I feel that I maybe reaching a crossroads as to where my asthma medication goes next. I started having monthly Xolair injections a year ago and we were hopeful that they would help. It took 2 years to get me onto the Xolair as I was borderline when it came to matching the criteria. Xolair is used to treat allergic asthma and though allergies can trigger my asthma I would not consider them to be my main problem. Xolair has produced some terrific results for many sufferers while others have not seen any benefit at all. When I started on the Xolair I did suffer from a number of side effects, following my first set of injections I suffered severe leg pain and I struggled to walk for a few days, following my 3rd set of injections I suffered from some severe respiratory problems which resulted in an hospital admission. After this my consultant decided to end my Xolair treatment as she beleived that the risks outweighed the benefits which at the time seemed true. Then in the weeks following the 3rd set of injections my asthma improved tremendously, my peak flow reached its highest level in years, I felt much better and full of life. Following a lot of soul searching and some lengthy arguments with my respiratory team (who were all against continuing as they had genuine concerns that another reaction to the injections could kill me) it was decided that I could have another set of injections but I would have sign a waver stating it was against medical advice and I would also have to remain in hospital for 4 days following the injections for observation.
I managed to get through the injections with no side effects and my health continued to improve to such an extent that bu November I still had excellent peak flow readings and even better still I managed to reduce my prednisolone to 20mgs which was my lowest in 7 or 8 years.
A the winter kicked in I went downhill slightly in December and I ended up back in hospital in January following a bad attack which was worsened by a chest infection. Since then, despite no further hospital admissions (which for me was a massive improvement on previous years) and I managed to get back to work much sooner than I had done after suffering previous attacks and hospital admissions, I feel that the Xolair is not as effective as it was 12 months ago. This may seem like a strange thing to say considering the reduction in serious attacks and admissions but the trouble is that in my opinion I feel worse now than what I did 12 months ago. Every day is a struggle, I feel run down, I am shattered, I have no energy and I keep having constant asthma symptoms, I am always tight chested, I seem to cough a lot more, I am short of breath and I even wheeze quite a bit now which is something I had previously only done on rare occasions. I seem to be taking a lot more of my reliever inhalers and nebuliser, my peak flow rarely gets to 60 per cent of what it was doing 9 months ago and is slightly less than what it was prior to commencing the Xolair. The other problem is that my prednisolone dose has not dropped below 30mg this year which is very frustrating.
So as you can tell it would appear that the bad days aren’t quite as bad as previous years but my good days are fewer and not as good as they have been previously. The fact that the prednisolone dose is still so high is a concern and it was hoped that the Xolair would help me reduce the prednisolone dose. Therefore it obvious that the Xolair isn’t really helping………
…….or is it, I have had fewer days off sick and fewer hospital admissions!
It is fair to say that I am confused as to what impact the Xolair is having but I am worried to voice my concerns to my consultant who would probably look to take me off Xolair has she still has concerns about the side effects that I have suffered following the injections (earlier this year I suffered respiratory problems once again following my injections but this also coincided with me starting another drug which may have been responsible). As a result of side effects etc I have been admitted 2 or 3 times for observation and on the other occasions even though I wasn’t admitted I had to remain in hospital for 4 hours to be observed before been allowed home. Even following my last set of injections last week my breathing was so bad that they wanted to admit me (I beleive though that I was no worse following the injections than I was before and so I am not blaming the Xolair). This amount of time that I need off work for the injections is now also a problem as I have to take the day(s) off as holiday or without pay (this totals 13 days per year as a minimum plus additional data where I am admitted for observation). The hope was that by now I would have my injections and be allowed out with the hour which in turn would allow me to go to work following the treatment.
I feel that we are now in a similar position to last year where we have to evaluate whether the benefits outweigh the risks and I am honestly not sure!
For more information on Xolair and other medication / treatment for severe asthma, click on the link below: