After years of struggling with what I thought was only allergies I was formally diagnosed with spontaneous idiopathic urticaria and angioedema (I will refer to it as urticaria from here as it is a mouthful and a lot to write over and over). I wrote a blog post about it a few months ago, it can be found here. Treatment varies and there is a pathway so to speak guiding healthcare professionals so they can give their patients the best treatments for them and more importantly give them a better quality of life. The pathway generally is (although it can vary and your treatment may not follow this step plan below or you might be on different types of anti histamine depending on your clinician)
- H1 anti histamine (Non sedating anti histamine)
- Quadrule dose H1 anti histamine
- Anti leukotrienes
- Monoclonal antibody treatment
I am on a bit on a concoction of tablets and now injections to treat it. I have been on medication for what we thought were allergies for years but over the last couple of years this has been tailored more for the urticaria.
I currently take Chlorphenamine which is a sedating first generation anti histamine, then Fexofenadine, and Desloratadine which are non sedating second generation anti histamine, Montelukast which is an leukotriene inhibitor, Cyclizine which is a histamine blocker and then finally Omalizumab which is a monoclonal antibody.
It has been a process getting the medication right and although it seems like I am on a lot of different things each one has a role and does have an effect on me. We did some trials on and off things to make sure I am not taking anything that is not doing something. If the drug did not have a positive effect then I would just not take not.
I have now been on Omalizumab (commonly called by its brand name Xolair) since the 6th of April. The process of starting biologics for urticaria was very different compared to when I trialled Mepolizumab for my asthma. Some of the biologics that are used to treat asthma can also treat urticaria particularly omalizumab. Having been through the process of starting biologics for my asthma I am familiar with the protocol- you need to hit certain criteria and your blood results need to fall within a certain range. For mepolizumab I did not hit the markers that are required due to being on long term oral corticosteroids, we were able to show how my bloods change depending on the dose of oral steroids so I was able to start it but after a year I really had not seen much improvement and I also had a few things happen with my eyes that we were not sure if it was the mepolizumab so we stopped it. To start omalizumab for urticaria appeared to me a much simpler process. It felt like it was pretty much clinician decision, and if they feel your urticaria is bad enough and you have not seen improvement with the other treatments then you are able to start it.
A few weeks before I started omalizumab I needed to start doing the Urticaria Activity Score-7 (UAS7) and I continue to do it to monitor how my urticaria is on a day to day basis. The UAS-7 is simple and not time consuming at all, much like doing your peak flow for asthma. The UAS-7 scores you based on the number of hives you have and how itchy they were, you get a score for both parts and total these up weekly to give you an overall score. The hope is that this score reduces while you are on omalizumab. Some people have found their score can drop to 1/4 or 1/3 of their starting score. I have noticed a significant difference already with my average score originally around 34 where as this week my score was 15.
The UAS-7 is very frustrating though but many tools to measure health can be. I am quite into digital technology to manage my health so I went looking for a UAS-7 app that I could use much like all the other apps I use for my peak flow and spirometry to manage my asthma. The only app I could find that I was able to use was in spanish, there was another app but I was not allowed to use it, I think due to being in the UK I suspect. The second frustrating part of the UAS-7 is that the scores don’t often reflect how your urticaria has been, particularly early on when I was not on omalizumab. With hives the presentation can vary from lots of very small hives to perhaps one or two hives that cover your entire arm or leg. If you had the large hive this would give you a low score however for me I often find that the bigger the hive the worse it is. What I tend to do is put a mark on the score sheet and take photos of the hives and show the Dr what it was like.
My omalizumab is predominantly managed in the pharmacist led clinic rather than one of my allergy consultants. I have never been under a pharmacist led clinic but it is really good and I find I do get a lot out of their appointments. Initially I has to have my omalizumab at the hospital incase I reacted to it and needed medical intervention. This week I have my first at home injections. I have a virtual clinic appointment with the pharmacist first so she can check in how I have been and then I can do the injections myself. I will then be set up on Home Care and my medication will be sent to me and I will need to keep it in the fridge (I had to call my energy provider to make sure I was on the urgent list should our power go out as the omalizumab needs to be kept at a certain temperature before being used). It is exciting and nerve wracking to be on this treatment at home myself knowing the price of the injections etc but I am so thankful to have been given the opportunity to try this.
I am still quite early on in my treatment but I have noticed a difference in my urticaria. I still get urticaria on a daily basis but the biggest change is that I am no where near as itchy as I was. The hope is that the urticaria will go into remission as it is an autoimmune condition, for some it may not go into remission and you will stay on the treatment but sometimes you can come off it.
I have also noticed that I have had other benefits which I think are due to the omalizumab. My nasal and sinus symptoms are not as bad, I used to find I would often have pressure in my face from my sinuses and I would always get woken up at night due to a combination of my asthma but also post nasal drip which would wake me up due to coughing. It might be a coincidence that this has improved but the lining of your sinuses etc are the same tissue as the airways so it might be helping. I am going to ask the pharmacist when I see them next.
Overall this has been a positive step for me and I might finally get one part of my health under control. Here’s hoping that I may get even more benefit from being on omalizumab.
ANONYMOUS-ASTHMA 