Chronic spontaneous urticaria

Posted , 10 users are following.

hello all.

im new to the forum and posting because im seriously have no hope.

i hadnt even heard of this condition until i was diagnosed four months ago.

so summer hols in paris during the 40 degree heat, but weve been hotter places, and several insect bites, to which i always have a reaction anyways. anyway all ok had small rash under the skin which didnt even look like urticaria from the heat but that vanished within hours.

so we return home and get stung again this time on my arm by some unknown bug then carried on with usual summer, swimming etc, then 15th august everthing changed.

covered in a rash all over my thighs.

went to gp who said it was urticaria and to take some antihistamines and it would clear it.

it didnt .

sure enough the rash appeared every morning and would fade by lunch. then it stopped fading. i have the rash permanently in some form or other. the wheals will fade but new ones appear all the time.

i was referred to immunologist who just told me rather frustratingly that it appeared to be idiopathic as it was appearing everyday and just to take antihistamines and to re refer if the antihistamines didnt work.

sure enough i was re reffered and have started on the xolair but it made no difference although its been only two weeks but i have read people received instant relief. has anyone found ot took a delayed response for them to work?

i am taking antihistamines every two hours and am currently on my 9th steroid tablet to reduce the urticaria but nothing is workingn.

previously the steroids worked after two days.

so sorry for the long rant but i dont know what i can do living with this every single day.

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  • Posted

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    • Posted

      hi Michelle

      it may have nothing to do with the insect bites, i struggled for years with this problem,

      i found not eating soy products help with everything

      everyone is different but worth a try also

      soy is in everything so it is hard, but even helping to stop 75 % of what you ate getting now will makea big difference

      good luck

      Sean

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    • Posted

      thanks sean.

      youre right but im just trying to find out why its started as thats terrifying too but the immunologist told me it was pointless and i wouldnt find a cause.

      another dr told me that it would have to be a few different things together to align.

      ive stopped the steroids now as they werent helping so will see the state i get in in the next few hours.

      sean how long did your flares last? and once settled did it return after a time?

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    • Posted

      I took steroids that only ever worked for first few days and they gave me a bad temper also

      i still get flare ups due to soy is in everything so hard to completely cut out, but they do not last as long and nowhere near as bad, dont really get the face flare ups anymore and dinner plate size hives on torso are rare.

      the less soy products i eat the better it gets

      i tried taking eggs, soy and msg out of my diet and got great results

      Some chickens are fed soy so that doesnt help either, if you get results , add one back a time time and write down how you feel and symptons ,

      soy can be in anything from bread to sauces so do your research ans see how you go

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  • Posted

    Hi Mic,

    I am suffering from severe urticaria with angioedima . earlier i was also struggling same like you everyday.

    i was referred to different doctor and to have a different medicines & steriods ..but nothing was helping out ..

    Atlast , when i was prescribed to have folitrax and goutnil (colchine) then i started getting better..bit still the problems has not gone completly..but it is reduces..along with Allopathy medicines i m also taking homeopathy medicines...

    in 2018 i was admitted many times becoz of this urticaria ..

    my body used to get swelled ..n all over body rashes itching pain ..swelling used to occur internally as well as externally ..i was not able to breathe also ..imageimage

    u can c the difference in pics .

    it was really life threatening for me

    .

    i would suggest you to have a homeopathy medicines also

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    • Posted

      thank you so much for the reply.

      yes i have the facial swelling too.

      i have been to hospital twice and as soon as you mention you are under specialist all they are interested in is whether it is life threatening at that moment.

      i will look into the drugs you mention.

      did you ever find a cause?

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    • Posted

      yea dear it was life threatning for me at that moment because my mouth , stomach

      windpipe internally everthing was swelled ..sue to which i waa not able to breathe ..from 2018 to till now i just keep noticing while eating what is reacting me like i cant have sour things ,dairy products ,dry fruits ,tomatoes ,fermented products etc ..whenever i have these i get swelling rashes ..

      so i take care in all these ..

      stress also affects .

      i eat simple food not spicy ..

      i have stopped eating many things dear..

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    • Posted

      but im much better now since i started having medicines which i mentioned earlier ..

      i dont know whether you are aware of homeopathy medicines..

      im having both allopathy as well as homeopathy

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  • Posted

    The important thing is to not panic and loose hope. If Xolair doesn't work after a few shots, then can try a number of immunosuppresants (Ciclosporin, Mycophenolate, Methotrexate, Dapsone) and something will work. Antihistamines didn't work for me either, but some immunologists recommend quadruple dose fexofenadine (Allegra). Both Ciclospoin and Mycophenolate worked for me, when antihistamines didn't. Side effects were not so good for me though, so worth persevering with Xolair if they are offering it.

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  • Posted

    thanks so much for the replies .

    i have to say a big part is worrying as to why this is happening?

    im panicking thinking there is something sinister going on etc ..

    so much to contend with what with the worry that the professionals are missing something and the daily rash it isnt any wonder that on my worst moments i have thought about ending it all

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    • Posted

      I'm really very sorry to hear you are going through that. I was like that in the first yet, the mental anguish was hellish. The stress and anxiety it causes is hard for other people to understand. In the first year, I was on the tricyclic anti-depressant Doxepin. That helped with the high anxiety and insomnia from the itching and actually reduced the hives too, since it is a very strong anti-histamine. Not sure I could recommend it (or Atarax) though, since I felt like a zombie with the sedation. Later they tried SSRIs. Actually, that reduced the itching sensation and reduced the anxiety. Later Gabapentin really helped the itching and anxiety / stress and insomnia but without such heavy sedation as those above. It's useful for the kind of neuropathic itching (and pain) that goes with hives. Getting therapy with someone experienced in dealing with patients suffering from serious chronic pain/illness is useful too as it is hard to accept this distressing and debilitating illness. Especially when sometimes most doctors, friends and family don't really understand how bad it is. If you get to manage the stress and anxiety and find symptomatic relief, that is more than half of the battle with hives won.

      It can initially be very hard to accept that modern medicine just doesn't understand the causes of urticaria at all well and rarely is a cause found. I went through a year or more of being very anxious and driven toward trying to find a cause and cure. That didn't help me much, since usually people don't find that. But, in time, I learned that the symptoms can be managed so that you are much more comfortable. It's a lot of trial and error with treatments for some people. And counselling or therapy and other kinds of self care can help in dealing with the illness. Try not to forget that it is usually time limited, not usually a lifelong illness.

      And I take fexofenadine four times a day for the hives, though that doesn't help as much as immunosuppresants did.

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    • Posted

      thanks desmond your words really helped.

      its a struggle looking at statistics.

      i too have been suggesting treatments to the specialists having trawled through journal after journal.. mich to their anguish i feel.

      but what works for most dont work for some, and currently i am within the 'some' category.

      all the percentages of success stories from medical journals i have read with various antihistamines, the steroids, xolair etc.. at the moment i havent found much help in modern medicine.

      its just the nightmare stories where people end up with flares for 20 years etc, as i say these four months have been the worst of my life.

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    • Posted

      Yes, sounds similar to me. If you are an intelligent, driven person it is hard not to research and experiment endlessly trying to find a cause, to find a cure. A better way to look at this illness is that it is more like Lupus, RA, Crohns, or something similar in the autoimmune disease family. And unfortunately, maybe because it doesn't kill so many people and medicine underestimates the mental torture it is similar to chronic pain conditions. However, the important thing is that it is not like many of the above in that it is usually time limited, even if can last years. Rarely a lifetime condition. Also, there are more medicines that can treat it, compared to some of the above. Mine has lasted 7 years, but don't let that worry you, since cold urticaria is the one that tends to last the longest and is most poorly understood. With most urticaria it's rare to go on longer than a few years and lifetime flares is rarer again. But actually, after the first few months I started to adjust and find treatments. In last couple of years, with proper treatment, I've stopped even thinking about urticaria that much. The worst part of urticaria for me now is probably some lingering fatigue and maybe tiredness due to the medication.

      The first couple of months of mine were the worst of my life too. I was really at my wits end. Curled up and just wanting to die. Part of me hoped blood tests or scans would show it was some kind of fatal systemic disease like Lymphoma so at least it would be over. BUT, once I got some treatment that helped through much trial and error, things got much better. Even if I didn't find a cause or cure. In time, I learned to stop looking for causes and cures and focus on improving the symptomatic relief. Some of those improvements were through psychotherapy and meditation. It can be worth looking at the work people like John Kabat-Zinn have done in helping patients deal with chronic pain. There are more similarities than differences in the mental suffering urticaria causes. Bad as the physical suffering is, the mental anguish is the greater pain and that can be dealt with through psychological approaches. I know that can seem like an inadequate outcome, but actually you can reduce the suffering of urticaria by half of more by working on the psychological suffering aspects. That includes, obsessing, worrying, ruminating, stress, anxiety, panic. It's very hard not to go into a tailspin with urticaria, because it is so upsetting. You're not the only one, and I think doctors, immunologists, dermatologists would do better if they recognised the anguish it can cause.

      I've actually found that something like chronic fatigue syndrome can set in with a long-term illness like that. So more rest and sleep and relaxation time are good for that. Also helps de-stress it, if you are well rested.

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  • Posted

    Michelle, I am so sorry! I have dealt with this for years and your photo looks so painful. I get urticaria on my whole body. Did so many tests, ran out of ideas and decided to try a dna test. That test led me to the source of my skin reaction. Hope you feel better!

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