I started receiving Xolair injections in early 2016 in the hope that it might be the wonder drug to control my asthma. The monthly injections have produced great results for many asthmatics with some people claiming that it had completely changed their lives. However not everything is easy and straight forward, Xolair does not work for everybody, it is expensive, you have to meet the right criteria (it is only for those who suffer from allergic asthma), the injections can only be given by a nurse in hospital (usually one injection in each arm every four weeks) and as with any form of medication there are side effects.
What is Xolair?
Xolair (omalizumab) is an antibody that helps decrease allergic responses in the body.
Xolair is used to treat moderate to severe asthma that is caused by allergies in adults and children who are at least 6 years old. Xolair is used when asthma symptoms are not controlled by asthma inhaled steroid medicine. It is not a rescue medicine for treating an asthma attack
I myself was boardlerline for meeting the criteria, though I am not an allergic asthma my condition is effected by some allergies. Following blood tests (the tests measure the presence of IgE antibodies – IgE, short for “immunoglobulin E,” is the antibody that triggers allergy symptoms) it was found that my IgE levels were in the range that allowed me to start the Xolair.
Tomorrow (Monday 4th September) sees me going back to hospital for another round of injections, these will be my 18th set of injections so I feel that now is a reasonable time to review how things of gone and consider how much the Xolair injections have helped.
When I first started the Xolair I had to be kept in hospital for 4 hours following the injections for observation. During those 4 hours I suffered from no side effects, unfortunately 24 to 36 hours later I did, the joints and muscles in my legs (and to a slightly lesser extent my arms) became very painful. This lasted for 3 days during which time I had difficulty walking and sleeping. After 3 days the pain disappeared overnight and I had no other issues. These pains are a known side effect of Xolair.
What are the known side effects?
anxiety or fear, feeling like you might pass out
flushing (warmth, redness, or tingly feeling)
chest tightness, wheezing, feeling short of breath, difficult breathing
fast or weak heartbeats
swelling of your face, lips, tongue, or throat
bronchospasm (wheezing, chest tightness, trouble breathing)
fever, swollen glands, rash or itching, joint pain, or general ill feeling
chest pain spreading to your jaw or shoulder, coughing up blood
sudden numbness or weakness (especially on one side of the body), problems with vision or speech
pain, swelling, warmth, or redness in one or both legs
new or worsening cough, fever, trouble breathing
skin rash, bruising, severe tingling, numbness, pain, muscle weakness
itching, mild rash
joint pain, bone fractures
arm or leg pain
dizziness, tired feeling
cold symptoms such as stuffy nose, sneezing, sinus pain, cough, sore throat.
Following my 2nd set of injections I again had some leg pain but nowhere near as severe. I thought things were improving but then during my 4 hour wait in hospital for observation following my 3rd or 4th set of injections I went into bronchospasm and for a short while I wasn’t well at all, fortunately back to back nebulisers got things under control. I was then admitted to hospital for 48 hours for observation. It was during this period that my consultant thought that it would be better to cease the Xolair treatment. Despite showing slightly better control of my asthma following the injections the risk of the side effects were exceeding the benefit of the treatment.
After my release from hospital though things suddenly improved dramatically with my asthma, my peakflow reached its highest level in 30 years, I felt full of energy and life, I wasn’t becoming breathless at all, I was sleeping better and my salbutamol inhaler was hardly ever used. Following some pretty intense discussions with my medical team (which included me begging them to let me continue on the Xolair), my consultant, against her better judgement agreed to give me one more set of injections. I was delighted even though she would only allow me to have these injections under strict observation and would require a 4 day hospital admission.
By now I had to carry an epipen with me as a precaution against the side effects of the Xolair, I was also having to take another 4 days off work on top of all of the time I’d had off sick in the previous 12 months because of my asthma (this was now becoming an issue with my employer). I knew though that I needed to give the Xolair another chance, this despite been told that my side effects were becoming so serious that another round of injections were not recommended, there was a real risk that the side effects could become worse and could even kill me. I had to sign paperwork stating that I was having the treatment against medical advice and that I knew the risks. It was quite a sombre mood in my hospital room leading up to the injections but fortunately things went well, no bronchospasm, not leg pains, nothing. I went home 4 days later feeling very happy and relieved.
The treatment continued and though my asthma was not quite as brilliantly controlled as it had been following the 3rd or 4th injections and bronchospasm it was still an improvement against the same period the previous year. The big test was to come as winter approached, the time of year where my asthma is badly controlled and I usually spend months in hospital. I did have on admission in January but I recovered pretty quickly and despite having a major scare when suffering from severe breathing difficulties at home 12 hours after my February injections the winter months weren’t too bad. We don’t know what caused those problems following the February injections, it may have been as a result of change in my diabetes treatment, possible the Xolair was to blame or maybe it was just a very short, sharp asthma attack. Either way I recovered quickly and was back to work a lot sooner than that usually happens in winter.
As I have written about on quite a few occasions though my asthma is changing, we do not know whether is because of or despite of the Xolair. I have had fewer hospital admissions, I have had fewer bad attacks and I have had less time off work (apart from a few weeks ago when I suffered back toto back chest infections). Those are all positives, the problem for he though is the negatives, I never seem to feel quite as well, my good days where I display no symptoms are far fewer, I feel as though there are more frequent symptoms but not as severe. Every day seems a struggle, I constantly feel fatigued and in general feel rotten most of the time. One of the aims of starting on Xolair was to reduce my prednisolone dose, unfortunately this has not happened. My peak flow seems to be more erratic, it is all over the place, never reaching the previous highs or lows but it never seems stable and there’s is no pattern to it. The thought of feeling like this for the foreseeable future worries me. My consultant believes that my asthma is actually becoming worse and the Xolair is helping, basically she thinks that without the Xolair I would be a lot worse.
Despite all of these problems though I have recently had a really good spell for 2 or 3 weeks now, this is the best I have felt in over a year and the most prolonged good period that I have had in ages. Usually the Xolair gives me a lift each month immediately following the injections and then the benefits seem to decline over the final few days leading up to my next injection. This is happening this month as well, as already stated I have felt great in recent weeks but I have just started to go slightly downhill over the last few days, my sats are declining, I am having to use my relief inhaler more often and and I am showing more symptoms. The weather has become more changeable with temperatures varying wildly throughout each day, this usually causes me problems, add to that the fact that I am due my injections tomorrow it is hardly surprising that I am just starting to struggle a little.
So do I think that the Xolair is helping me?
I’m not totally sure, it is certainly changing things and if the Xolair is the reason behind less hospital admissions and less time off sick, I am quite happy. It is just that I am not particularly happy with what is happening with my asthma in general, the big question is whether the Xolair is to blame for these changes or not. The only way to find out would be to stop the injections but at the moment I daren’t do that.
It will be interesting to see how I get through this winter!