I’m waiting to hear if my asthma profile is a good match for Omalizumab then (if offered it) I’ll need to decide whether or not to take up the invitation.
Wondering about two things:
1. Side-effects
2. Health Impact if I later need to come-off it (i.e. can you end up with worse asthma than before you elected to take this treatment - and do things improve once off it for a few months)?
Thanks in advance for any comments.
Hi
For me whilst on it my I had very little side effects (mild headache the day of/after injection). Month 6 I got angioedema (swollen lips) and hives with an odd time frame (2 weeks post), happened again after the 7th dose so it was stopped.
When I stopped (July) I became ‘more’ allergic to my allergens for a couple of months but that seems to have calmed down now (I hope anyway 😅).
My asthma was bad after I stopped however this was during the really hot summer (was already bad whilst on the xolair) so that was probably the bigger issue until I got onto mepolizumab (which I’m now off of 😒).
Personally xolair wasn’t the drug to help gain asthma control for me. It did reduce hospital trips but I still had issues usually the week before I was due an injection (so basically an emergency trip to hosp 1 a month not multiple).
Hope that helps a bit 😅. Good luck if you do go on it - if your asthmas always playing you about its definitely worth a try!
I'm on xolair at the moment with injections every two weeks. I've had pretty much zero side effects from it so far and have been on it since July.
In terms of asthma control its been a bit of a mixed bag for me like Emma. I'm still requiring A&E trips and hospital admissions but they're becoming a bit less frequent and importantly less severe (I haven't needed to go to HDU since being on it for example).
Most importantly for me my day to day symptoms are much improved, for most of 2018 I was only able to reach my best peak flow after recovering from an exacerbation for a few days before beginning to deteriorate again, whereas I'm much more stable now in my opinion!
It may not be the right drug for me long term for my asthma but as I'm not eligible for anything else its the best I have now! And its definitely made a big difference still for me.
I can't comment on what coming off is like but if you're struggling with your asthma and your team think the drug will be a good fit I would say to give it a try! (You have a 4 month trial period on it to begin with anyway)
Dear Matman
Ok - I can only say from my perspective.
I've had Brittle Asthma for the best part of 40years - some years worse than others. Primarily I have an allergic Asthma but stress is also a big trigger for me.
Last year (2018) continued to be probably one of my worst years ever with 4 very serious admissions and I seriously doubted at a couple of stages whether I would see my birthday in November.
After much nagging from various health professionals over the last 2 years I gave in and agreed to have the xolair injections. I have to have one in each limb each month. I understand this is because of IeG levels, weight and height etc.
I have a 45 minute drive each way each month and it's a bit of a pain - but no worse pain that being blue lighted and admitted for 10 days or more at a time.
I found no real difference until about month 4 when I suddenly realised I had not had any exacerbations, and was not taking anything other than an occasional puff of Ventolin.
Now at month 7, I have had no steroids in 6 months, no Montekulaast, only occasional allergy tablets and no nose drops. I have had 2 colds which turned to chest infection but were sorted with short courses of low grade antibiotics.
My understanding is that if they work, boy they work - if they don't, then they don't. It appears I've been lucky. But I was assured that there are lots of other biological injections happening all the time thanks to the likes of Asthma UK research.
I have had a few puffs of Ventolin the last week or 2 thanks to the cold winds and some life stress but that's all.
I hope this helps and I wish you good luck in your decision making and future health,
L x
Thanks Lizzy.
I’ve recently started xolair a few weeks back, yet to notice a difference to my asthma, I did feel pretty flu like for a few days after however I am more than willing to put up with this if it eventually controls my asthma so that I can gain some control of my life and stop being admitted so often! X
When I started they told me it can take up to 3 months to build up properly in your system so hopefully you should start to see a difference after a few more injections 
I tried Xolair, had more asthma attacks it made the allergic part of my asthma worse, the nurse twice within 15 mins of the injection was taking me to A&E and was admitted to HDU. Sadly in my case, it made everything worse. I saw a lady each time who had massive results and is still doing amazing having returned to work and just been in a fun run so I guess it is a case of try it and see. One year after Xolair my asthma allergies are still a bit worse but everything else is back to pre Xolair levels. Good luck xx
Thanks very much. Sorry to hear xolair didn’t work out for you. The allergy worsening issue you touch on has been echoed by at least one other Commentor. I sometimes Chat to a GP on this Forum who is getting great results for his own specific Asthma Type (eosinophillic + nasal polyps) with Xolair. However, I’m still not entirely convinced this drug is worth trying as, although my asthma is classified ‘severe’, it seems to be less severe than for many folk I’ve chatted to on this Site (and does seem to have become a little more manageable over the last two years).
I’m really only considering it as, due to a reduction in bone mineral density, I need to reduce the Pred Bursts I take about four times a year, just in case that is contributing to it. (Osteopenia at this stage, rather than Osteoporosis thankfully). Worth having a DXA Scan to check if you’re a long-time Prednisolone User.
In case it’s of any interest to you, I also appear to be getting benefits from my Fostair Inhaler + 10mg Montelukast, along with disciplined life style changes, including: booze reduction to no more than 2 units daily; minimum 3 times weekly physical activity (only brisk walking a few miles each time but hugely beneficial); high fruit / veg daily; a daily combo of supplements consisting of Magnesium Citrate, D3, k2, along with (just two / three times weekly) fishoil, zinc and selenium (you can almost hear me rattle with that lot). Oh, and because I use an inhaler (Fostair) that includes a LABA - which depletes a lot of critical potassium - I scoff a daily banana or two to get some of it back. Hope things improve for you. Note: As supplements can interact with prescribed or other meds, worth either checking with GP or searching under your med names on drugs.com before taking any.
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