xolair

[M-D-F]

I have just completed four months worth of xolair (two injections per month) and have a consultation next week.

Other only needing one "dose" of prednisolones over a five month period, (this is an improvement) there has been no real improvement in my overall breathing pattern, (morning peak flow 170 evening 250) but there have been slow deteration thereby requiring steroids.

Before the xolair I would use Prednisolnes five times a year (8 pills for six days reducing as you do)

My question is am I expecting too much, from this drug, or is it not for me?

[Shellc]

Hospital will ultimately decide if it’s suiting , I’ve heard people say it rubbed their life around , for me it didn’t work I felt like I had brain fog on it and had episodes where I completely lost my breath, very frightening , there are other treatments similar that may help

[M-D-F in reply to Shellc]

Thanks, other than keeping my breathing within that range there is no noticeable improvement.

[Matman]

If you have the time and patience to read a an in-depth medical article that discusses Xolair (alongside other Biological Meds) you’ll find the link to it in my Post on the following page.

Advanced warning though, the article is very technical.

healthunlocked.com/asthmauk...

[M-D-F in reply to Matman]

I started to read it, and unfortunately gave, thanks for the link anyway.

[Joan_Public]

Hi M-D-F

I think that they assess whether xoliar to continue the treatment by taking into consideration a number of factors, which includes the results on various lung functions tests, whether you have had less exacerbations and need for steroids while you have been on it and also your answers to the quality of life questionnaires

I had long chat with cons and resp nurse about this subject last week as they are offering me to try xoliar.

Have you had many side effects?

Less courses of steroids is surely a good thing.

Best wishes to you.

[M-D-F in reply to Joan_Public]

When I say waiting to be released, they keep you under observation for a while, and you get a chance to talk to the others

[Joan_Public in reply to M-D-F]

Hi, M-D-F Thanks for your reply. It would be good to chat to others and see how they are getting on with it while I am waiting. I do feel quite isolated with asthma as I don't know anyone else who has it the way I do. They all seem to manage fine on just ventolin and look at me like I'm nuts or really just being lazy when I can't manage stuff.

Sorry to hear you've been so poorly again. I do hope things improve for you. I hope you have a good team at the hosp who you can discuss continuing with xoliar. They told me after 16 weeks is when they assess it and that there is another similar med called Nucal( ????)they can try if no improvement after this time. The trial period for this med is 52 weeks tho. That is why they said they recommend xoliar first. Could you ask them about whether that might be suitable?? They check your numbers of white blood cells first and base it on that, I believe.

I just started steroids again over the weekend because I went down to 220. Honestly, I would like just one day where I don't have to think about asthma!!

I think I will give the xoliar a go now myself ...

Best wishes

[M-D-F]

Sorry for the delay, I had no noticeable problems, whilst waiting to be released, others have said they felt drowsy for a couple of days.

My consultant has decided to give another trial.

[M-D-F]

Further to this story I recommenced xolair on the 25th eight days later my peak flow went down to 150, so I have started preds. So I would conclude xolair is not for me.

[M-D-F]

If you get put on the list go for it.

[Joan_Public]

Hi, yes sorry for late reply; i didn't notice your post. Thats good you are going to try it again. I hope you can feel some improvements this time.

For me, it sounds a bit scary, but at the same time, I am so fed up with it all right now. The courses of steroids are becoming ever closer together and I would really like to avoid taking them continuously, so I hope that the health board agrees to it.

Do you know anything about the process of what happens next? The consultant has recommended it because my asthma meets the various descriptors about iEg levels and what not and says he is going to bring it up at some kind of meeting? Can the hospital managers / finance departments turn it down because of budgets etc?

[M-D-F]

I think you have to have site back and wait to be called up to be put on the course.