Chronic urticaria everyday for nearly two years

Posted , 13 users are following.

Hi all,

Im female, 19 and generally healthy. I started getting hives May 2017 and they have gotten progressively worse since. Without fail, they occur every evening/night or I'll wake up with them covering my chest, arms, thighs, face etc. It has also led to severe swelling in my lips, face and eyes - I have been to A&E at least five times since they started because of this. It is not only very uncomfortable and frightening, but it also does not tend to fade for hours after they have stopped.

There seem to be no obvious triggers as they occur in many different scenarios etc. I have tried different medication from citrozene hydrochloride, loratadine, fexofenadine, steroid courses and now as of the past few days, montelukast - which if anything is making them worse.

It's holding me back as im constantly anxious about when the hives will come, or when my face will swell next and I have had to cancel trios to remote locations in fear that something will happen when I am far from help. I'm not sure where to go from here!

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  • Posted

    Dear Sabrina

    Sorry to hear of your woes. Looks like a number of ppl on this forum share the sale problems. For me really a dietary change has improved things slightly. Xolair has worked extremely well and wiped out the problem for the duration of the injection. So I advise you get that treatment. My practionner has stopped the injections after six months and the hives have come back so I am waiting for the next cycle of injections which should start very soon hopefully. Pending that I am taking 10 to 30 mg of corticosteroids and it works ok though I dread the secondary effects more than those of xolair. I hope this helps and that you can get better soon. But do look at low histamine diet on the web, see a nutritionist if need be. Also change clothes style and practice sport that did help me. Eg running 10km wipes out all hives for 48h in my case. Kind regards 

    G

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    • Posted

      Doxepin low dose daily treating my hives for 32 year's no injection no major side effects. It works a miracle for me .My Cold Induced Urticaria started at 12 I suffered for 5 years head to toe hives allergist allergy shots nothing worked couldn't leave the house on tons of antihistamine meds until Doxepin.

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    • Posted

      Hi Steph

      I might have to try Doxepin never heard of it all these years.

      Do you need a prescription?

      Also have you tried

      Curcumin, needs to be a strong good brand it helps a lot to cut down on strong meds

      Thanks

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  • Posted

    I'm sorry for you Sab.rin.a but you've come to a good place for lots of support from people who know exactly how you feel!  For me, nothing stopped the break outs until I began monthly Xolair injections.  I continue to take an antihistamine for maintenance every day or two, but basically, I have not had a break out since about my third month on the injections.  Ask your health care provider to consider giving that a try...... I hope the Xolair works for you...God bless!  

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  • Posted

    Hives are such a terrible thing to endure! I kept a daily picture diary of my hives(had them 24/7 with no relief) to take to the specialist (took 5 months to get into see him), tried acupuncture, every OTC antihistamine, prescription antihistamine including montelukasat, alkaline pills,  zantac, steroids, gluten free exclusion diet,  --- nothing helped. Specialist looked at pictures and said it was not an allergy to anything, blood tests showed nothing but a slightly high IgH(?). I continued with my social life as I figured it was going to be my life from then on. However a friend told me about Xolair and was lucky to get referred and shots paid for by er insurance--have had Xolair shots monthly for two years (just extended to every six weeks) and it has been a miracle for me.- no side effects Hopefully you will given an option to try Xolair - it has worked for many people. Wishing you itch free skin.
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  • Posted

    Xolair seems like the common census, which is interesting as it hasn't ever been an option given to me. I'll definitely push for this! Though I've seen things about bad side effects?

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  • Posted

    Call your MD ask to try Doxepin in a low dose 10 mg 2 hours before bed is what I have been doing since I was 17 and stricken with Hives severe acute cold induced Urticaria head to toe. With out it my life is non existent! Please try it out it is how I live with controlled hives I can't miss one day or they come back. I will be on the Medication for life but at least I can cope.Good luck

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    • Posted

      PS it's not an injection and the medicine is affordable and for me zero side effects other than if I miss taking it I get break through but as soon as I take it and let it work they are gone. I have acute chronic hives severe case trust me I know how you feel!

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    • Posted

      Stephanie;  I have Doxepin too and although I don't take it daily like I used to, I always have it on hand.  It is excellent for helping me wind down and rest.  It is used for insomnia and anxiety as well as just for conditions such as hives.  

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    • Posted

      Doxepin in the low dose won't treat anxiety or depression. It will treat chronic skin conditions . I've been taking it 17 now 49 a long time. It's been a blessing for me to control life threatening hives. Glad you have positive results with it as well.

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  • Posted

    Hi sab.rin.a

    So sorry you are having such an awful time of it. I think it's safe to say we can all relate to your experience one way or another. I have had my own story to tell, which is listed on this site somewhere! The long and short of it was that my chronic urticaria was connected to my contraceptive coil - the Mirena. It was insitu 18 months before the hives started and it took a further year of daily hives for me to make the connection. It has taken another 2 years for recovery. I now only ever get a few tiny ones very occassionally but I can cope with that as they respond to piriton baby or citirizene.

    The key is identifying the trigger and eliminating it. I do hope you manage to resolve it and please do not give up hope.

    Best wishes x

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  • Posted

    Hi,

    Try also taking a natural supplement

    Brand is oriental botanicals

    Product - curcumin

    Really helps a lot and stops me b.v from using strong medication all the time

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  • Posted

    So sorry to hear you are going through this.  I had chronic hives for about 12 months in high school (many years ago), and then they just went away.  They started again this January, and I was a MESS.  I was desperate to find the allergen that was causing them, taking 6 zyrtec, 2 zantac, probiotics, etc everyday. I was doing extreme elimination diets, convinced my house was full of black mold.    I went to an allergist/immunologist and he said "chances are these are autoimmune and not caused by an external trigger."  He did a blood tests - high affinity IgE receptor antibody level. It came back extremely elevated. Basically, my understanding is, if you make this antibody, your body is attacking your mast cells, which release histamine and cause the hives.  He started the paperwork for Xolair, but also gave me Singulair to try.  I was desperate to try the Xolair, but miraculously, the Singluair has worked 100%.  If i take it everyday, I do not have a single hive. 

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    • Posted

      Interesting to hear of your cure by Singliair consumption. Are there any side effects that you are aware of?

      Ive had Chronic Urticaria (hives) for 3 years, tried everything except Singliair, including Xolair and everything has failed dismally.

      a pediatric skin specialist once told me to “except the condition, take medication which limits the impact, stop reading food labels as this will drive you mad and bankrupt you, when the condition decides to go, it will do so on its own accord, wether it be 1 day, 1 year or 10”

      not s great prognosis however the only person who, to date, has got it right.

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    • Posted

      Hi craig17731,

      I have no side effects from the Singulair.  I've done trials of stopping it to see if my body has gone into remission yet, but at about 30 hours after my last does I will start to get the hives again, so I continue to take it everyday.  

      I completely understand your frustration.  My doctor also told me has had patients drive themselves crazy trying to find the "trigger" or allergen causing their hives, when there is none.  Stay strong, I know how absolutley miserable this can be.  I hope if you try Singulair it will work as well for you!

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