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Chronic Urticaria

Posted , 75 users are following.

Little_Flower
Little_Flower

Hi I hoping I might get some information on this condition as my GP knows very little on the subject.

I'm a 30 year old mother of 2, I live in Derry, N.Ireland. This is not my first time having chronic urticaria, 7 years ago i had it for 5 months and then it just went away. At the time i was told by dermatologists that it was more than likely the pollen, which i found very odd!!! I've never had hay fever or been allergic to any thing before in my life. I have now had chronic urticaria and angioedema for the last 11 months and it's showing no signs of improvement. I'm having very little luck with antihistamines and am put on steroids every 4/6 weeks, starting at 40mg and working down over a 3 week period. No allergy can be found, my bloods have all come back normal. My skin is covered there is not one piece of my body not affected and it is sever at all times day and night. I have had to go to A+E with sever swelling of the lips, eyes and mouth. I actually have hives on my eye balls!!!! My joints are now starting to swell and in the last week I have been unable to drive due to swelling of the back and neck. Stairs are becoming a real problem because my skin around my knee joints swell so bad i look like an elephant, the skin is very red, warm and painful. I desperately need help I'm finding this very difficult to cope with and family and friends are tired listening. Every time i go to my GP he shrugs and says \"it's awful but there's nothing i can do\". When i can appreciate that this is difficult for him to know what to do i feel like I've been put on the back burner. Dermatology in Derry refused to see me this time saying \" we don't deal with chronic urticaria\", with that my referral was sent back to my GP.

Any help or advise please.

6 likes, 133 replies

133 Replies

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  • marsha66275
    marsha66275

    Posted

    My urticaria began with a bite that I got in the woods while hiking. I don't know what it was a spider or something. I have had swelling on my face or red itchy burning welts on my body that feels very painful like shingles. It's been miserable. This past week is the first week that I have been symptom free regardless of what I eat.

    I have been on a food plan given to me from my naturapath that was pretty helpful but if I varied from it even slightly I would have a reaction. She has had me on supplements that would boost my immunity system. I have had people pray for me continuously and just this week I have not had any reactions on any part of my body. It's been months since I've been symptom free.

    Thank you for sharing and I will remember the alkaline drops. That's something I haven't tried. I will let you know if my symptoms are gone permanently.

    Marsha

    Marsha

    • jennifer64142
      jennifer64142 marsha66275

      Posted

      I've had hives and face swelling for two months since i went on a fishing trip!

  • amanda87310
    amanda87310

    Posted

    Hi All

    Thanks for sharing your stories, it's good to know I am not alone.

    Nick - I am very interested in your Alkaline drops and water. Can you tell me how much water in the day you drink with how many drops of alkaline and where you get the alkaline from. I really want to give it a go.

    Thank you

    Amanda

  • tanya26235
    tanya26235

    Posted

    I would love to know more too NIck about the alkaline and water treatments that you are doing. I have had this chronic urticaria for five months now... and I also have angiodema with it as well.. very uncomfortable, and frustrating... please anyone.. help!

  • mikemcg93
    mikemcg93

    Posted

    Hello everyone

    Im 20 years old and have had Chronic Idiopathic Urticaria & Angiodema for about 5 or 6 years. I was very frustrated at first but it has calmed down quite alot.

    I have been hospitalized with it before because my throat and tongue swelled up and I had to go to hospital and have a needle( I forget the name of it now). I believe mine was bought on by stress as I moved to Ireland a year before I got it and I didn't enjoy it there. However I have been back for 4 years now and it is still on going. I have had blood tests but nothing was found and I was told basically there is nothing they can do and to live with it.

    I have been on medication since the start, I think the thing people need to realise is the medication doesn't make it go, it just controls it. When I get these attacks they can be very severe. I get swollen feet, eyes, lips tongue, hands everywhere! I have also realised lately the cold can bring it on, if I bang by hand the next day it will be a swollen rash. Anything can bring these on. I will list the medication I am on daily, this medication has dramatically helped the control of this.

    In the morning:

    15mg Levocetirizine

    150mg Ranitidine

    In the night:

    10mg Montelukast

    150mg Ranitidine

    25mg Hydroxyzine

    If anybody has anything to add about the medication I take or any questions then just ask.

    • alonzo04458
      alonzo04458 mikemcg93

      Posted

      Hi I was wondering does anyone of your symptoms come on when you get hot? Try to work out? Get stressed,nervous, or even too excited? How often do they happen besides being hot and itchy do you feel a very painful stinging sensation? If so please let me know because these are my symptoms. I itch only before I go to sleep but that's not the bad part. It's the intense stinging what gets me
    • wendy62425
      wendy62425 alonzo04458

      Posted

      Hi Alonzo

      Heat does seem to make the hives worse....its best to avoid warm or hot showers.  My hives seem to be brought on by stress affecting the autoimmune system.  My chronic urticaria started in July during the summer......also if you get too much sun you can break out....Yes the hives are very uncomfortable...if not medicated, sleeping is difficult..sure hope someone will find a cure for this. Have a good day

      wendy

    • alonzo04458
      alonzo04458 wendy62425

      Posted

      So how long have you had it now. And what medications do you suppress it best. Also what do you mean by "uncomfortable" can you try your hardest and further explain I know it is hard to describe but please let me know because I have yet been diagnosed

      Thank you

    • wendy62425
      wendy62425 alonzo04458

      Posted

      I have had them this time since July.  I have had them two other times in my lifetime both lasting over a year then they go away.  I use to be able to control them by taking Allegra and Singular but this time non of the antihistamines work.  Prednisone is the only med that works but it's not good for you long term...and when you get off it the hives come back worse.  There is a new monthly shot out called  Xolair that is suppose to be good....you may be able to keep them at bay just using the antihistamines.  My uncomfortable is very itchy...hard to sleep when you have itchy all over. Hydroxyzine helps and helps you sleep.  Also Doxepin at night is good.  It's an antidepressant but has antihistimine in it so it helps. I wish more would post...there haven't been too many lately....hopefully it's because the hives are gone for them.  Some drink a lot of water.  Fruits and veggies are good.
    • wendy62425
      wendy62425 alonzo04458

      Posted

      You need to go to an Allergist/immunologist doctor as regular GP doctors don't seem to know what to recommend.
    • alonzo04458
      alonzo04458 wendy62425

      Posted

      Thank you so much you've been great help and yes more people need to be aware of this
  • tanya26235
    tanya26235

    Posted

    Hi Mike,

    I am on Allegra two in the am, 150 mg ranitidine in the am, and as of right now, 20 mg of prednisone in the am.. in the pm, I am on two reactine, 150mg ranitidine and as of right now, 30mg of hydroxyzine, but she told me that I can go up as far as 200mg of the hydroxyzine if I need too...I was taking benedryl and they told me to stop that and take the hydroxyzne instead.. (which I dont find does much for me except makes me sleepy...) May I ask..what is the Montelukast? Is that an immunosuppresant?

    I am so frustrated with all of this!

    Tanya

  • mikemcg93
    mikemcg93

    Posted

    Hello Tanya

    From what I know Montelukast is used to treat people with asthma but it was prescribed to me when i first got urticaria 6 years ago and my medication has never been reviewed. Ive read online that it is useless in treating people with urticaria. I know its very frustrating, how long have you had it? maybe this isn't advised but it works better for me...if i have an 'attack' instead of take 15mg of levocetirizine i take 45mg and instead of 150mg raniitidine i take 450mg so i just triple my morning tablets on the days i have an attack. If you have only been on hydroxyzone for a short time then youll be glad to know that sleepy side effect goes away within about a month. I had it terrible and felt like i had a hangover which was horrible having to be out my house for 6 o clock for college. If you want to know anything else just ask.

  • Nikey30
    Nikey30

    Posted

    Hi All

    Interesting all these comments and the various meds which are prescribed, I was only ever given prednislone when my reactions were really bad and I felt all these did were supress the issues and once they were stopped the problems would re-occur.

    I am a firm believer that these issues happen because of an imbalance in the system- this can be caused by any number of things, Mike mentions stress and I for one know this was a cause for me, easy when people say don't get stressed but more difficult to put into action!

    So what we need to do is rebalance the system- I believe urticaria is one issue which comes from an autoimmune disorder, the body is tangled up and fighting itself because it thinks its under attack. So when you get stung by a bee, the area surrounding the sting swells, this is largely due to the histamine the body releases to ensure the sting area is dealt with.

    In the case of urticaria and angioedema the body is thinking its under attack on a much bigger scale than a bee sting and as such releases huge amounts of histamine to combat invaders that just aren't there.

    Now I am no Dr but I truly believe the amounts of chemical we ingest thru the air and thru our food could becausing these issues and what we need to do is work with our systems to assist and reset. This doesn't mean going on any strict and crazy diets but just being careful on what we are putting into our systems.

    Happy to answer any q's and comments.

    Nick

  • lindsay86490
    lindsay86490

    Posted

    Hello,

    I've had the same symptoms that everyone here seems to be describing, itchy rash or hives and sometimes swollen lips and eyes. I first had this about 3-4 years ago and it occurred out of the blue, I went to probably about 10 doctors total including mutliple specialists: allergist, dermatologist, immunologist, everything! All of my tests came back normal, they could find nothing that may be causing these hives. (Apparently it is very common to have chronic urticaria and in almost all cases a cause is never determined.) I also tried allergy injections, an allergen free diet for a while and changed all my detergents, soaps, deoderant to all natural allergen free products and none of that helped! They first started me on a bunch of prednisone and benadryl but similar to everyone else it really didn't help completely and it was only a temporary fix. After a full year of daily hives from head to toe they went away, it was a miracle! I had a year free of hives and then tragically they returned again in April 2013 and I've had them since then. The one difference this time is I found a new doctor who prescribed me the best "cocktail" I've had so far with the best results. I've had WEEKS without any hives what so ever and they are vastly improved! So much so that I've started tapering off my medications to fairly positive results. This is what I was taking:

    In the Morning:

    180mg of Allegra (fexofenadine)

    150mg Ranitidine

    10mg Zyrtec (cetirizine)

    100mg Dapsone (**This was the major new one for me, no one had every tried this before but my new dermatologist had seen really good results in the past and so have I)

    In the Evening:

    180mg Allegra

    150mg Ranitidine

    10mg Singulair (montelukast, this medication is typically used for patients with asthma and allergies but it is in essence an similar to an antihistamines. It is a leukotriene inhibitor, so it helps to stop some histamine production)

    50mg Hydroxyzine

    At this time I am only taking the Dapsone 100mg and one allegra tablet in the evening, I was able to cut back on almost all my medications. I am so happy with the results I have experienced and if this helps anyone at all I'm happy to share it.

    Despite my outcome I was still never able to determine why I was getting these hives, and I was intrigued by Nick's suggestion of the alkaline drops. What kind of ratio were you using? How many drops per how much water and how frequently were you doing this??

    Hopefully this helps!

    -L

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