Xolair, the good, the bad and the worry

My asthma has deteriorated a great deal over the last few years and I have tried most tablets and inhalers that are available, some with more success than others. Ultimately though I know that there is no cure and it is all about control. I take my condition very seriously, I try not to allow my severe asthma control my life but I am a lot more sensible now than what I used to be, I know what my limitations are and I try to live my life accordingly. Years ago I could be struggling with my breathing but would still travel to the other end of the country and stand on a football terrace open to elements, driving rain, gale force winds and sub zero temperatures, it didn’t matter how I felt, how far the journey was or how bad the weather was, football was my life. It still is, but the difference is that if I am not well enough I won’t go, I’ve realised that it wasn’t fair on the people that I travelled to the game with, not fair in my family who would be sat at home worrying about me and finally it just wasn’t worth the risk. It hurts now that I miss so many games but it has to be done. Despite taking all my medication, despite a number of lifestyle changes and despite having a little bit more common sense my health has continued to deteriorate and my hospital admissions continue to increase.

Due to these on going problems my consultant decided to carry out some tests to see if I met the criteria to start having Xolair injections. Xolair is used to treat allergic asthma and though my asthma is affected my allergies I would not describe myself as an allergic asthmatic. The results came back very borderline but after having retests, getting referred to a professor in Sheffield and numerous conversations it was decided that I could trial the Xolair.


The Xolair would be administered via 2 injections in hospital every 4 weeks, this would involve me remaining in hospital for approximately 4 hours following the injections for observation. Xolair has a good success rate, however there are side effects and these are varied and a fair percentage of patients do suffer from these side effects. Before starting the trial I was given an information pack on the treatment which is also known a Omalizumab, this pack listed the following information as regards to side effects.

“What are the possible side effects of XOLAIR?

XOLAIR may cause serious side effects, including:

See, “What is the most important information I should know about XOLAIR” regarding the risk of anaphylaxis.

Cancer. Cases of cancer were observed in some people who received XOLAIR.

Inflammation of your blood vessels. Rarely, this can happen in people with asthma who receive XOLAIR. This usually, but not always, happens in people who also take a steroid medicine by mouth that is being stopped or the dose is being lowered. It is not known whether this is caused by XOLAIR. Tell your healthcare provider right away if you have rash; chest pain; shortness of breath; or a feeling of pins and needles or numbness of your arms or legs.

Fever, muscle aches, and rash. Some people who take XOLAIR get these symptoms 1 to 5 days after receiving a XOLAIR injection. If you have any of these symptoms, tell your healthcare provider.

Parasitic infection. Some people who are at a high risk for parasite (worm) infections, get a parasite infection after receiving XOLAIR. Your healthcare provider can test your stool to check if you have a parasite infection.

Heart and circulation problems. Some people who receive XOLAIR have had chest pain, heart attack, blood clots in the lungs or legs, or temporary symptoms of weakness on one side of the body, slurred speech, or altered vision. It is not known whether this is caused by XOLAIR.

The most common side effects of XOLAIR:

In adults and children 12 years of age and older with asthma: pain especially in your arms and legs, dizziness, feeling tired, skin rash, bone fractures, and pain or discomfort of your ears.

In children 6 to less than 12 years of age with asthma: common cold symptoms, headache, fever, sore throat, pain or discomfort of your ear, abdominal pain, nausea, vomiting and nose bleeds.

Go to the nearest emergency room right away if you have any of these symptoms of an allergic reaction:

wheezing, shortness of breath, cough, chest tightness, or trouble breathing

low blood pressure, dizziness, fainting, rapid or weak heartbeat, anxiety, or feeling of “impending doom”

flushing, itching, hives, or feeling warm

swelling of the throat or tongue, throat tightness, hoarse voice, or trouble swallowing”

Not the greatest potential side effects but all medication has potential of nasty effects so I wasn’t too concerned and obviously they would be observing me for 4 hours and I would be in the right place if anything went wrong.

At the time of beginning my Xolair trial I was in real danger of losing my job following another winter where I spent most of my time in hospital or at home recovering rather than at work. To say that I was desperate for the Xolair to help me would be an understatement, the other added bonus would be that if it worked I would be able to decrease my steroids which would help in a number of ways such as better diabetes control and hopeful help be lose some weight.

I received my first injections and sat and waited for 4 hours, my sats were checked regularly,  I was given a cup of coffee and a sandwich, everything was going well. I was allowed to go home and was told to contact the respiratory department should I have any problems or concerns. For 24 hours I was ok, then I started to suffer with pain and stiffness in my legs. This became pretty bad and at one stage I was having difficulty walking. Within another 24 hours though the pain subsided and within a other day I was pain free. I reported this to the respiratory team and following discussions with my consultant we decided that the leg pains was probably a result of the injections but we would try another round of injections as planned 4 weeks later.
I nervously returned to the hospital 4 weeks later, my peak flow had improved slightly and I felt better on my self so I was desperate to avoid a repeat of the side effects which would jeapordise the chances of me continuing the treatment. I had the injections, waited 4 hours and everything was fine. I nervously went home and waited to see what happened. After a few hours I had some discomfort in my legs but nothing like the previous month. I reported in and everybody was happy. My sats slowly improved over the 4 weeks and I felt as well as I had in years.

Onto the 3rd round of injections and this time I attended hospital in positive mood. I had the injections and sat and waited with my customary cup of coffee and sandwich. I was feeling fine, my sats were ok and I was starting to look forward to going home. Then things started to go wrong, I felt my chest tighten, I started to struggle for breath, my sats went mental, my oxygen level dropped by 7 or 8 within minutes, my blood pressure almost doubled and my heart was racing. I was moved into a treatment room, given nebs and my consultant was called. Back to back nebs helped and after a hour or so my sats began to return to something like normal. My consultant was still concerned and I was admitted. I was gutted, I knew that the trial would almost certainly be stopped. I remained in hospital until the following day and as I had not had anymore problems I was allowed home with news that I expected but was dreading.

To say that I had an interesting few weeks would be an understatement, my peakflow went through the roof, my previous best was 400, I was now regularly topping 500. I had a new lease of life, I had more energy, I was doing more, my inhaler was hardly needed and the nebuliser was sat collecting dust (not really). I realised that despite my incident following the 3rd injection, the Xolair was working. I contacted my consultant who agreed to meet with me to discuss. Time was an issue as to get the best out of the injections they had to given every 4 weeks, ideally within a 24 -48 window. I arrived at the hospital and met with my consultant and a couple of the respiratory nurses. I begged and pleaded with them to give me another round of injections. They were all opposed to it. I was told in no uncertain terms that the side effects were becoming more severe and the bet reaction could be worse,  I was told that it could kill me. I continued to argue my case, I had felt as though I had led a normal life for the previous few weeks and I didn’t want to go back to how I had felt before the injections. Eventually my consultant agreed to allow me another round of injections, there would however be stipulations, I would have the injections the next day (as we were just over 4 weeks), I would gave to be admitted and remain in hospital for 4 days for observation and I would also have to sign a form saying that I was aware of the risks and was having the injections against medical advice. I was told to go home, pack a bag and return that evening, I was to receive the injections the following morning.

I went home and told the wife what was happening, it then hit me, what the hell was I doing, I still thought it unlikely but in theory it could kill me and I was going against medical advice. I decided to leave the worst case scenario out of the discussions with the wife.

I returned to hospital and prepared for my injections, there were some delays, my consultant tried to tell me out of it, as did a couple of other people. My respiratory nurse refused to give me the injection as to quote her “she didn’t want me on her conscience if it went wrong” It was beginning to hit home but I wasn’t backing down now, I signed the forms and finally another nurse arrived to administer the injections. To be honest it was a relief once I had them, at least there was no going back!

It was a strange and long 4 days, every time I coughed, grimaced or anything out of the norm I was surrounded by nurses. The 4 days passed, I had no problems at all.  My consultant came to see me and she agreed that I could continue on Xolair.

This was last July, I have continued with the injections every 4 weeks, the improved health has continued but has leveled out somewhat. I managed to get down to 10mg of Prednisolone per day which was my lowest in 6 years! In previous years my health always started to go downhill as the colder months of winter arrived and by November I would be starting with hospital admissions. This winter my breathing did start to go downhill but nowhere near as bad as usual, that was until January when I finally succomed.

I was continuing with the Xolair though and things were looking okay, that was until Monday 20th February, I had only been out of hospital a couple of weeks but my breathing was good and was hoping to get back to work pretty soon. In fact the thing delaying my return to work was actually my diabetes. Following the January admission we had increased my steroids and this had really complicated my blood sugar levels, one minute I was stupidly high and then the next strupidly low and having a hypo. My GP took me off insulin and gave me something else, this new medication started on the same day as my Xolair injection. That night I had a severe asthma attack. We don’t know if the new diabetes medication caused it (I was taken straight off of it as a precaution), whether it was the Xolair or whether it was a random asthma attack. Either way my consultant is worried, my next injection is due next week on the 20th March, she is prepared to let me have the injections but she has insisted on admitting me again. After my injection and hospital admission she wants to discuss whether we continue or not.

To say that I am worrying about next week would be a massive understatement.

If you would like to know more about Xolair follow the links below:

Asthma UK

Xolair.com

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