In addition, I'm on constant pred (40mg), Synbicort which isn't much use, Salbutamol inhaler as required and not allowed a home nebulizer as my asthma is dangerously unstable. I take a range of other medication for asthma but cannot for the life think of the bizarre names.
Take morphine (50mg) and pregrablin (150mg) and various other painkillers for the Scoliosis (made painful from car crash, now in wheelchair) which doesn't help my asthma, but needs must. Any advise on the Xolair would be hugely beneficial though.
Hi Darius,
I was offered Xolair about 18 months ago, although I ended up not needing it because we found an underlying reason why my asthma was so unstable and treating that made everything much better.
Xolair reduces the amount of IgE around in your body. In order to qualify for it your starting IgE level needs to be between certain boundaries, and you need to have a proven allergic component to your asthma. You also need to have a certain number of hospital admissions per year (which you clearly do) and your asthma needs to be unstable even on high doses of inhaled steroids, montelukast and so on, or require constant high dose oral steroids to get any kind of control.
Then they calculate your dosing schedule based on your IgE level and your body weight. You go to hospital to have an injection once every 2 or 4 weeks (depending on your calculated requirements). Usually this will continue for at least a year, and they'll keep measuring your IgE levels to see that they are falling.
It's not 100% guaranteed to improve your asthma - not all allergic asthma is IgE driven, even in people with high IgE, but it does significantly help many people and is absolutely life changing for some.
Some people are allergic to the injections so they have to be discontinued (this is why they are given in hospital, or occasionally at a GP practice). Some people are too heavy to have the treatment as the dose they would require isn't safe - but in those cases there would be a chance to lose weight if required and then be assessed again.
All the checks have been done for me to to forward with the Xolair treatment. I had to wait for funding but because by the time I get out of hospital, I'm back in with a horrific asthma attack. My three main allergies are; fur (animals), grass and dust. I have been told a number of things can set it off, even a hot or cold drink, as my asthma is that unstable. Still in hospital at the moment, waiting for the asthma manager to come and visit me to get the injections started.
They made me aware I would be having them every two weeks, but it would have to be at the hospital and not my GP. I did call the Asthma UK helpline as a few consultants have told me that in all their time, I'm one of the worst cases of asthma they have come across, especially for a 20 year old. Thanks for taking the time to reply, I understand more than I did now. I also take large doses of steroids and I also take the montelukast as you stated above.
Fingers crossed, will keep you updated. (Never used something like this site before, very beneficial.)
Darius
Hi Darius
I have worked with children & young adults for over 8 years now taking Omalizumab which is Xolair.
It is revolutionary for some people but as others have said it does not work for all.
However, if you are the right candidate you have a good chance it will help i.e taking the regular meds, taking them regularly & properly & fit the other criteria.
I would say the older you are the longer it sometime takes to kick in
It will not take asthma away but our patients found that it made their elevation of symptoms less both in severity & length
it is a pain (sorry about the pun) getting the injections both in actually injections & going to the appropriate hospital for it. However I can honestly say that even our very youngest did not refuse to come if it was working for them so that says something doesn't it?
Good luck & hope you are one of the ones who it works for
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