Suffering from Chrocin Urticaria for one year now

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In November 2015, I suddenly began feeling itching on my hands, and my feet. I am based in Abu Dhabi, and had just traveled to Lebanon and stayed in a room that was quite dusty. The itching was on and off for a few days and I didn't think much of it. I then traveled to Australia, again staying in a room which was dusty. The itching got worse, and for the first time, red patches with heat and small "bumps" in lines started to appear on different parts of my body. I went and saw my GP. I explained my travels, and he diagnosed me with Scabies, and prescribed medication for this. On researching Scabies, I was sure what I had was not scabies, but I completed the treatment. The itching did not stop, and in fact at times became quite intense, but then eased off at random times. I returned to Abu Dhabi, and with the rashes and itching continuing, especially at night, I went to see a dermatologist. He prescribed Telfast 180 antihistamines, which seemed to help control my condition, and asked me monitor my food intake over several days to see if any food item was causing my allergic reaction. Every time I thought I had found the trigger, it seemed to fail with the itching not stopping after days of control and monitoring of foods. The same doctor then suggested that I conduct some allergy tests. I did the first test (blood test) for food items (quite expensive and not covered by insurance, but had to be done as my frustration and itching had become quite intense!). The results came back with everything negative except dairy products. I was somewhat relieved to at least know trigger of my condition, and so I stopped all foods with dairy. Days passed, yet the itching did not stop. At times it actually became worse! The doctor was also confused and suggested I do another allergy test for dust and external factors. The testing place also did a food test again with this dust test. To my amazement and shock, all the results came back negative- including the dairy results, which had come back positive last time. I became more frustrated and the doctor seemed even more confused than before. Meanwhile, my condition continued to progress with severe itching in random and differing parts of my body, the worst place being the soles of my feet and my hands. It was excruciating, and I felt so helpless- at times I would be on the floor like a baby scratching uncontrollably. 4 months had now passed and I went back to the doctor demanding something more. He injected me with a cortisone shot. This actually made my skin break out in a horrible rash on my upper arm which took weeks to heal, but it did slow down the itching for some days. In the meantime I was taking one Telfast a day (at this stage not knowing it was safe for me to take more!!!!). I searched for allergy specialists in the UAE, and finally found one who made monthly visits from overseas. He examined me and after testing my skin for "staining" which he called "dermatographism", he told me I had an allergic condition known as "chronic urticaria", which was the first time I had heard of the name for my condition. He told me to be patient and continue to take antihistamines, but he also recommended I do a prick test. In July I visited Lebanon again and was able to find an experienced immunologist. She was great, and went through my condition in detail explaining that the cause was often never found, and that doing allergy tests was useless in most cases since with chronic urticaria, tests often gave "false positives", which explained my dairy findings- a false positive result. It was great hearing detailed information specific to my condition, but quite upsetting when she went through the statistics of the condition- something like 50 % of cases heal within a year, 30% within 5 years, and 20% have it for a life time. Also disturbing was the statistic that in 90% of cases, the cause is never found, while in 10% of cases, the cause can be something internal and often something serious (including cancer!). She told me my treatment would occur in stages. She wanted me to increase my Telfast 180 from 1 tablet to 2, 3 or even 4 tablets per day as long as no symptoms showed. If this dosage did not suppress the condition, she then mentioned other progressive medications, but told me to start with the Telfast for the coming weeks and months in the hope that this settle the mast cells back into a normal state. That was how she explained it. Over the next few weeks, I reached a dosage of 3 Telfasts per day (when I told pharmacists this, they would look at me in disbelief!). By October, I was back down to 2 tablets since for the first time in a long time, I was not feeling any effects of the condition. I was so happy thinking that my body was recovered, or at least almost recovered, and there were days that I actually was living a normal life again and not even thinking about itching or the skins outbreaks.

However, it was just 3 weeks ago, that suddenly the rashes, the heat, and the itching returned completely unexpectedly and for no apparent reason since nothing in my life had changed. I was so hopeful that it was just a bad reaction for a day or 2. But with time, it was back with a vengeance- worse than before. I increased my dosage now to 4 tablets, yet the Telfast was now not relieving any of my symptoms- not even 4 tablets a day!!! For the first time I was even feeling tingles and swelling of my lips, and had redness on parts of my body previously not affected. I was completely distressed and went back to my skin doctor since I had no access to my immunologist. He told me that the new outbreak could have been triggered by some antibiotics which I had taken a couple of weeks earlier for a urinary infection. He could see no other reason for the return of the symptoms. However he could not explain why the Telfast was no longer working- I asked for a different antihistamine but he told me it would make no difference and to be patient for a few days to see if my body would settle again. It has now been 10 days, and I can only say that I am suffering badly, especially at night time, when it always seems to be much worse. It became so bad a few days ago that I pleaded with him to give me something else, and he prescribed a cortisone tablet per day- which has actually helped in reducing the itching at most times. But I am told that cortisone tablets are potentially harmful and should only be taken for a short time. He also gave me some lotion which did nothing to help.

So here I am, writing in here out of desperation and extreme frustration. I understand that there are people with much worse and with life threatening conditions out there, but I just needed to post this to see what others have done to treat this condition, and whether I should still have hope that my body will actually recover back to the pre-unrticaria stage. Are there any suggestions from anyone who knows about this condition? Please, any advice would be appreciated. I am traveling to Australia next week- I tried to book an appointment with some good Allergy/ Immunology specialists, but to my dismay, most are booked out for up to a year!! I was lucky to find one allergy center that could take me early in December, but they want to conduct a range of allergy tests (even though my specialist in Lebanon suggested there is no point given the "false positive" results likely to happen). The other problem with conducting these tests is that they ask for you to stop taking all medications such as antihistamines and anti-inflammatory medications for around 5 days prior to the appointment. How will I be able to cope with the itching without taking any of these tablets for 5 days?? Do I have any other options??

Sorry for the dramatic detail but I had to release my frustrations in this post in the hope of some good advice from others who have suffered from this or from any medics who might have some information.

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10 Replies

  • Posted

    Hi lebbo,

    ​I was diagnosed with chronic urticaria and dermographism 2007 and have had it until two years ago. I took many different antihistamines, thankfully my dermatologist was quite forward thinking and she listened to me. Found my thyroid disease still had not been sorted so I saw an endocrinologist too who helped in a terrific way. Suddenly about 4 months ago I started with what I had presumed was the chronic urticaria again, last night I found it was not this, as it appears mainly on my hands and feet. I now have pressure urticaria to add to the other two. Over the years I have tried every test ther is, none have given me any answer, food has proved no answer. However I have found that whilst in garden centres passing the poison section such as weed killers etc then the area and I do not get on and I have to leave the store, along with those dreadful soap selling shops - you know the kind the bombs you drop in the bath? So now I am allowed to mix and match my antihistamines to suit me, and to try my best to completely stay off steroid tablets which are a great relief. However I may end up on cyclosporin which I have been quite afraid of trying, but it seems they are safer than steroids...................... So no test has shown me a single reason, all the time has been wasted with me looking into what it might me. It just is..

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    • Posted

      I cannot imagine living with this for much longer....and yet you have had it for 10 years!!! So different antihistamines can help? They don't all do the same thing? I have only been taking Telfast and it was working finw until about two weeks ago. Now 4 tablets a day do nothing. I asked the dermatologist and he told me it made no differece which ones I took, that is why I am confused. I am also assuming cortisone tablets are not good for you ov er extended periods. I have also given up trying to find the trigger, but I feel like I am sitting waiting for this thing to just stop- yet as in your case, I don't want to wait that long for it to get better. I'm totally stumped.

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    • Posted

      I have been told by a pharmacist who is a sufferer to mix and match the antihistamines, and also a very well qualified dermatologist yesterday at a leading hospital in the UK. I had already started mixing and matching myself, but shall do my best to stay off steroids for sure. Try a couple of mix and matches even if you drop your dose. I found my worst time was at night usually about 3am so I take my large dose with my tea say between 6pm and 7pm along with a Ranitidine 150mg - take no notice if you are told this does not do anything for urticaria. Check up on line and check up with NICE whether you are UK or USA based.
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  • Posted

    Hi Lebo,

    I'm sorry you are going through this, it really is an awful condition! I've had it for 14 months, but it has got much better recently. I had to take 3 months off work because i just could not cope physically/mentally and it is so frustrating that finding the cause is unlikely, you almost can't believe that but I have tried to figure out so many different things and I can't find the cause. There are some things that make me worse like string chemicals/smells and some chemicals in food like MSG and preservatives. I find different antihistamines have different affects on me, e.g lorotadine does nothing for me where as fexofenadine has helped me the most. I was taking a high dose 4x180g per day and at its worst that still made no difference. I would second that steroids are not good for you and have negative side effects, but they are an immune suppressant and if you are desperate they could give you the break you need. I had a short course of a week, then a week later a 2 week course that was tapered off (stopping abruptly not good). I genuinely feel like the break that have my body/skin/immune system helped to get it under control. Since then I don't take any tablets daily, and only get break outs once or twice a month and antihistamines work to stop it quickly when that does happen. It might be worth thinking about, I hope you get some joy! Sorry for your suffering.

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    • Posted

      Thank you so much for your response- it seems that everything you described is the exact same as what I have faced, and it is great to hear that it has subsided! Yes I have taken one cortisone tablet each morning in addition to the 4 daily tablets of the Telfast 180- and yes it has helped. although I still get random outbreaks, mainly at night. I am unsure if it is the combination of the cortisone with the Telfast, or just the cortisone that is helping- since last week 4 tablets of the Telfast were doing nothing, even though for many months they were working fine at most times. I am going to Australia next week and the Allergy clinic I emailed want me to conduct a prick test on my skin- even though I did blood tests already and the doctor told me my results were false postives. I just wonder whether the prick test could also give me false positives and whethert it is just a waste of time (and money) doing these tests. The worst part is that they want me to stop all tablets for 7 days prior to the test! How will I cope with the itching for those 7 days!!!!! Any suggestions please?
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  • Posted

    Thank you for your post your story sounds so much like mine.  When mine first started my doc told me the same thing scabbies i didnt balieve it but just to rule it out i took the treatment and it didn't help.  He kept insisting it was that I was so frustrated that i changed doctor plus i never liked him anyway.  Ive had it for three yrs now.  The first yr i took steroids off and on thinking everytime it would go away only to be disappointed everytime.  I got two biopsies saw two naturopath the first one didnt help me at all the second one said i was wheat intoleance and dairy i stopped all dairy and went gluten free plus no tomato products very minimal sugar no preservatives ect.... Still itching all night most of the time.  The last year has been worse for me with bad hives and terrible rashes with itching and burning sensation.  It is so frustrating i even have thoughts of suiside sometimes but God gives me strenght when i need it and im also on anti depressants which help.  Recently i've been to a immunologist and finally got diagnosed with that terrible desease chronic idiopathic urticaria.  She gave me singulair to take only tem ml a day and 20 to 40 mg a day of antihistamine.

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    • Posted

      Suicide shohld never be an option- from what I have been reading it is just a matter of trying different medications that will help. I have yet to find what is the best for me- I guess I was just hoping that after all this time it would have stopped by now. But it hasn't. Did the medication help you?

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  • Posted

    Continue from my other responce bfore it kicked me out.  In a month if that doesnt work and i know it won't i took that last yr and it didn't back then.. She is going to give me injections of 300 mg of singulair which is suppose to work but the side effects of that med sounds risky very scarry and not guaranteed to work but im so sick of living like this I think i will go for it if it helps me for a short period of time that i can feel normal again it will be worth it.  The worse thing about this is that even though I am suffering like crazy i still have to work because the insurance will not support something like this.  Nobody  knows what we go through day in and day out i'm happy that I know i'm not alone and happy to have found this support group anything helps.  Hopefully you can find something that will work for you. 

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  • Posted

    I just realised I spelt "Chronic" wrong in the title......it should read "Chronic Urticaria". And no way to edit a post.

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