My experience, comments please

Posted , 2 users are following.

I have suffered from chronic urticaria since I was 17, I am now 50. It come back every few years and ruins my life for as long as it takes to go again. I have never known what it is, or found a solution. It was only in a flash of long overdue brilliance, that I thought of looking on the net and found this ssite.

I saw many Doctors, had many tests and have tried, I dread to think how many, anti histamines , over the years. Only one ever worked and it was called Co-Pyronal (that may not be a correct spelling), back in the mid 70's, but after 3 yrs they stopped it, saying it was cancer causing, nothing has worked since.

I was told I had an intolerance to something and for all these years have tried to figure out what. The rash, though, seems to appear at random with no apparent catalyst and all efforts to isolate a cause have proved fruitless. It lasts for a random time, covers my whole body to varying degrees and makes my life miserable with chronic fatigue and itching.

Some research on the net has given me an inkling about this and I now appreciate that there may be no obvious catalyst to its onset.

I note however, that I seem to fall into several of the types of urticaria and therein lies my question, finally.

From its onset:

It always starts at the hair line/wrists and develops over time (days/weeks) to cover my entire body with each appearance.

I suffer from \"pressure\" at waist, wrists, ankles.

I get a reaction, approximately 24 hrs after I sunbathe on the most exposed ares, normally chest and shoulders.

It appears in the late afternoon/early evening after I have done manual work.

The evening is the worst time and after being told by a Doctor many years ago to have a drink when it is bad, I have a bottle of wine when it gets too bad and that numbs the itching at least.

I also discovered recently, after being prescribed Amitriptylene tablets for eye pain, that they bring on a violent reaction that lasts 24-36 hrs.

It is with me again, since Xmas last year and I am so miserable. Everything I do is controlled by this ailment and the fatigue is hard to live with.

Any advice/comments would be most welcome. My Doctor tells me that is a waste of time going on the list to see the one Dermatologist for the SW of England and that all I can do is keep trying Anti histamines in the hope that one will work.

I am so miserable, any advice would be most welcome.

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4 Replies

  • Posted

    You poor soul! I am fairly new to this (8 months) and through looking on the net have decided I have Urticarial Vasculitis, large itchy wields, rash, joint pain and fatigue but with two young children and a job I have to carry on. I am particularly down as there is no long term prognosis and no cure. I could cry! However chin up (hope it does'nt blister!) I will think of you in my prayers (not that I am particulart religious but it may be my only option!) I too am in the SW of England and finally off to a dermatologist next week (Waited 3 months for appointment) Although in my heart it'd going to be a waste of time! Best wishes. Lusia
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  • Posted

    Hi, you mention that your urticaria has come and gone over the years - this sounds like you have had remissions, and therefore it is possible that your hives are autoimmune. There are specific tests for this - one is the autologous serum skin test (ASST). If your hives are autoimmune, then there are other possible treatment options - for instance, cyclosporine, which is an immunosuppressant drug, used in much smaller doses for chronic urticaria than for transplants. I urge you to ask your doctor to refer you for a test to see if your hives are autoimmune, best wishes, Carol
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  • Posted

    Thank you both for your comments.

    Having seen the Doc today for yet more Antihistamines to try and then, purely by chance, checked this forum.

    Carol, I have the Doc ringing later and will ask for the test you mentioned, thanks a million for the comments smile

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  • Posted

    [b:1a675941b6]HAVING SUFFERED THIS AILMENT FOR 15 MONTHS I TRIED ALL VARIATIONS OF ANTIHISTAMINES WITH LITTLE, OR SHORT LIVED SUCCESS.

    IN DESPAIR I WENT ALONG TO A PRACTITIONER OF CHINESE MEDICINE AND WITHIN 8 TREATMENTS THE HIVES HAVE ALL BUT GONE.

    HE USED A COMBINATION OF ACUPUNCTURE, HERBS, CUPPING AND VARIOUS FORMS OF ACUPRESSURE TO ALIGN VERTIBRAE ETC.

    LONG LIVE CHINA!!!!!!!!!!!!!!!!!!1[/b:1a675941b6]

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