Am I diagnosed with CIU? (Chronic Idiopathic Urticaria)

Posted , 19 users are following.

Ive had hives and rashes on my body for the past months (since march). My doctors diagnosed me with CIU. Just started Xolair 13 days ago and it does not seem to help me in any way. I woke up yesterday night with the WORST CIU attack thus far. (pictures attached). Should i continue with Xolaire shots? Can it be that I'm mis-diagnosed? Are the pictures posted below common with CIU patients? 

*Side note, hives go away with prednisone almost instantly. But i certainly do not want t be dependent on it.


2 likes, 23 replies

23 Replies

  • Posted

    Hi there, sorry to see that you are having hives like this. I have had 5 rounds of Xolair (started out at 300 mg every two weeks, increased to 375 every two weeks after 4th set of shots). From what I understand, Xolair takes time to build up in one's system and it may take several rounds of shots, and thus several months, to work completely.  I started noticing improvement after 3 sets of shots, but I still get hive attacks if I eat trigger foods (soy, dairy, gluten). I have other side effects from Xolair I'm not crazy about (terrible fatigue for 2 days after shot, red dry skin on face) but I'm gonna hang in there and see if it works. So far I get a little better after each round of shots. I hope this helps.
  • Posted

    I have exactly the same kind of hives every single day unless I constantly take fexofenadine twice daily. A course of prednisone stopped it until I finished them and immediately they returned.  I am on a low histamine diet along with the anti histamines to dampen down the attacks, but know if I eat something remotely high histamine or miss one single dose I will be covered the next day. The hives never go away - they are just there below the surface waiting to explode! Constantly feel itchy and irritated under the skin. My head itches all the time and my stomach and intestines are inflamed with the high histamine levels. My cause of the problem was b12 injections in April of which I had a severe reaction. Have no idea what solution there is unfortunately.
    • Posted

      You're lucky that foxfendadine (aka Allegra) twice a day works for you! I was on steroids for several months and on top of starting Xolair, I still need to take the following just to make it through the day. I am  hoping that Xolair will make these unnecessary soon: (1) fexofenadine once per day; (2) hydroxyzine twice per day; (3) zyrtec once per day; (4) Singular once per day; (5) h1 blocker zantac twice per day; (6) doxepin twice per day  Some days this isn't enough and I double up on hydroxyzine and/or zyrtec. I can't have histamine-causing foods too so I avoid night shades and spicy foods. I can hardly eat anything. It's nuts.
  • Posted

    Hi Martin.

    That's def chronic urticaria. I hve had it four times now in my life. I am 30 at the mo. I'm not allergic to anything. It's just my immune system going nuts for no apparent reason. I am taking fexofenadine 4 daily, ranitidine 2 daily and Montelukast 2 daily. Still have some hives. They will eventually dampen down and then I can decrease the antihistamine level. But on average, this will last 5 to 12 months. Steroids will work but you can only use in short burst. I find if you do a two week course and then taper off whilst still taking antihistamines, the antihistamines seem I then control the hives . Feel free to ask anymore questions. Bit of an expert now unfortunately

  • Posted

    Definitely hang in there, it does look like urticaria.  I've heard it can take a few to get going but then you should see good results. Perhaps as others have mentioned the dose might need tweaking but do persevere.

    Mine have been going on for 6 months and I can't even get on the waiting list for the Xolair injections. I'm not sure if it's the health authority that I'm under but because I'm not covered head to toe in hives my dermatologist seems reluctant to refer me on for them.

  • Posted

    I developed a rash which looked the same as yours.  After some time I was referred to a Dermatologist who diagnosed Chronic Urticaria which was not triggered by food but was an auto-immune reaction.  I am taking 180mg Fexofenadine once a day which is keeping it under control as I now only occasionally have a flare-up which soon clears with the addition of an extra dose of Fexofenadine.  I was told to come off the medication every three or four months to see if it had burnt itself out.  Tried this but the rash came straight back.  Hope this helps.  P.S   Does anyone know of any cream to use which will ease the itching?
    • Posted

      Someone on an CU Facebook group recommended Emu Oil for the itching, I haven't ordered any yet but will be doing.
    • Posted

      Sorry not FB, it was on my post on here, Emu Oil Plus.
    • Posted

      Hi Vivebee (I like the is like a bee hive , this urticaria, isn't it.,)

       last weekend I tried two products that actually help a little, meaning, they work for brief relief but feel great.  One is a soap called "ditch the Itch Bar" by a company called All Terrain.  It contains tea tree leaf oil and oat extract among other things, and it really calms my skin in the shower.  I lather up and let it soak in for a minute before rinsing.  The body lotion is made by JASON, and contains aloe Vera.  It's in a green tube and boasts, "calming, moisture relief, for sensitive,irritated skin. ". I tried it in desperation and it actually helps a little and is the only lotion I can put on my skin at this time that doesn't increase urticaria activity.  It smells nice too.   Hope this helps.   Actually I've tried pure aloe gel from the actual plant, and that helped a little too.  

    • Posted

      Hello JCH187

      "sarah32693" recommended it first.  I tried it after seeing her post, and also posted on here about it. 

      I have had CIU since before Christmas. I had it about ten years ago, when fexofenadine was enough to keep it under control.  This time, the antihisamines I have tried (fexofenadine, cetirizine and phenegren, in various doses and combinations) are not working, and I have not been free of the hot, burny rash for weeks, although sometimes it is worse than other.

      Emu Oil Plus does not cure the CIU - but it is the best thing I have found for the rash, and it has helped me sleep.  I also tried 2% menthol cream, but I could barely feel the difference.  EOP is strong-smelling - it can literally make my eyes water if I put a lot on.  But you can feel the difference. 

      But like I said - it is not a cure. I am fed up to the back teeth of my urticaria and planning to ask my GP for xolair injections.  I know they are pricey so I may not get them - but my CIU is clearly not just going to go away by itself. And if three types of antihistamine have not worked, I am not confident that any other type would. 


    • Posted

      I've ordered some, if I can get the itching under control that will help enormously. My GP hadn't even heard of the Xolair injections and my dermatologist said there was a 6 month waiting list, I really hope you have more luck asking for them than I did!
    • Posted

      Let me know how you get on with it - I would be really interested to know. 

      Had the worst night (after a bad day) for ages last night - woke up and had to put more EOP on twice in the night - so it is not a cure-all.  But I think I would have been worse off without it. 

      Ha, ha - WAS going to make an emergency appointment this morning to request xolair (although I can't see my GP agreeing) - but I was too knackered to get up at 8am and make that call!

    • Posted

      Yep - your story is the same as mine! Altho there are no big outbreaks since April, just the odd one or two here and there, anywhere or a lump (like the one which has just come up on the back of my hand on one of the veins for no reason whatsoever) = Fexofenadene x1 and Cetirizine x1 daily for a couple of months and taper off.  Meanwhile getting thryroid function and Vit D level checked next week.

      Re cream to ease itching - I use Aquaeous Cream with 2% menthol - it feels good on the itchy bumps smile and has no side effects, non-greasy and smells refreshingly minty! Doc prescribed it.

  • Posted

    Hi Martin, today is my first time on this site and I am so happy I found it!!!!   This chronic idiopathic urticaria is crazy!!  I also had my first episode of hives this past March 2015.  At first I thougt it was just random, then the hives started to occur daily and one day 3 weeks later I awoke with facial, lip and tongue swelling as well as hives.  Saw allergist.  Was told probably viral, and to return in a month.  After a month I was still getting hives regularly and more severely and was no longer thought to be viral.  Diagnosed chronic idiopathic urticaria .  Had first shot of Xolair 3 weeks ago but no improvement at all.  In fact, I've had several episodes of severe hives where my entire body was absolutely covered in hives....only part not affected was soles of my feet.  The hives itch , burn, and feel like I'm covered with cactus needles, and they look scary.  I am so distressed about this.  Every day ( night ) I get them, they fade a bit, then they are back the next evening.  All blood tests came back normal.  I feel like my body is allergic to its own skin!  I was blaming myself for not being able to figure out the cause, but now I just believe something (pretty sure it may have been extreme stress) back in March triggered my immune system to go wacky and now it's having trouble resetting itself.  I am on Allegra twice daily,  levocetrizine at night, methotrexate twice a week, Xolair once a month, and at the moment, prednisone daily to try and control this far with very little relief.  Hopefully the Xolair will work.  Until then, hopefully the methotrexate will work so that I can get off the steroids.  Once something works and I'm clear of hives for awhile, the allergist said we'll start taking away meds one by one.   I am so very sorry that you and everybody else here has to endure this terrible thing.  It is not just some red bumps on the is far worse ( especially when one considers the amount of histamine circulating in the body during an episode).  I wish you success with Xolair...maybe the second shot will do it.
  • Posted

    Martin, I just bought a book, "The Paleo solution" by Sarah Ballantyne(online from Amazon to my Kindle -$10.00) . I highly recommend it.Your case is probably like mine and stems from an aautoimmune problem. You have lots of company in your discomfort and puzzlement! L

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