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Omalizumab - Xolair

AuntSally19 profile image
12 Replies

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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AuntSally19
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12 Replies
Katt-37 profile image
Katt-37

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.

TuckBox2 profile image
TuckBox2

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.

AuntSally19 profile image
AuntSally19 in reply to TuckBox2

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!

:)

pucageorgie profile image
pucageorgie

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.

pucageorgie profile image
pucageorgie in reply to pucageorgie

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

AuntSally19 profile image
AuntSally19 in reply to pucageorgie

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

pucageorgie profile image
pucageorgie in reply to AuntSally19

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?

AuntSally19 profile image
AuntSally19 in reply to pucageorgie

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!!

pucageorgie profile image
pucageorgie in reply to AuntSally19

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

TheOriginalSim profile image
TheOriginalSim

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

Matti1 profile image
Matti1

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. 😯

Foodstuff profile image
Foodstuff

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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