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Chronic Urticaria

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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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  • ayda
    ayda

    Posted

    I have chronic urticaria and delayed pressure urticaria where the latter is more difficult to treat. People who don't understand this condition do make sufferers sound like liars but as we know the pain and discomfort is real. Doctors cannot help. How is it that you are not referred to a specialist? Although I do frequent a consultant monthly I am still like a guinea pig. Every body level of severity is different. I recognise practically all the medications mentioned by others because I have been on them at some point. The only medication that has worked in steroids prednisone but as you may be aware this is only short term. I am living in hope that they get it right wiyh me because I am getting fed up with weekly or fortnightly bloid tests I am enduring that make my arm flare up. Stop wasting your time with doctors they are not experts demand to see a specialist. To all fellow suffers keep in contact with your stories as we need to stick together. I don't know any websites or anything dedicated to this and that id what is needed
  • Nikey30
    Nikey30

    Posted

    Hi Lindsay

    I am still drinking 3 pints of water a day with 10/12 drops of alkaline drops in each glass, One first thing in the morning, one around lunch and another before bed. For anyone starting I would suggest increasing this to 5 pints to really cleanse and to start reducing acidity. The water wont taste to good but one can get used to it!

    I make no guarantees, but like lots on here I was prescribed various meds and creams and whilst some helped, none of them cured. I know the water and alkaline drops has helped me as after 5 years of my symptons reoccurring I have been in an extended period of remission and I if I ever start to feel my skin coming up then I take a glass of water with a higher dose of the drops and this seems to calm and bring back to normal.

    One big thing is to try and not drink any carbonated drinks, diet cokes and the like are a big no no when your suffering from skin issues. I used to love drinking diet coke, maybe 3/4 cans a day and then more at the weekend with alcohol. All very acidic and after years of consumption the body just cant neutralise the acid anymore as it uses its calcium reserves, when they are gone the next stage is an imbalance and in lots of people like me this come out in the skin. And its not just carbonated drinks, a lot of food that one would consider non-acidic is in fact highly acidic. A google search will list and may surprise!

    Hope my input helps.

    Nick

    • hanneke54158
      hanneke54158 Nikey30

      Posted

      Hi Nick

      Where do you get the Alkaline drops from?

      I have been suffering daily for 9 weeks now ... it started when I woke to what looked like mossie bites all over my hand then developed to itchy spots up my arm that last for most of the day and fade away late afternoon / early evening. Every day!

      Blood tests and allergy bloods came back clear ... the prescribed anti-histimines don't seem to do anything neither did a course of steroids. I am drinking 8 glasses of water a day and taking plenty of Vit C but no real change ... I think I'd like to try the Alkaline drops, hey, anything is worth a shot, right?

      Thanks, Hannie L

    • Nikey30
      Nikey30 hanneke54158

      Posted

      Hi Hannie

      Feel free to drop me a pm and i will send you details.

      Rgds

      Nick

    • wendy62425
      wendy62425 Nikey30

      Posted

      Hi Nikey

      I've been suffering with the chronic urticaria several times in my life..sometimes lasting a year and a half then gone for over a decade then back again.  This time the Allegra, Singular, etc is not working.  I am finishing prednisone (gladly) and know it just keeps the hives at bay.  My Allergist has recommended Xoliar shot (monthly) as she has seen good results.  Before I try this I would like to try a natural means of healing.  Where do you get your Alkaline drops and how many drops in each pint of water?  How are you doing now?  Is it still keeping hives away? 

      Thank you!

    • wendy62425
      wendy62425 hanneke54158

      Posted

      Hello Hannie

      have you tried the alkaline drops in water? If so has it worked for you?  If so where did you find the alkaline drops.  I'm so anxious to hear how you are. Are the hives gone?

      thank you

      Wendy

    • hanneke54158
      hanneke54158 wendy62425

      Posted

      Hi Wendy

      I did try the Alkaline drops ( bought from Amazon ) and did so daily for about two months but sadly it made no difference to me. I also tried acupuncture but again no change.

      My follow up apppintment with the NHS dermatologist which was due in Feb has now been cancelled by the hospital and rescheduled for June!!! The fenofexadine the hospital prescribed me in November at my first appointment with the dermatologist ( despite me telling him that my GP had already prescribed this and I reacted ) sure enough made the hives much worse! After taking one tablet within an hour I have hives coming out everywhere!!

      I still wake up daily ( since end of June 2014 ) with hands and wrists covered in hives, sometimes elbows and knees too... Then throughout the day these will fade. Terribly itching on either side of my abdomen ... I just don't know what else to do. I can't believe the hospital have changed my appointment.

      It's just so frustrating not knowing what is causing this! All I want is a reason why... I've cut out foods, alcohol, changed detergents but nothing seems to make a difference. I just don't know why I wake daily Witt them and the dermatologist I saw ( who actually wasn't the dermatologist but just a junior i found out from my GP later ) also wasn't interested.

      Sorry for the rant, you only wanted a simple answer. It's just been a bad day.

      I hope you can find something to cure your hives ... Let me know if you do!!!

    • wendy62425
      wendy62425 hanneke54158

      Posted

      Hi Hanneke

      thank you so much for your reply.  I was disappointed to hear that the alkaline drops did not work for you I see that Nick responded and recommended something else to add.

      My recommendation to you is to find a good Allergist / immunologist doctor instead of a dermatologist ......maybe that was a blessings hat your apt was cancelled.  I have a great doctor here in Virginia. She is highly recommending the Zolair monthly injections that are now FDA approved.  She has patients that are doing very well with them.  Before I try them I wanted to try other meds that I heard about. Doxepin 50mg at night and helps sleeping and I was on Dapsone 50 mg.....then upped to 100mg which kept the hives away...life was GOOD until my red blood cells became very low so I had to stop. The doctors need to check on your blood during treatment....unfortunately for me I had to stop.....other patients do well with it.  To build up my blood cells my dr put me back on prednisone for a short time......I'm hive free on that but once I'm off it, the hives come back!  I still would prefer a natural way before trying the Zolair.  I really do recommend that you try to find the allergist/immunologist as they have the best knowledge.  I truly believe that my Chronic Idiopathic Uricaria is caused and triggered by stress affecting my immune system.  We need to heal within.  It is truly a horrible disease....my heart goes out to all who suffer from this.  It is a blessing to be able to connect with each other.  Are you in the US?  Google the Doxepin and Dapsone for information.  Maybe it would work for you.  I probably should have stayed on the 50mg instead of going up to 100. Right now my regular doctor and my Allergist doctor are now talking to each other for caring for me which is nice.  I look forward to hearing back from you.

      Wendy

    • debolite
      debolite hanneke54158

      Posted

      EVERYONE READ....THIS WORKS!!!! Hello all, I am new to the site as far as contributing but have been reading posts for a few months now. I have had hives for almost 6 months now and as all of you know, it is worse than horrible. I have been to my GP, Dermatologist, Urgent care twice and 1 trip to ER in search of answers or at least some relief. I have been unable to sleep during this entire thing except for an hour or 2 here and there. Until last night. A few days ago I read a post from "hives and thyroid" about her cocktail which she swears works. Yesterday I go to the Allergist still looking for answers and my main concern I will be off my 5th round of steroids since January, and I know it will come back very strong. After talking a while she changed my antihistamine to Doxepin. Hmmm, that sounds familiar...I went home and read the post again and yes, it is one of the drugs that worked for her. Singular I am already on. Thats 2 of the 3!!! The other is Zantac..over the counter. I picked up a box and went home and made my cocktail....Singulair 10 mg. Doxepin 25mg. and Zantac 150 mg. I KID YOU NOT GUYS...MY ITCHING STOPPED WITHIN AN HOUR. TODAY ALMOST 24 HOURS LATER, STILL NO ITCH!!!! The hives are slowly fading as well but they dont itch!! It seems that the combination of these drugs hits all the H1/H2 receptor sites to stop the histamine from being released into the body. The Zantac hits the receptor site H2 which it seems the other antihistamines do not. Zantac, who knew??? I feel like a new person. What a relief. Talk to your doctors and get these 3 meds!!!!! I will keep you posted on my progress...Now to find the cause of it   .btw...Zantac (ranitidine) was first developed to be a histamine antagonist, hence it's use, along with other antihistamines, for hives. Good luck everyone, I know you are all as desperate as I am
    • gracie8a
      gracie8a debolite

      Posted

      Hi Everyone,

      I have had this now for 7 weeks and it came out of nowhere. I was feeling so alone and am glad not to feel this way as much as I was. However, I wish no one else was going through this because it is painful, uncomfortable, and a bit life changing at times. I have seen 5 U.S. doctors (allergist, dermatologist, primary care, urgent care) and felt no one was paying attention to what I was saying. I drove down to a Dr. in Mexico and he gave me medications that helped improve my symptoms...however, I still have it. He thinks it is a hormonal imbalance and wants to test my blood but can't until I finish my treatment and wait a week. I'm afraid that I won't be able to last a week without medication because my throat swells up. My face and whole body gets covered in hives and it becomes painful. I am interested in what Nick said about the Alkaline and water, I shall try that too. I will also mention to my doctor about the "cocktail" because I"m desperate to get this cured. My heart also goes out to all of you who suffer this strange disease and I pray that one day there will be a cure/remedy for this. At this point I am willing to try anything. I was told to go see an internal medicine doctor and also a naturalist. If nothing else works, I shall do that. 

      Good luck to all and let us know if you find something that works.

    • marysa
      marysa gracie8a

      Posted

      I'm a 19 year old girl with no known allergies, about 10 months ago I developed Chronic Urticaria. At first I thought it was my laundry detergent, my soap, my cats even but even changing my soaps and keeping my cat out of my room did not help. I became very depressed over this, my entire body would be covered in hives and no matter how many antihistamines I took, it wouldn't stop. I felt disgusting. People, even my friends, looked at me as if I had some horrible contagious flesh eating disease. The more upset I got, the worse it got. My lips would swell up to the three times their normal size, my eyes, my feet and my hands would all swell. After several doctors appointments, I was perscribed Prednisone, and at first I thought for sure I was cured. I was to take them for 21 days, and after that time, my reactions were supposed to stop. Unfortunately, Prednisone gave me horrible nightmares to the point that I couldn't take it anymore and as soon as I stopped taking it, the reactions came back just as bad as before. After several trips to the hospital with severe swelling and my throat swelling up, I was referred to an allergist who would perform an allergy test. Still nothing.

      At our second appointment, she suggested I may not be allergic to anything other than stress. I changed my whole diet, my whole lifestyle just trying to stop these reactions and they wouldn't stop. When this all started, I was going through a rough patch and was very anxious and depressed which I think triggered this. My allergist perscribed to me a combination of two drugs, one is primarily used as a heartburn medication (Ranitidine) and the other is commonly used for asthma (Montelukast). She said she had recently read a study that said the combination of these two drugs would help with my Urticaria. I take 1 300mg tablet of Ranitidine every morning with a 10mg tablet of Montelukast and another 300mg Ranitidine before bed, this is the only thing that has worked for me. I have been taking these two for 6 months now, and if I remember to take them at the same time every day, I don't ever have a breakout. If I happen to forget to take them and have an especially stressful day, I have a small breakout usually around my ankles or wherever I'm warmest, but these two pills have been a miracle worker for me. Once I take them, if I have a breakout, my hives are gone within 15 minutes like they weren't even there

      I feel that my anxiety and stress is definitely a cause here as it is in most cases, I try not to put myself in stressful situations but my anxiety is very hard to control, I feel my Urticaria is the symptom of a bigger problem i.e my anxiety and inability to relax, so currently I'm working on doing yoga and not allowing myself to engage in any overly stressful activity or even watching things like the news or certain types of movies as I get upset easily..

    • rox50851
      rox50851 hanneke54158

      Posted

      Hi. I also suffered from chronic idiopathic angioedema. None of the antihistamines work for me. I tried prednisone and it made my outbreaks worse when I was off of it no matter how I tapered. I tried all of the suggested dietary changes and my angioedema was getting worse. I was missing way too much work and the stress was not helping the situation. I am now on 10 mg Singulair (Montolukast) which reduces leukotrines. I'm also on 10 mg of Doxepin nightly. It's a tricyclic antidepressant at higher doses but has strong H1 and H2 blockers. The only side effect for me is ridiculously good sleep and vivid dreams. After having intermittent angioedema for about a year I have now not had any angioedema for about two months.I hope this helps someone! Best wishes!

  • marsha66275
    marsha66275

    Posted

    I hear everyone talk about drugs to help their condition which can only bring on more symptoms and be very expensive. I cannot afford to buy medicine that might work and then cause side effects later.

    What I have found is that our diet can change our condition. I have recently started reading a book called "The Hidden Plague" by Tara Grant and am checking out her blog. Now I know that she has a different condition than Chronic Urticaria and Angiodema but I have gone to a naturapath for years and when I tried going to the doctor and he didn't have a clue what was wrong with me I decided to stick with my naturapath because she helped me through breast cancer. Al the doctor wanted to do is give me antibiotics and steroids. That doesn't cure it. We have to get to the root of the problem.

    Dr. Bye put me on a regimen of supplements that would help build my immune system back up. That is what is suffering here. That is why it keeps happening. She also looked up a food plan to try that addressed hives, which is what happens when we break out with a horrible red, hot rash that itches and than burns and makes us miserable. Or worse a swelling on our face that causes disfigurement. Look at the book and see what you think.

    Marsha

    • michaela99267
      michaela99267 marsha66275

      Posted

      Hi marsha, ive had this since april been given steriods antihistimines etc keeps it at bay for abit then flares up again, Ive ordered optimal-ph alkaline drops from amazon I havent tried it yet, as ive also looked into the mean green juicing therory look it up on u tube. Mine was al caused from stress and I believe my immune system has broken down so now I'm trying to rebuild it, will give this ago also , my body dont feel so aggitated at the moment,but seeing as tho my dr hasnt got a clue im trying other ways. good luck as I know how depressing this all is 

       

    • wendy62425
      wendy62425 michaela99267

      Posted

      hello Michaela

      have you tried the alkaline drops?  If so did it help you.  Do you still have your urticaria?  I really want to fight this naturally instead off all these harmful drugs that do not help.  I look forward to hearing from you

      thank you 

      wendy

    • wendy62425
      wendy62425 marsha66275

      Posted

      Hi Marsha

      how are you doing using the supplements?  Are they helping your hives?  I too prefer to treat this Chronic Urticaria in a natural way.  Please let us know how you are doing and if the supplements are working.  We have to help each other.

      thank you

      Wendy

    • debolite
      debolite michaela99267

      Posted

      EVERYONE READ....THIS WORKS!!!! Hello all, I am new to the site as far as contributing but have been reading posts for a few months now. I have had hives for almost 6 months now and as all of you know, it is worse than horrible. I have been to my GP, Dermatologist, Urgent care twice and 1 trip to ER in search of answers or at least some relief. I have been unable to sleep during this entire thing except for an hour or 2 here and there. Until last night. A few days ago I read a post from "hives and thyroid" about her cocktail which she swears works. Yesterday I go to the Allergist still looking for answers and my main concern I will be off my 5th round of steroids since January, and I know it will come back very strong. After talking a while she changed my antihistamine to Doxepin. Hmmm, that sounds familiar...I went home and read the post again and yes, it is one of the drugs that worked for her. Singular I am already on. Thats 2 of the 3!!! The other is Zantac..over the counter. I picked up a box and went home and made my cocktail....Singulair 10 mg. Doxepin 25mg. and Zantac 150 mg. I KID YOU NOT GUYS...MY ITCHING STOPPED WITHIN AN HOUR. TODAY ALMOST 24 HOURS LATER, STILL NO ITCH!!!! The hives are slowly fading as well but they dont itch!! It seems that the combination of these drugs hits all the H1/H2 receptor sites to stop the histamine from being released into the body. The Zantac hits the receptor site H2 which it seems the other antihistamines do not. Zantac, who knew??? I feel like a new person. What a relief. Talk to your doctors and get these 3 meds!!!!! I will keep you posted on my progress...Now to find the cause of it   .btw...Zantac (ranitidine) was first developed to be a histamine antagonist, hence it's use, along with other antihistamines, for hives. Good luck everyone, I know you are all as desperate as I am
    • michaela99267
      michaela99267 wendy62425

      Posted

      Hi wendy sorry for late reply. alkaline drops did not work. i went to a urticaria clinic at st thomas hosptital seen dr grattan, there are different types of urticaria mine is symptomatic dermographism urticaria, he has given me certain anithistamines specifically for this, ive only just started, i go back in 3 months. it has been over 2 years now suffering and seems to be calming down which is what this dr says is the time frame for my specific urticaria, i hope these off label antihistamines works so it dont come back with a vengence.push for st thomas hospital in london wendy, they are interested and want to find a way to help us sufferers wendy
    • wendy62425
      wendy62425 debolite

      Posted

      Hello Debolite

      Just checking in with you to see how you are doing with the hives and to see if the cocktail of Singular, Doxepin and Zantac does work?  Please let us know if it does work...have not heard from you in a month.....would be great to know how you are!

      thank you

      Wendy

    • sinead57494
      sinead57494 michaela99267

      Posted

      Hi Michaela,

      Not sure if you will see this but I too glue been to Dr grattan. How are you now? Would love to hear of your outcome.

      Sinead

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