I've been on Omalizumab for I think almost two years.
I think it has made quite a difference for me - certainly I have far far less hospital admissions and they have been much shorter. However, I am still on high dose Pred and can still be very up and down, so it hasn't been a miracle cure, though things are better.
I'm moving away from London at the end of this year. Where I'm moving to I'll be a long way from a hospital and anywhere I could continue the Omalizumab. My current consultant reckons I'm going to commute to London every four weeks to continue the Omalizumab but this really isn't possible - I couldn't do it in a day and I couldn't afford the travel/accommodation.
So a couple of questions:
Would it be possible to move my Omalizumab treatment - do most hospitals offer it?
What happens with funding - would a new funding application have to be put in if it could be moved?
If I stopped the Omalizumab, what are the implications? Are there withdrawal symptoms, would I go back to how I was before I started or does it offer some long term protection?
i was on xolair for about a year, after wich it was stopped, because my two consultants didnt see ""enough"" imporvement. like you i had been unable to lower my daily pred. i was then started on bricanyl (terbutalline) tablets, and my asthma is still mych better than it was 18 months ago. i have now also been able to lower my pred, and have not been intubated for 13 months (a huge record for me)!!
sorry i cant help with your other questions as i dont actually know enough about the NHS etc.
i wish you all the best.
Rose
hi ratty,
i am new to Xolair so not sure of any improvement yet, but have been told it will soon be available in prefilled Syringes , i asked if there would be a chance of self administering to save on hospital visits,
worth asking for you, i am still trialing so not sure if it will be continued.
g xx
Thanks both and for the PMs I've had. The pre-filled syringes thing sounds interesting - I have wondered why they don't let patients do them themselves, especially as I've been taught (and done) my IM hydrocortisone - don't like doing it, but can do it.
In reality it's not going to work continuing to travel to London for the Omalizumab, so my options are transfer if possible or discontinue. I'm actually very tempted to say discontinue as it's such a time-consuming thing and I'm not convinced the benefits are enough. Would be interesting to trial a break, although maybe not the best time with winter coming up.
Would be really interested to hear if anyone has been successful transferring their treatment with xolair to a different hospital as it is possible that I will need to do this
In the next year or so due to work.
In reference to self administration and pre-filled syringes I was told by my team that despite the solution being ready made up the problem with self administration was to do with the high risk of allergic reactions to the drug even after many doses. This is why you have to be monitored after administration in a hospital with a crash trolley and doctors readily available. Again if anyone does manage this let me know as would love for this to be a possibility.
There are no withdrawal symptoms as far as I am aware but I do know of people who have experience problems after being as little as a week late for their dose so I think the long term effects are minute and perhaps even non-existent once the drug is no longer being administered. I have heard anecdotally of people being worse than they were before they started xolair once they stopped it and others who have taken a break of a year or so to have a baby and have been ok. I guess this varies from person to person. I have had problems before when my dose has been delayed but that may well just have been because I was poorly anyway.
Em
Normally the injections are given in hospital because there is a risk of anaphlactic reactions after the injection and for several hours after. So I am guessing they don't want this to happen when you are home... The pre-filled syringes sound like a very good idea though...
Sorry to hijack the thread Ratty.... Does anyone know if the injections are latex free...
hiya ive been on the treatment for just over a year. and little things are better than they where before like polishing i can now do without having an astama attack xxx
I was on Xolair for about 9 months I think. Originally it seemed to make a bit of a difference but then it was kind of a group decision that it was no longer effective. I think consultant would have rather I stayed on it just to see was it a bad period but I wasn't willing to take something that was making no difference.
I looked into changing where I got my Xolair, and was told whilst it was def possible it might take a while to arrange and that it would be best to leave a bit of time to sort it at the new place whilst still getting it in the original place if you get my drift?
I got my Xolair in pre filled syringes and enquirer about doing it at home but was told a very definite no! If anyone else is doing it at home, or has been told it's possible in future I would be interested to hear!
Hi Ratty
Just a quick note on my own experience of xolair. I was started on it and had tremendous results almost from the first dose however on my 6th cycle I took an anaphylactic reaction to the drug despite having had it 5 times before. That is why they don't let you self administer. For some reason with this particular drug the risk of reaction is the same on your 6th, 10th, 50th, time as it is on your first. Mind you the preparation of the prefilled syringes may be less risky. I know when I had the xolair the solution was put in a mechanical agitator for 5 minutes prior to administration.
I don't know about funding when you move or if you would have to go through all the criteria testing for your IgE again.
Hope you find a solution.
Hi Ratty
Just a quick note on my own experience of xolair. I was started on it and had tremendous results almost from the first dose however on my 6th cycle I took an anaphylactic reaction to the drug despite having had it 5 times before. That is why they don't let you self administer. For some reason with this particular drug the risk of reaction is the same on your 6th, 10th, 50th, time as it is on your first. Mind you the preparation of the prefilled syringes may be less risky. I know when I had the xolair the solution was put in a mechanical agitator for 5 minutes prior to administration.
I don't know about funding when you move or if you would have to go through all the criteria testing for your IgE again.
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