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Does anyone have anything new to help with this horrible disease?

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  • Posted

    Hi Kathy what have you tried so far? If you can remember as I know we have all tried a million types of medication x
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  • Posted

    Kathy did you ever check for h Pylori?

    I'm finally getting better. I had hives starting two years ago. Was just hives and antihistamines worked then eventually worse. Fatigue and anxiety came along with it.  Found out I had h Pylori and had to take antibiotics to get rid of it.  Found out the hives were from my damaged gut. I took probiotics but most recently found out it just prevents healing. Finally I threw out everything and starting eating more clean. No alcohol caffeine etc. Easily digestible foods. No corn. I still have to watch what I eat but barely any hives now. 

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  • Posted

    Is it a disease? I feel I have to carefully explain my current bout of urticaria as I feel (maybe wrongly) that people might think it's catching!

    As for treatment I'm only in week 5 since the start this time. I was on steroids but just tapered off them. I tried last weekend and it got worse. This time I hope I can do it. Otherwise I take a antihistamine 3 times a day plus in the morning 1 ranitidine (Zantac ).

    I have Idiopathic Urticaria, no allergy, no known cause, last time just stopped after about 7 weeks. So hoping soon over it.

    What are you taking? Are you in the UK?

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    • Posted

      I have taken antihistamines, steroids, methotrexate, ranitidine, montelukust, tried various diets but like you mine wasn’t allergy related. So now currently trying xolair injections which is two shots, one in each arm per mo th for six months. I’m currently having my second injections on the 26th March. My dermatologist has told me she has had patients who have had this illness for 20 years and they have been completely cured. So I’m praying this works for me. Yes I live in the uk so the summer will be my test as heat really does make mine Go crazy. I have to say far I have had no side effects apart from being more tired than usual, but saying that my urticaria shatters me at the best of times. I’ve had no swelling or joint pain. So crosses fingers I’m on the right path. This site is where I found out about it and have read many good reviews so that is why I asked my dermatologist about this drug. It’s worth trying it out but I have no idea how much it would be for a course if this if you have to pay for your health care. Which is where I’m very thankful in the uk it’s free. They have told me I had hit a certain criteria which was a score sheet of how many hives, the severity of it etc to qualify for it. This is because it’s expensive. If it’s at the point all has failed please give it a try. It’s appears to be the best success so far I have heard. My urticaria is chronic idiopathic urticaria and also chronic delayed pressure urticaria so I’m up for trying anything that would help. It’s a catch 22 this illness as you get so down with looking all lumpy and not sleeping and they say stress is a huge factor, but it makes you so depressed because you can’t live a normal life. There has been times I’m unrecognisable with the rash completely all over me from head to toe and extreme swelling in the face that I can’t see, or hear very well and the skin between my lip and gum has split through my lips being so swollen. I have two children and it’s has frightened them with the way I look. Going out when I have really had to is horrible as people stare. Even with just the rash like you say people think it’s contagious and treat you differently. But hey they say “ don’t get down”. So you become a recluse in your own home some weeks. Please it’s so worth a try or at least a discussion with your doctor/ consultant and see what they say. Hope it helps in some way. Everyone with this awful illness deserves to live a healthy and happy life. It very much a unknown and unspoken illness that they really need to find a cure xx
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