Chronic idiopathic urticaria

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Hi I have found out I have this and been on many antihistamines to try and control it but I am now on fexafenidine and these don't seem to work at all some days when I have a flare up I look like I either have nits or I need a fix of drugs to people who don't no me stare and makes me so upset I have been having more flare ups recently spots all over my arms legs neck back and in my hair

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  • Posted

    So sorry you too have to deal with this this.. When the antihistamines alone stopped working for me I started on prednisone then since you really shouldnt stay on that long, the allergist started me on xolair shots.. I have had the hives again for almost a year and just had my 7th shot.. it has greatly reduced the hives, most days i have none, but when i do get them it is a couple and I do also get awful itching with nothing too... The xolair shots come with side effects and here mine are 5500 a shot but Thank God insurance pays for them .. At this point in my life I would rather take the shots and the side effects without hives from head to toe.. Are you going to an allergy specialist ??
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    • Posted

      Yes I have been to see a specialist he said he does not no how I got it but I am stuck with it for life he says I could have tabs to ease my itching and symptoms but nothing is working I have not been told about the shots yet but I am going doctors in Monday anyway so will ask him about this as it seems this might be the right way to go. It is horrid to have and other people don't understand u can not catch itI was sacked from my I the job because I had an outbreak and some customers did not want to be served by me as thy thought I had nits or something I did explain but he wud not listen

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  • Posted

    Oh this is horrible you were fired from your job.. I hope you can find another with someone who understands this.. where do you live??  And you may not have this for life sometimes it goes into remission for years mine did for 40 yrs .. I am in my 60 now and dont work but when i did and i had them ocassionally it was horrible.. so I know how you feel.. If you can see an allergy specialist not a reg md as they dont know what to do about it.. 
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    • Posted

      I am from Liverpool England and I have seen an allergy specialist thy have done all the patch tests and thy don't no what I am allergic to ( I sed it might be my partner and kids lol) but I just have to keep on the antihistamines till thy find out what is coursing it I have had it for 7 years now and not even close to where it came from I went the doctors with a rash that just turned up and never gone away

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    • Posted

      Oh Jacque.......you should not have to live like this.  You need to see either a immunologist or rheumatoid doctor that has experience with Chronic Urticaria.  I started the hives when in my 30's treated it with antihistamines to keep hives away they lasted 2 years then went away completely for over a decade then they came back again, treated with antihistamines and Singular......went away after 2 years then again gone for over 10 years until 2 years ago I am now 66 and nothing was able to stop the severe hives!! I went to 2 different doctors until last one recommended that I go to Johns Hopkins here in the states in Maryland.  She put me on Cyclosporine slowly then needed to add Prednisone...that combination stopped the hives.  I stayed on that for a couple months then she very slowly weaned me off the Cyclosporine and then extremely slow is taking me down off the Prednisone 1mg at a time for a couple of weeks then if still no hives then down another 1mg and so on.  I am now down to 1mg of Prednisone in the morning and in the evening an Allegra with 1 Singular and am still hive free.  If hive free continues then I will go down to 1mg Prednisone every other day.  The key is to wean off the Prednisone so slowly to let your body get use to the change and to let your body heal.  I don't like to have to take meds but am greatful that I am keeping the hives away and giving me quality of life the past 2 years.  My hives evidently are brought on by stress different times in my life.  The hope this helps you as well.  I'm sorry for other bloggers that have heard all this before.

      i wish you well!

      wendy

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    • Posted

      Hi Wendy I live in Liverpool England so not to sure if thy can give me them tablets i will make an appointment and see what thy say it is horrid and if u don't have it u don't understand what we go through the pain. The itching all night and then the pain because u have itched that much

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    • Posted

      Yes Jacqui

      Chronic Urticaria is awful and only those suffering from it knows just how bad it is. Please share with your doctor how my specialist doctor has been treating me.  The important thing is to get the hives under control to be hive free.....that is what she did for me.  Most doctors do not know how to treat this disease.  Her goal is to get me into remission with little or no medication.  Not good to be on Prednisone for long periods of time but I have been on very low dose......and honestly....quality of life is so important.  My hives were so severe I could not sleep as so burning painful and no quality during the day as well.  I have been so greatful to be hive free the last couple of years with the exception of just few here and there.  If doctors are not able to help you... perhaps they can contact my doctor here in the states.

      i wish you well!

      Wendy

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