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    Old 08-26-2004, 08:47 AM   #1
    genster
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    Unhappy severe chronic urticaria

    I have been suffering from very severe hives for months now... it started as pressure uritcaria in the winter, but now has become chronic hives. I wake up every morning covered in welts, with swollen eyes & lips, looking like one of Dr. Frankenstein's failures. I have been on hydroxyne, singulair, ranitidine, and prednisone for the hives, and on flonase and oxeze for sinuses and asthma. My purse looks like a portable pharmacy. While I have hives, my asthma is great! Not a wheeze! Nothing seems to help get rid of the hives, except large doses of steroids, which I don't want to take. I have had allergy tests, which showed a mild reaction to moulds and fungi, and to camels and flax (not many camels around this area!). I told my Dr. to either cure me or shoot me. So far he has done neither ! Pretty soon I am going to be found in the corner, with all my skin scratched off and my mind in a hopeless fog from all the drugs. Any suggestions anyone?

    Last edited by genster; 08-26-2004 at 09:07 AM.

     
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    Old 08-26-2004, 11:12 AM   #2
    Trail Rider
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    Re: severe chronic urticaria

    My friend had the same thing for many years, turned out she was allergic to aspirin! Once she stopped taking any aspirin preparations (alot of medications contain it) they went away. Have you considered a food source for your allergies?

     
    Old 08-26-2004, 12:35 PM   #3
    genster
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    Re: severe chronic urticaria

    I am beginning to wonder if there isn't something that I am eating... perhaps I have a gluten allergy, or something. Because of the type of job I do, I often eat on the run or grab something quick - usually some type of sandwich, although I have pretty much cut out potatoes, and don't eat read meat more than once a month. I do eat a lot of fish. My fear is a gluten allergy, as it would make it pretty near impossible to find food that was readily available (not sandwiches) out here in the middle of nowhere (I live in a very rural area, with a population of about 50 - not counting the neighbours pets). Does anyone know the symptoms of gluten/food allergy? I know they vary withthe individual, but is what I am experiencing within the realm of possibility for them? I first started with the severe hives 18 months ago, when I moved into a new apartment. When I moved out, they gradually got better, to be replaced in the winter with pressure urticaria. I moved again in October, and since the beginning of summer they are back, full force. I don't go in the sun, I don't spend a lot of time outside. It is getting worse and worse - adn in my job I have to meet the public, which frightens them when I look like the latest plague victim! Thanks for any and all suggestions, I am hopeful that someone will be able to help - even if it just lets me know I am not crazy.

     
    Old 08-28-2004, 02:53 AM   #4
    basilisk
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    Re: severe chronic urticaria

    Genster, I hate to tell you this but the same exact thing happened to me for a year! I cut my diet every which way to try and find a cause. EVERY morning I had hives all over no matter what: I even got them when I was travelling which proved my animals weren't causing it and it wasn't my living environment. I had these hives from approx. december 2002 january 2004. The good news is that NOW, the morning hives have stopped! I no longer wake up covered in hives, they just seemed to gradually fade with less and less every morning.

    I know how totally frustrating it is to wake up every single day with hives. I never found out what caused it.

    The bad news? For the past year I have been getting excercise and heat induced rashes that I never got before. Amazingly, these have started to fade and guess what? Now I have a bad case of Dermographism which is hives that result from rubbing or scratching on the skin.... It seems I am going through all the phases of hives... All I can say is hang in there.

     
    Old 08-30-2004, 07:05 AM   #5
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    Re: severe chronic urticaria

    I have the same thing......pressure hives now mostly but have found a better medicine that has done wonders. Sulfasalizine. Not sure why it works but it does. I have tried all the other meds too.
    You can read all my posts on here by clicking on my username here and then the dropdown window that says read all posts by me. I don't have time to write much now but you can look at what I have written in the past.
    You are not alone either but you will survive. I have put in countless hours doing research on hives and I know how ya feel. It is embarresing to have red wealts all over you body and it is painfull too. Makes you not want to wake up and look in the mirror. I don't believe it is an allergy to anything either. Just your histamine in overdrive for no good reason.

     
    Old 08-31-2004, 06:54 AM   #6
    genster
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    Re: severe chronic urticaria

    thanks for the response. I feel less like I am living in some sort of twilight zone knowing that others have experienced the same thing. I have read some of your posts, Hairdoer, and have been lookning for some information on the drug you recommend. My concern is that I am allergic to ASA, and am reluctant to take other NSAIDs, as a pharmacist friend of mine has suggested I avoid them if at all possible. I have asked him about the drug, but he hasn't gotten back to me yet. Thaks for the info, though. I will keep checking.

     
    Old 08-31-2004, 05:22 PM   #7
    PandaPaws
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    Re: severe chronic urticaria

    You may be interested in my posting in the Rare Disorders board. I had the symptoms for delayed pressure urticaria for nearly 20 years. I seem to be able to avoid these symptoms by eliminating my exposure to FD&C Yellow Dye 5. Reading the postings of others reminded me that, although it was the delayed pressure urticaria that bothered me the most, I did, on a few occasions, have the symptoms of solar urticaria and cold urticaria. Fairly frequently, I also had spots on the palms of my hands and more conventional hives. All of these symptoms seem to have stopped now that I have learned to avoid Yellow 5. I hope this helps you.

     
    Old 08-31-2004, 09:58 PM   #8
    PATRICIA123
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    Re: severe chronic urticaria

    I know how you all feel, I have had chronic Hives since March of this year. I get then as soon as I go to sleep and they go away a few hours after I wake. All allergy test are neg. I am on Pepcid and Doxipen. they control it most of the time, but I have some break thru hives every day, I have taken to getting up in morning and stripping clothing off to see where the little *******s are today. I am always tired, I wish someone could tell me why? my new quote is "Just shoot me now" Because having Hives is the worst. Patti

     
    Old 08-31-2004, 10:02 PM   #9
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    Re: severe chronic urticaria

    Hi, I also have hives on my palms. FD&C yellow dye 5 Can you tell me some of the foods or products that typically have this in them? Thanks Patti

     
    Old 09-01-2004, 07:33 PM   #10
    PandaPaws
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    Re: severe chronic urticaria

    I am happy to tell you what I've found with respect to figuring out whether a product contains Yellow 5. Reading labels is the best way to identify products with Yellow 7. Searching on "Yellow dye" or "tartrazine" or "Yellow 5" on the Internet has helped me as well. Some alcoholic products have Yellow 5, but, at least in the U.S., there is no requirement to indicate this on their labels. Of course, it is harder to spot food with Yellow 5 at restaurants or eating at a friend's house. After eating at a Memorial Day potluck, I had to remind myself to be more careful. Some fast food restaurant websites identify menu items that may contain Yellow 5. Sometimes products are recalled and manufactureres are fined by the FDA for not revealing the presence of Yellow 5.

    Here is a list of some of the products that purportedly sometimes contain Yellow 5: vitamins, calcium supplements, other over-the-counter drugs, prescription drugs, mouthwash, touthpaste, alcoholic products, cocktail mixes (e.g. margarita mixes), mustard, pickles, cheese, processed shrimp and other shellfish, macaroni and cheese, bakery goods, candies, cereal, ice cream, gelatin, cookies, dried fruit, butter, margarine, pasta, gum, cold cuts (lunch meats), fruit drinks, jams, jellies, hot dogs, sausage casings, maraschino cherries, aqueous drug solutions, eggnog, curry dishes, cookie decorations, lozenges, and cosmetics. It is also in animal feed.

    Yellow, green, and pastel products are potential sources of Yellow 5. Some golden, white and clear products have Yellow 5 as well. A type of refrigerator roll lists Yellow 5 as an ingredient. A fast food restaurant website indicates that their vanilla milkshakes contain Yellow 5. Some Vodka's supposedly contain Yellow 5. Once I saw Yellow 5 listed on the label for a raspberry flavored dark chocolate candy bar. I have not been able to confirm this, but, supposedly, Yellow 5 is sometimes used to process shrimp (note their pastel pink color) but somehow the shrimp avoid the Yellow 5 label. Be sure to check the label on your vitamins.

    Although this list looks extensive, many products in these categories do not contain yellow 5. Yellow 6 does not appear to trigger my hives.

    Eliminating Yellow 5 from your diet may not clear up your hives, but it appears to have worked for me. Good luck!

    Last edited by PandaPaws; 09-01-2004 at 08:44 PM.

     
    Old 09-02-2004, 12:36 PM   #11
    genster
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    Re: yellow 5

    Wow, Pandapaws, you leave me stunned! I have had hives on the palms of my hands -how aggravating is that??!!- along with just aobut everywhre else. i have had all the allergy tests that can be done, but only show a slight reaction to moulds and fungi. Would a sensitivity to a food dye even show up on these tests? Not the scratch test, but the blood test? i have had the suspicion that it is something I eat, but can't pin it to one culprit. After three months of suffering, this past Monday I woke up almost -not totally - but ALMOST hive-free. I could have done the dance of joy; in fact, I buzzed around at work so much that my boss even commented. The hives have, for the most part, stayed away so far, and it has been my best week all summer. However, I have also been eating a lot of salad lately, avoiding many prepackaged food. I have to go home now and read the labels on the stuff in the cupboards...judging by the list, it could be a lot of reading! Thanks for sharing your research with us. I am really glad I found this site, where so many people are willing to try to help others. Even having someone who knows you aren't imagining your allergies and understands the effects they have is a great help.

     
    Old 09-02-2004, 10:03 PM   #12
    basilisk
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    Re: severe chronic urticaria

    genster, i would be interested in seeing if you go into 'hive remission' after stopping yellow 5 or some other food, since I had the identical symptoms you had for about 18 months before they disappeared. Would be good to see if there really was a cause!

    And its official, my heat induced hives are now gone! Even the summer desert heat has not brought them on. Of course they have transformed into scratch and rub sensitivity now

    Has anyone ever had hives that shift to different symptoms/causes like mine?

     
    Old 09-04-2004, 09:49 AM   #13
    PandaPaws
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    Re: severe chronic urticaria

    Genster (and anyone else who may be reading this note), I echo basilisk's interest in hearing back on whether avoiding yellow 5 helps you. It may also be helpful to others, if you keep track of how long it takes to clear up the hives.

    I've been trying to think of any other tips that might help. You may want to consider avoiding FD&C Red Dye #40 as well. If you are going to all the trouble of reading labels and restricting what you eat, you might as well avoid red 40 as well. According to information on the web, yellow 5 and red 40 have a similar chemical structure and both have been associated with hives. Also, when I think back to the vitamins that I was taking in the 1980's, when I started having problems with hives, they may have been red. By the time I started avoiding yellow 5, I was taking the women's version of this vitamin and it had yellow 5.

    If you eat at any fast food restaurants, I would encourage you to go to their web sites. I haven't looked recently, but I remember that I saw some pretty strange things. For example, the buns of some of the sandwiches had yellow 5 and others didn't. It is annoying that some breads may have dye in them. At one web site for a fast food chain, I saw that a vanilla milkshake had yellow 5.

    Although I am not advocating drinking alcohol (or abstaining for that matter), the lack of labeling on alcohol may be a problem as you try to detect the effect of yellow 5 (and maybe red 40) on you. More expensive products may be less likely to have yellow 5. I've never had a problem with red wine. (Maybe some wines have red dye.) I have had a problem with at least one white wine and one beer. I didn't get hives after drinking a regular Budweiser and a Sam Adams. I'd stay away from the colored hard liquors and the liqueurs while you test out your reaction to dyes. I saw one list that indicated that some clear liquors like vodka have yellow 5.

    Good luck.

    Last edited by PandaPaws; 09-04-2004 at 10:13 AM.

     
    Old 09-04-2004, 12:19 PM   #14
    genster
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    Re: severe chronic urticaria

    The hives have been pretty good this week - only a few blotchy bits here and there. Not completely hive-free, but much better. Pandapaws i do not drink, except maybe 1 ounce or so of dark ale, or maybe a cocktail once or twice a year. I get all stuffed up and sneeze if I drink any more than that. Also, I do not eat at fast food places very often. I live in a rural area, we don't have any restaurants here. Just one little country store with a gas pump, and they close by 9 pm! It isn't the place for a wild night life. The only pre-fab foods I eat really are tinned soups, and sometimes non-cola soda pop; although I am a potato chip junkie. I have even stopped buying chips, though, as I thought it might be the chemicals in them. It hasn't made a real difference, as far as I can tell, as I had some chips when I was at a neighbour's place the other night, and no effect. I have been checking labels, though. It is frustrating, as some foods just list colour, and not what dyes they used. I do believe you may be on to something with this, though, as I can come up with no better explanation. As I mentioned, the blood test came back negative, and there were food gorup tests included, but I doubt they test for he dyes, do they? Anyway, thanks for the sugestions, everyone. It is a great help to know that other ppeople have been through the same situation.

    Last edited by genster; 09-04-2004 at 12:21 PM. Reason: spelling

     
    Old 09-04-2004, 12:25 PM   #15
    genster
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    Re: severe chronic urticaria

    Just re-read your post, pandapaws, and remebered once taking multivitamins thatmade me physically ill - even the smell of them. They were dark red in colour, but I don't recall the brand. It was many years ago, though. Don't know if there is a connection, it just reminded me.

     
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