A year on Omalizumab

I cant believe that it has been a year since I had my first injection of omalizumab also known as Xolair.

I am on xolair for spontaneous idiopathic urticaria (hives) and angioedema (swelling), it also benefits my asthma as well although the dose I am on is higher than what I would be taking if it was for my asthma.

Over the years I have tried so many different medications for my hives and swelling and I continue to take a small cocktail of medications which include different types of anti histamines, leukotriene receptor antagonists, histamine 2 blockers, oral steroids but this still has not made a significant change to my symptoms. I know they all do a job and they all help my symptoms in some way but they don’t take them away totally.

Due to the history with other medications I was skeptical about how well xolair would work and if it would be that magic medication I was hoping for. I found myself in a really weird place when thinking about the prospect of starting xolair. One the one hand I was excited and holding onto so much hope that this will help (and then found I was getting so upset when my start date kept getting pushed back due to the abdominal wound and infection in it) but on the other I was skeptical if it would do anything because nothing so far has done much. The only time I was getting any real symptom relief was when my asthma was really bad and I was being given intravenous hydrocortisone.

As part of the work up for xolair for hives and swelling you don’t rely on bloods and blood results but keeping a daily symptom diary using the UAS7 (Urticaria Assessment Score- 7). This score is added up each week to give you a number. The maximum score you can get for a week is 42. Pre xolair my average score was 36-38 a week which is really high. It is very subjective and based on your own experience of symptoms rather than a number that shows up in your blood results.

After just a few doses I was seeing a significant improvement of symptoms. My UAS7 was down to the 20’s after 2.5 months. Part of me was questioning myself was I actually seeing an improvement, was it coincidence that my symptoms were a bit better or was it psychosomatic and the injection wasn’t actually doing anything but my brain was thinking it was. I kept waiting to wake up and realise that my symptoms were not better it was a dream. I spoke to my allergy team about this and they said they often get patients questioning themselves as to their response to xolair. Part of why I was questioning myself so much is because I have only had experience with biologics in asthma before not hives. In asthma they say that biologics tend to take 6-9 months to show an improvement but sometimes up to a year so when I was seeing improvement after a few months I thought it couldn’t be possible based on the knowledge I had.

When biologics are used for hives they work differently as you do get a response much quicker. As time has been going on I continued to see an improvement with my daily symptoms being almost non-existent. I would say that after 9 months my symptoms have plateaued and stayed fairly stable since then. There is only the odd occasion that I get hives or swelling and on the whole I only know about it because either someone has spotted the hives as they have not been itchy like before or swelling because something is tight and that is what draws my attention to it.

When I was first on biologics for my asthma it was a chore as I had to go to hospital for the injection. This meant travel to hospital, wait around, then have obs done, then wait for the biologic to be prescribed, then it comes out the fridge, wait for it to warm up a bit before I was given the biologic, then had to hang around a bit (4 hours at first and then it reduced each time until I could go home straight after). It just took so much time but now there is home therapy. If I wanted to go to the hospital for them to give me my biologic each time I could but that would be every 2 weeks. I do my injections myself at home at a time that suits me. The only waiting around I need to do is once every 3 months when my injections are delivered but even then I get given a 1 hour window so that I am home when they arrive and they can go straight into my fridge and wait till I need them. I then have a phone appointment every 3 months with the pharmacist just to checkin with how I am doing. It has been a really painless (apart from the stab of injection) experience and I have felt really supported along the way.

I had my year review with my consultant yesterday and he wants me to stay on xolair long term. We discussed possibly reducing the dose but because when I am unwell or get an infection my hives flare back up to levels before I was on the xolair, because of this he doesn’t think I am in remission which can happen with this condition because it is autoimmune. I did ask about reducing some of my other meds but he wants to leave things as they are for now to allow me a period of wellness (whatever that is when you have multiple chronic conditions).

For now I remain on xolair and I am pleased that finally I am seeing some improvement and stability in one part of my health. I just hope that other parts of my health follow suit and I might find a medication that helps as well as the xolair has helped.