Has anyone been given this injection yet last time i sore my cons they mentioned he would put me down to have it I was just wondering if anyone had it and whether its helped them or not or theirs any side affects from it
Im sorry in advance if i shouldnt of put this here but it was easier for me to show what i was on about.
Last Updated: Monday, 7 November 2005, 02:26 GMT
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New drug for hard-to-treat asthma
The drug is given as an injection
People with hard to control asthma could benefit from a drug which has just been licensed in the UK.
Studies show Xolair (omalizumab) cuts asthma attacks among those with severe allergic asthma whose symptoms are not controlled by existing therapies.
The drug, one of a range which can be used for this group, is injected in hospital every two to four weeks.
It works by dampening down the body's immune response, which can rage out of control in this allergic condition.
Although this treatment may only be suitable for a relatively small group of people with asthma, it will increase the treatment options for those whose asthma is difficult to control
A spokeswoman from Asthma UK
About 1,400 people die from severe asthma each year in the UK, and a further 69,000 are hospitalised, in many cases for weeks.
The European Medicines Agency (EMEA) has approved omalizumab for people in this category who have allergic asthma and who are over 12 years of age.
It specifically targets the antibody immunoglobulin E (IgE), which is involved in the allergic process in asthma.
In trials involving 4,300 patients, the medicine has been shown to reduce asthma attacks and hospitalisations, and to help improve lung function and quality of life.
A spokeswoman from Asthma UK welcomed the drug's approval.
She said: ""For 90% of people with asthma, existing treatments should be effective at controlling asthma.
""For the remaining 10%, their asthma is difficult to control and these people often experience the most severe symptoms and the highest use of emergency services.
""Omalizumab may be effective at treating people in this category who have allergic asthma and who are over 12 years of age.""
This could be just under 10,000 of the 5.2 million people with asthma in the UK, experts estimate.
""Although this treatment may only be suitable for a relatively small group of people with asthma, it will increase the treatment options for those whose asthma is difficult to control.""
She said that, as with all new medicines, it would be important to monitor closely for side-effects as the drug comes in to long-term use on a large scale.
Chairman of the British Lung Foundation Dr Mark Britton said: ""It's a major new step in the treatment of allergic asthma.
Tas, I have heard of fantastic results with this injection, I am sure they will be along soon to tell you more as about it . I understand it is exteremly expensive which is why is tough to get.
A couple of things to note before everyone gets their hopes up it works well with allergic asthma, however not all the 10% will have allergic asthma and you also need to have Ige results within a certain window for it to be effective I know mine are way too high and I think someone said the other day theirs were just a little too low although I was reading on the web (so that carries the normal found on the web healtth warning) that once more testing has been done the ""just too low"" bracket will offered it too. This is for some a wonder drug however it is not the asthma cure all some (me) are still searching for.
Best of luck getting funding through your PCT for it and let us know how it goes for you.
Bex
I meet the criteria for this drug along with 4 other severe asthmatic patients that i know of but there is NO FUNDING AVAILABLE in our area to pay for it, on a named patient basis or otherwise. The cons have tried everything through the PCT's or whoever it is they approach with their business case. They are even cutting nurses jobs (4 from the chest ward) at my local hospital as the trust basically bankrupt.
Tas
i was very fortunate that i was given this drug but i was one of the few it didnt work for. I started it in jan and finished it in may. I was the only one in Yorkshire who was on it and my con made such a fuss about how poorly i was the local authority eventually agreed to fund it. As it costs £500 per vial and i had 2(one in each arm) every fortnight so every month it was costing £2000 they said it was too expensive to continue treatment if there was not a significant improvement. My con said it had not worked as it should have done so has stopped the treatment for 3 months to see how i do without it. That doesnt mean i wont have it back but my con is monitoring me over the next few months.
Any more questions - dont hesitate to ask.
Kym
I was one of the guinea pigs in the trial for the Xolair injections, way back before it had even been given its trade name (or infact they'd worked out the drug name - it was something like rhuMab45). I had to go through a lot of screening to get onto the trial, with IgE levels being done alongside various other tests (My IgE was 550, and it's supposed to be around 50), before being allocated either drug or placebo. I got the drug and was very pleased to have been selected for it, thinking that it was going to make everything so much better. Unfortunately I ended up in Critical Care and on life support. Not quite how it's supposed to work out. Needless to say, I didn't continue in the trial and there's no way the docs will prescribe it for me, which is good because I hate ITU.
I am probably going to be in major trouble here, but here goes.
Is all this talk of critical care and not working helpful? There are people who will be having this drug in the near future and if it were me i would be scared stupid now...
This board is not a competition to see who can be the sickest or most unstable. It matters not one jot to me if you have ended up in ITU 6 times in the past 12 months or if you are needing to use your inhaler a little more often. If you have asthma and you are struggling to breathe then this is the place to be. It is about helping and supporting others not scaring the pants off them.
Please people think before you post. it is one thing to say you needing more nebs etc It is another to tell people who are frankly pinning all thier hopes on this drug that you are only person who does not work for or that it nearly killed you.
Bex
hoping that I will have to delete the post cos the posts it refers to will have gone too.
Im sorry if i ofended anyone saying that it didnt work for me but there is NOTHING to suggest it wont work for other people.
I have posted before about this drug and have never said anything bad about it.
i NEVER meant to frighten anyone as i know how terrified i was and very sceptical when i was on it.
SO AGAIIN MY SINCERE APOLOGIES TO EVERYONE.
Kym
I am very sorry if my previous reply to this post has frightened or upset anyone. That was not my intention by any means. Not all drugs work for all people and not all people react in the same way to drugs as is expected. There is no reason to believe that just because I have had a negative experience of Xolair that it shouldn't help others - I'm sure it will and does help some, and it definitely wouldn't have been licensed if it's overall helpfulness hadn't been proved.
Again, apologies if my post scared anyone. I really didn't mean it to.
i notice that both posts by kymii and beckyg have bin deleted. Not sure if by themselves or mods but i think in principal wat kymii and beckyg was sayin was fair enough i.e. that isn't the ansa for everyone and can like any new drug cause serious probs.
Yes it is great that there's new drugs are coming onto market (even if expensive to start with), to help peeps asthma, but i think it is important that peeps are also allowed to be made aware of both sides of the coin...that for some it will work and others it wont.
fingers are crossed for anyone lucky enough to be able to try it.
scampy
I deleted my message myself. Although I don't actually believe there to have been anything wrong in what I posted it clearly upset some so decided to remove it from the board.
Quick message from a moderator
Just a note to say that if a mod deletes a post they will leave their name and also the reason why the post was deleted. If a post disappears altogether (rather than being replaced by a message from the mod in question) then it will have been deleted by the poster.
Regarding the posts on this thread, I'm afraid I didn't read the ones in question, so I can't comment on what they said, but would like to thank the users involved for being considerate enough to remove them.
Thanks for clearing up the confusion over who dletes posts steve. However, have to say i agree with scampy - some people will be pinning hopes on this new so called wonder drug and it is important that those with good and bad experiences of it so far are able to air thier experiences. I do not believe the deleted posts referred to were done in any way to scare people but to allow people to make informed decisions. It is a shame when people feel pressured into removing posts, or as happened recently leaving auk altogether. It is for this reason i do not post much nowadays.
I think AUK can do a lot of good for people but all peoples views are valid.
Baba
Becky i deleted my post too but i have no idea why anyone was offended by what i wrote. For what its worth i didnt think what you wrote either was offensive in any way.
Baba and Scampy - Thanks for the support here - but i dont think i will be in any rush to post again.
Kym
I have 3 PM's from people who read my post regarding the good things about the injection and then read they might end up ITU and it does not work anyway all were concerned. Anyone who knows me knows that I say what I think, I prefer it that way you know where you stand and if i am wrong I am always straight in a with an apology. Most people say they prefer that way too but it does get me into trouble every now and again. If you have the time the listen to Enya's A Moment Lost and you will know why it will be one of funeral songs. It was after getting the 1st PM and without going to the mods I read thread and decided that considering this injection works for the vast majority of people and considering that anyone who has reaction in a drug trial needs to remember that a trial before the thing even got its name means that dosages, concentration etc of the drug were yet to be refined and therefore the odds of the same dose/concentration etc being given especailly after someone almost died are next to nil that this was scaring people so without naming names or passing on the details of contacted me I posted suggesting that maybe the posts were a little negative.
Frankly if you had read one of the PM's from someone who is due to have the her first injection soon you would know why I posted what I did she was terrified, I don't even know if she will have them now. So whilst it is good to air the plus and minus ""i had them and ended up in ITU"" when you don't understand them and ""I had them they don't work"" were not what she wanted to read not everyone here is expert on their condition not everyone understands at the same level. especially as no-one had yet posted saying they had had them and how fab they were. To get only only the bad side is not balence debate.
So I make no apology for posting what I did I had a long PM with BeckyG explaining the situation and she choose to remove her post and we had a lovely chat on MSN last night so I guess there are no hard feelings there. I have had no contact with Kymii.
Bex
I PM'd u yesterday Bex.
I never said owt about itu and i was NOT on the trial.
I was issued it in Jan this year but the results are not immediate so you have to be monitored over a few months.
Good luck to everyone considering it and IF you want my advice - go for it.
Kymiii, so you did I am very sorry. heat etc getting to me will reply when and if this thunder storm breaks.
Bex
Bex, I should have replied to this ages ago, but I just wanted to say that of course there are no hard feelings - life is far too short for that kind of thing. Also, it was great to speak with you the other day :o)
Becky
'Asthma injection'
Hi All
I really didn't wont to cause any striff when i posted about this subject I do hope that people haven't fell out over it I would feel awful if that were to happen with being new here I'd feel that i had to leave but I find all your posts very interesting although I dont think I'm quite as bad as most of you I still find it tough going because I have another breathing problem as well as asthma.
I do hope I havent upset people.
also hope your all not suffering to much today.
'Asthma injection'
Hi All
I really didn't wont to cause any striff when i posted about this subject I do hope that people haven't fell out over it I would feel awful if that were to happen with being new here I'd feel that i had to leave but I find all your posts very interesting although I dont think I'm quite as bad as most of you I still find it tough going because I have another breathing problem as well as asthma.
I do hope I havent upset people.
also hope your all not suffering to much today.
Like Marmite, my son meets the criteria for this drug. He has been told that there is no further medication available for him and he is on the max adult doses of every-thing and very high doses of his bricanyl sub-cut. Having spoken to several bio-chemists, health officials and communication with doctors in America, I will have a fight on my hands to have this drug for my son, but fight I will.
NICE, although the drug is liscenced, have deffered it until 2008, in Scotland you can have it if you can afford it! How can you tell a 12 year old child that?!
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