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Omalizumab - Xolair

Hi everyone

I have had Asthma all my life and now I am approaching 50 I have been referred back again to a consultant for further investigations as my Asthma has become more "troublesome" and whereby I normally expect October to March to be the tricky months, I am finding every month is bringing its challenges. He tells me this week I have Allergic Asthma and whilst I have always been classed as Atopic (have Eczema too) I have always managed with Anti-Histamines

Due to a Respiratory Arrest and Blood Clots years ago apparently I could qualify for the above treatment but I have read so much frightening stuff about it, namely Anaphylaxis once it has been administered?

Anyone able to reassure me or tell me more?

Sally :)

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I've never had it but now a few people that have. The had the injection at the hospital and waited for 2 hours after the first injection and 30 mins after the following ones. They didn't have any reactions what so ever.

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I have been on 4 Xolair jabs every 4 weeks for 3 years now.

Since I have been on it I have stopped having nebulisers (4 a day) I stopped taking Uniphyllin tablets, I had a couple of exacerbations after I started but they were not as bad as previous ones, I wasn't hospitalised, just prednisolone & antibiotics.

My peak flows and spirometry have gone up to good levels.

I have not had any bad exacerbations or days off work for the last 2 and a half years.

I hope you get the same results, you normally have to wait at the hospital for 2 hours after your 1st dose of Xolair, after that you normally have to wait about 20 minutes just to check there is no reactions.

I have had no reactions with my other meds for blood pressure and acid reflux.

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Ah thanks for the vote of confidence TuckBox! a massive part of me hopes I can have the medication but similarly I am panicking about reaction to it! However I will be in the right place if I do of course!

You have given me hope of living without the incessant need for nebulisers etc!

:)

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I'm on it for just over four years. The thought of anaphylaxis scared the pants off me, but I've had no side-effects whatsoever and it has markedly improved my asthma, at least until about a year ago when it started going downhill again. They're increasing my dose by 50% from next time, so I have high hopes of improving further.

The odds of anaphylaxis are extremely rare, though of course they have to warn you. You'll be well monitored and looked after, so I think it's worth a go.

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Three years, not four! Meant to say every four weeks :)

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Thanks too for your reply

is it an injection into the muscle or straight into the vein?

What is the frequency you have it can you tell me?

x

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It's subcutaneous, so just into the skin of the upper arm. The needles are designed to be very fine as injections are regular and no-one wants ongoing discomfort, and quite honestly I hardly even feel them. They're nothing like the flu jab for example, which can leave your arm aching for a week.

Your dose and frequency depend on a correlation between your weight and your IgE level, which is determined by a blood test. I was receiving 300 ml every four weeks, which is two 150 ml jabs, one in each arm, but I'm going up to 450ml so I presume I'll have two jabs in one arm and one in the other. Some people have jabs every two weeks instead of every four.

The whole thing sounds a lot scarier than it actually is. I could find no-one to talk to before starting Xolair, so please feel free to ask anything you like. Do you know what hospital you might be going to?

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I'm in Wiltshire and know where I will be going but it's early days as I only saw the consultant this week and back in 8 weeks when I would have had the decision from NICE

this morning I struggled again and it's days like this I feel low with it

I take the normal stuff you know inhalers etc but I just long for a prolonged period of just feeling better if you know what I mean

I work full time and feel exhausted before I even get to work some days

Roll on Summer!!

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I know exactly what you mean! Fingers crossed Xolair will work for you :)

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I'm on omalizumab, every two weeks max dose(600mg? 4 jabs) ..how lucky. First few rounds were fine sometimes I felt a bit faint and ill afterwards but that goes away quite quickly. Had a few rare side effects that are being investigated. But other than that it's working. Can do way more things. Got a bit of a life now

I know that it doesn't work for everyone but if you don't try you'll never know. Hope it goes okay

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Hello, Just come across this post after recently joining. I've been on Omalizumab since 2014 and not got the results I had hoped for sadly.

I'm 54 and had asthma all my life, allergic and eczema but had worsened the last few years also worsened worth stress and anxiety. 2 years ago I was referred to respiratory consultant and tested for Aspergillus which came back positive and high. I've always lived in new build homes, no mould except when I was 5 - 7 years old.

I wondered how you are getting on with the injections. I get 600mg 4 injections every 2 weeks and am on symbicort 400 and Ventolin inhalers and just started an seebri which is bronchodilator used for COPD with as required nebuliser. I was on permanent steroids for two years with taper off in November 2015 but have had them 3 times since then.

I just wish the injections worked as I'd read they did for some people being able to stop inhalers etc. Just after reading your post I wondered how your asthma is and are you still having injections.

I think after 2 years I would have seen the improvement by now though. 😯

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Hi Ive been on this drug for 4 years now and only had one hospital admission when I first started it.Im now in the process of coming off years of long term predislone which has it's problems but never thought I would and no other drugs other than inhalers.i sleep at night with no asthma symptoms and have lost weight.Good luck

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