Chronic Urticaria- suffering for 13 months 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.

The Telfast which was working fine months ago, seems have much less of an effect now. Is it wise to change antihistamine type? Are there better ones, or some specifically better for treating this condition? A friend told me that a friend of his swears by an antihistamine with Levocetirizine 2HCl. Does anyone know if this works well?

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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9 Replies

  • Posted

    I had already responded to such a notification giving my personal experience of such a problem long long time back when I had suffered from it when I was under 30. i tried numerous types of histamines to get rid of it before I could hit a simple/ very cheap antiallergic syrup which i used for quite some time. This syrup worked quickly to get rid of such an urticarial attack as a when it happened. It was used for many months or possibly weeks (I do not remember exactly) after which I got rid of this problem and since then I am quite ok at an advanced age now. I suffered from this problem at least for more that a year.

    In view of above, I am sure you will get rid of it in due course. I know it is a highly trouble some problem.  keep trying anti allergic medicines till you hit the correct one. Wishing you the best.

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  • Posted

    Oh my goodness poor you.....the one thing that may make a difference to you is look at what soaps, shower gels, furniture polish,wipes you are coming into contact with. 

    Companies have been adding a biocides over the last few years that are causing a lot of individuals to react as your self. The culprit is called  Methylizilsiolione or MI for short. It's always listed in the ingredients of any product and usually the last allergen....however although it's the smallest amount added it appears to reek the most havic. Good luck x

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    • Posted

      Dancer10, you will not believe it, but I have been using Dettol antibacterial soap now for several years, never even thinking of it as anything other than a great cleaning soap. Well, based on the information you suggested, I just went and looked at the ingredients, and to my absolute shock, YES, it does contain Methylizilsiolione!!!!. I am now wondering if this is the culprit!! I am just confused because I have been using these soaps for much longer than I have had the Urticaria reaction. Could it have been building up progressively???? I am completely baffled now, but I guess the next step is to stop using Dettol soap and see what happens. Doctors did ask me if I was using any new soaps, deodorants or creams, to which I always replied no. I will start doing some more research, but I thank you so much for introducing this as a potential trigger, because I would never have known otherwise. 
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  • Posted

    I feel for you. I have the same thing, but not to the same extent that you have. I can only share my story briefly with you, not offer any advice unfortunately... 

    My Urticaria started back in 1998, after a stressful period in my life. I had pressure urticaria, where anything causing pressure on the body - rucksack straps, walking boots around the ankle, sitting on a hard barstool for a few hours - would result in red swollen weals appearing a few hours later, which would dissipate over the course of the next 24 hours. This eventually stopped of its own accord. 

    In 2014 I had another episode, again after some stress. I would go to bed and in the morning would have itchy palms of hands and feet with red spots on them. Sometimes I would get wheals on other parts of my body, could be anywhere. I also got the pressure type too. Again this went eventually after a while. 

    I am currently going through another bout of Urticaria, again after some stress (having our car broken into on holiday and all our suitcases stolen) - both types again - which has been going on for approx. 5 months.The itching on the hands and feet can be especially bad!  It is now easing I think. 

    I don't take any medication, and I haven't been to the doctor about it. I have read quite a bit online and have not yet discovered any one thing which seems to work for all people. I try to take comfort in the fact that one day, it WILL pass.... and personally I choose not to interfere with it too much, and  have faith that my body will sort itself out eventually. 

    I am lucky not to be in a hot country, as I think that would make the itching very much worse…. I feel for you and hope you find a solution which works for you, or that it just disappears eventually. Hope this makes you realise that you are not alone, many people have this, and it is very frustrating that Doctors seem just as baffled by it.

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  • Posted

    hi.some supplement can reduce the allergy . vitamin D may help you in your condition.and test your vitamin D level in your body..
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    • Posted

      You know I just read this response, and amazingly I was also thinking that Vitamin D might be triggering my current attacks (as well as stress)- I know I have low Vitamin D levels, so I will start taking vitamin D and see if this actually helps reduce my condition, because at the moment, I am suffering even more than previously. It is relentless and so random.
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  • Posted

    It has been many months since I posted anything here. Since my last post, I was able to maintain control of the itching and rash by taking as many as 3 to 4 antihistamines per day. Some months ago I noticed I was not feeling the pre tingling and skin tightening, so I decided to test and see if there was an improvement, and so I reduced the dosage to 2 tablets per day, which was still controlling the condition. Around 3 months ago, there were days I was forgetting I even had the condition. I reduced to one tablet per day (Telfast), and eventually to my surprise and absolute excitement, i finally was able to stop taking any medication around 3 months ago. for the first time in almost 3 years, I was completely off any medication and I had no rashes or itching. Occasionally I would feel the skin tightening and tingling, but nothing else eventuated.

    You can imagine how happy I was to feel I had finally been cured.

    Well unfortunately that was short lived.

    Two weeks ago I lost my job of 9 years, and among many other things happening in my life, i felt my stress and anxiety levels were increasing day after day. Then suddenly 5 days ago, I felt the pre tingling and tightening of the skin. Then a small patch of red appeared on my arm and leg, followed by mild itching. Again, you can only imagine how upset I was to see this happening again. Sadly, this only got worse until I started taking the telfast again 3 days ago. I took 1 tablet at first, which took so long to work, but the next day the rashes and itching got worse so I took 2 tablets. Even 2 tablets did not completely stop the itching. Last night and today, the urticaria is back in full with a vengeance- I have taken 3 tablets and they have had minimal effect. The redness and itching is relentless and I am back to square one.

    The only difference to anything from the previous few months is my level of stress and anxiety. For this reason, I am now certain that stress plays a major role in this condition. I cannot think of any other reason it has started up again. I am very upset that it has returned, and more so because it seems antihistamines are not fully controlling it this time. I am so hesitant to go to a doctor again, because I know they will have nothing more to add other than to say just increase the dosage of antihistamines. 

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