Finally I have a formal diagnosis of spontaneous idiopathic urticaria for the allergic type symptoms I have been experiencing and unable to control despite multiple different types of anti histamines, anti leukotriene receptors, histamine-1 blockers and oral corticosteroids. The outbreaks of hives and associated itching as well as angioedema can often be debilitating and leave me scratching my head (both literally and figuratively) as I often can never identify a trigger.
I am allergic to salicylic acid which is a complex allergy to have. When I have told people about my allergy to salicylic acid I get the response “oh yes, so its just aspirin”. I wish it is just aspirin as that is easy to avoid. Rather than being allergic to a specific thing such as peanuts, tomatoes or tree pollen, I am allergic to salicylic acid a compound which naturally occurs in a wide variety of things not only in food but also cleaning products and other household items. Due to the wide variety of things that salicylic acid is in I have always blamed my allergic symptoms on this and have had a reaction because I have come into contact with something without realising it.
The hives and angioedema often became unbearable and so after many visits to the GP surgery and speaking to my respiratory consultant I was referred and seen in a joint allergy clinic. I saw them years ago but because my asthma was so bad I was on much higher doses of oral corticosteroids which kept the hives and allergic symptoms greatly reduced. It has only been the last 5 years or so that things have escalated mainly due to reducing my maintenance oral corticosteroid dose.
The wonders of smart phones meant that when I was seen in the joint allergy clinic I could show the consultants photos of the hives and swelling I get. Because of this we were able to move forward and make plans. After reviewing my diet and really making sure I was eliminating as much salicylic acid as possible, it was clear that it was not the only culprit and something else was the cause or as I now know there is no cause, it just happens for some reason.
Sometimes as patients we can get fixated on finding a name or diagnosis to symptoms that we are experiencing and it often does not change anything. In this case however having a formal diagnosis means that there are some specific treatments you can qualify for which you would not if you do not have a diagnosis.
I am not sure how I feel about the diagnosis but the prospect of putting the condition into remission offers hope and if remission is not achieved then there are treatments that can be taken longer term.
This week after having to postpone a few times due needing abdominal surgery twice, I was able to start monoclonal antibody treatment also known as biologics. The pathway for qualifying for biologics is not simple and despite a fair amount of knowledge in the area I still cannot wrap my head around it. I will write about this in another blog post.