Suffering from Chronic Urticaria

[Lebbo]

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.