I just started on Xolair after fighting for year to get it. Seeing a private consultant who did all the necessary tests helped, big time. May I ask, in your experience, how long it took you to see the effects, and how you knew it has started to work?
The injections are 600 mg once a month which must mean a remarkable lifetime of the protein in the blood. I've been on pred 10 mg for 6 months (with the side effects) + 2 steroid inhalers + montelucast. Going for a single day w.o. chest tightness, "bubble in the lungs", being able to sleep and not waking up every hour, being able to walk outside w/o a respirator (not asking for running or cycling), being able to go to work etc would be great, but I forgot how it feels. I've had Xolair in the US (2 shots a month), but it was 10-15 years ago. Back then I was healthier, and could work through asthma, so was better at ignoring symptoms, could not remember when I started to feel better, it just happened gradually.
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Xolair takes 3 months to build up to steady levels in the body, which is why the initial trial for it is 4 months long (it gives it the time to build up and then an extra month to get an idea of whether it is likely to help, although it can take longer than this in some). While the levels are building up you might start to see some benefits as it takes effect but I was told not to be disappointed if I didn’t notice anything for a while!
It took me about six months to notice a difference. The main change for me is that I'm on prednisone less often. I am still crazily allergic and asthmatic to everything but now I am on a course or pred 1-2 times a year instead of 3-5+ times like before.
There are a lot of great threads on Xolair in the archive if you search the term 'Xolair'. Tons of us are on it and have shared thoughts on efficacy, side effects, long-term use etc.
Hilary -- when did you realize that you might be able to get off prednisone? I am quite paranoid to change anything at this point
May I also ask how you convinced them to keep you on Xolair despite the fact that it took it 6 months to work? My review is in 4 months; i.e. if they believe it does not work they may just refuse to keep giving it.
I understand that I still will have to be vigilant with allergen avoidance, taking inhalers etc. I am just hoping to get off steroids and to get back to work
Sometimes if there are signs of initial benefit at 4 months but not enough to definitely continue longer term they extend the trial period to 6 months. The first time I had xolair I also had a 6 month trial before having to stop it (the trial was impacted by me having multiple infections due to an immune deficiency)
JS, may I ask what the next line of action was in your case, after X had failed to deliver? Or did it work once the infections have resolved themselves?
I am not sure what sustains the inflammation in the absence of allergens triggers. I was living in, essentially, in sterile air for the last 3+ months.
Essentially I kept ending up in hospital until I had enough documented infections to qualify for treatment of my immune issues without further investigations (they’re unsure if it’s primary or related to steroids but couldn’t ever get my steroid dose low enough or me stable enough to do the required tests).
They did refer me to another tertiary centre to consider bronchial thermoplasty (Glenfield had paused their service and wanted me to see someone more experienced in it) but decided that that was too high risk with the infections.
Once the infections were more under control it gave them a better idea of what my allergic asthma was like - turned out to still be massively out of control as I was having attacks that were sort of a combination of anaphylaxis and severe asthma every time there was a jump in pollen counts. So then asked to retry xolair and they agreed as they were out of other ideas! This time round the benefit has been much clearer, still have resus and hospital trips about monthly but they respond much better to treatment and I’ve managed to cut down my steroid dose by a third.
I’m unsure on the ongoing inflammation issue! In theory once the inflammation has settled with treatment if triggers aren’t around then things should stay better, but lungs and bodies don’t often like to follow the theory! Or it just may be that things haven’t been fully settled by treatment yet
coincidentally, I was just looking for the keywords of "self-sustaining inflammation asthma" on pubmed, and it appears that, once left untreated for a long time, inflammation can self-sustain even once the original allergen is gone. Eosinophiles are the cells responsible for that, but other than that the mechanism is uncertain. I've been breathing sterile air for the last 3 months and this has kept me away from the hospital. I haven't had major asthma attacks, but the discomfort, the air trapping, and the chest pressure all remained, indicating ongoing inflammation. I hope Xolair can improve it
I went off prednisone when I finally started to be able to breathe normally for a few weeks on end. I'm in France so I didn't have to do the 4-month review you did. That sounds frustrating. Hopefully like Js706 said if there are some signs of improvement they'll let you stay on it!!
I'm hoping that my consultant prescribes me Xolair. I've heard so many good things. I'm a 70 year old, not over weight and love walking. I have had several exacerbations over the past year and think I need something new! At the moment I am on Relvar Ellipta, Ventolin and Montelukast. Here's hoping!
For me, I started on Xolair during a difficult time so it took almost a year to see long term effects. But it was wonderful to have an asthma exacerbation and only need to be on prednisone for 12 days.
I just had my 67th dose last week. I now go 9-12 months between exacerbations and prednisone needs. The last time doc did a 5 day burst and that was all I needed! I'm still on 2 inhalers and other oral medications because I still have severe persistent asthma and bad allergies but quality of life is much better 👌😉
Thank you, Tree. Considering that it took a year to see an effect, I wonder how you managed to convince the paperwork-pushers to allow you stay on it for all this time. I have only 4 months to shown an improvement before they take me off it. I mentioned to clinic that if it's a matter of cost, I am willing to pay for up to a year to see if it works. I was "reassured" that it's not a matter of cost, but whether it helps or not. Funny: when I was on an inhaler that did not work, they were happy to renew w/o me asking, indefinitely (and never asked if it worked or not until I told them that I wanted another one).
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