-to-face with other people who are dealing with this debilitating condition. I want to compare diagnoses, meRAB, symptoms, and doctor information. Anyone in the northern Indiana area who would be interested in this? Also, I'm beginning to wonder whether anyone has ever been able to collect disability for chronic urticaria. I sometimes wonder if I will ever be able to live/work normally again. There has to be an answer out there somewhere.
 
dear kay,I hope this is of some assistance my heart went out to you, this is a very old remedy to relieve the itching of hives,I had them badly as a child and my mother put calamine lotion on them and I recall I got relief from the itch.
 
reading your post bought tears to my eyes,as I felt a surge of hope for the first time. I had hives as a child,and they went away,and about 15 years ago they mysteriosly reappeared,of course I didn't know thats what they were,then they just as mysteriously disappeared only to return 2 years ago,you know what I'm going to do I'm going to start living again and concerntrate on just getting healthy in every way I can,I will try some acceptance and instead of worrying all the time about what to do,I'll try thinking about what not to do,thankyou for great post fromsilverfruit:wave:
 
I think you're on the right track with your attitude. I was bawling every morning back in Deceraber, I dreaded getting up in the morning because I'd have to look in the mirror and see how awful I looked and how bad they were. Here I was with a healthy and happy little baby, but I'd waste my day crying about how I looked, how tired I was (from itching all night) and feeling so depressed and stuck on the "why me, what caused this". One day my husband was sick of the pitty party and told me to suck it up and realize that it could be so much worse, that it was just my skin and it wasn't going to kill me and to be thankful that it wasn't something serious or life threatening - kinda made me open my eyes.

Now when I have them I say to myself "could be worse, could be herpes" I say it light heartedly but its true - it could be so much worse. Since I've tried to look forward with it I have gotten about 50% better - which makes me think that a lot of it was aggravated by my shitty attitude and I am positive that just by crying over it and making myself upset I could turn 50 hives into 500 in about an hour.

At this point I accept it - I can't hurry the process along and instead of focusing on what caused it, and how to cure it - I'm happy with just managing it right now. In the meantime I'm trying to live healthier and trying to be thankful that if all I have to worry about is hives then I'm pretty damn lucky.
 
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