Hi just wondering if anyone out there is on Xolair, I got a phone call through today to say that I am starting on Friday, yey, they applied for it in August, I suppose am excited because everyone keeps saying it is going to make a huge difference, but am nervous too as don't know really what that ""huge difference"" will be? So yeah as said was just wondering if anyone out there is on Xolair and if they minded sharing their experiences with me =)
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Good luck in starting xolair! I havent ever taken it, so cant really advise, but it has been mentioned as a possible for future treatment so i'd be really interested in your experiences! and also what 'criteria' you had to meet before you could apply to go on it? any info you have on that side of things would be really helpful! hope it all goes well!
I was on Xolair for about 2 yrs but no longer am. I did find it made a good improvement although I was still really bad just not so much (why I wasnt kept on) I think for many it can really be a huge difference thats great. I had no side effects other than itching at the injection site for a few days and could lower pred so was win/win really.
Soph I was prescribed Xolair by cons at national centre after hossie stay for battery of tests etc. Main thing is how severe is asthma and how your IgE levels are.
Thank you for both replying, sorry it has taken so long to say thanks it was really nice of you both to reply. I have now started my Xolair, have 3 injections every fortnight, so far no side effects really, get quite sick on days of injection, I find the joints in the arm of the injection hurt for a few days so my elbow, shoulder, wrist and neck are stiff to move, got dizzy and had a headache today along with being sick but am recovering from a really horrid stomach bug I had for all last week and just spent this week recovering from that, it's made my chest worse for some reason, anyway sorry I digress at the moment nothing has changed good or not good as it's early days but am feeling very positive that am taking steps in the right direction whether this works or not.
Soph I was put forward for Xolair this year as my IgE levels had come down enough for the first time to not be too high to be on it (if that makes sense, so they were silly high and now they're just high, haha!) other things were how much prednisolone I'm on, I'm not on it all the time but I have a stock at home and in general end up on 40mg for 7 days each month, and how many hospital admissions I've had in the last year, now I really hate going to hospital so I try my hardest not to end up going in (which I know can be stupid but I really hate going in but actually it works in your favour to get on Xolair if you don't be stubborn and get help from the hospital) so yeah that's it IgE levels, steroids, hospital admissions, I think. And when they start giving you the injection they work out the dosage based on your weight and IgE's, I think you can have 1 to 4 injections either fortnightly or 4 weekly, like I said I have 3 injections every 2 weeks, I'm 55kg and I think I have pretty high IgE so I think that's why I'm on 3 injections.
Hope this helps if you start on Xolair let me know and I can tell you about any progress I've made, sorry Hannahrose you'll know all this anyway, it's such a shame it didn't help enough, although if it brought down your steroid intake it's a pity you didn't get to carry on purely for that, I hope there's something else out there that is either working for you or that is coming along for you.
All the best and hope you're all keeping wrapped up in this lovely spring weather we're having!
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