Xolair Trial

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Sandra (From Essex)

Hi

Is there anyone else like me?

Been on the Xolair trial for 3 ½ years with one small break in the middle when I was again very bad with asthma. During my time on Xolair it transformed me from struggling by from day to day into having a life worth living able to do day to day things within reason. I didn’t realise how bad I was until given this opportunity to feel somewhat normal.

Now at the end of the trial and after a short extension on humanitarian grounds courtesy of the drug company, find myself basically dumped by the system and told there are no funds to carry on. Have told the hospital verbally that I will pay myself until the funding issue is resolved and still met with a negative response. After being assured that everything would be fine etc and not to worry, now I am bad again (Hospitalised constant antibiotics and doctors visits) and it is very hard to have to be like it and having to try to sort out my predicament myself. Have basically been given delaying tactics and the run-around by the system.

Well I am not going to give up I have been on various trials over the years at possible risk to myself hoping that eventually there would be something that would help me and maybe others as well.

I certainly would not have risked the trials if I could have got by reasonably well on my other medications, but only out of sheer desperation to be well, so now I have proved Xolair works big time for me I expect to get it!!

Have now formally written to the PCT the Hospital Consultant seen my MP and lined up the Solicitors to act as and when appropriate.

If there is anyone else out there in the same or similar position Please post a reply lets stop their game of divide and conquer, the system doesn’t like us to know each other!

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hi,im mandy from wrexham,im treated at the countess of chester hosp,and am waiting tohearabout funding of xolair,but noone seems to want to listen.ive been waiting since last xmas.sorry to hear your story and hope someone listens soon luv mandy

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Sandra go to the papers!!! It seems the only way these days to get them to listen if you kick up enough stink they will have to do something about it!! It worked for breast cancer sufferers. IF enough asthmatics did it!! They would all get it!!!

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Hi Sandra

Im so glad its working for you as i didnt have any sucess with it - it just proves that it does work for some people and not others.

I agree with Bowmei - kick up a stink about it coz if you keep bugging them every week then theyll give in just to get you to stop harassing them.

Good luck with it.

Kymiii

[sherryelsmith58 in reply to Hidden]

Hi Sandra and Kymiii,

I have early childhood onset Asthma, and have had bad Asthma all my life. I am now 59 yrs. old.

Xolair did not work for me, sadly! I was on Xolair about 8 months and not only did not get any better, but my Asthma got extremely bad. I think I am allergic to something in the Xolair. I get Chronic infections, mostly Sinusitis and Bronchitis. I think I may have an Auto immune disease and would possibly benefit from Nacalla.

I remember when I was young, about 5-10 yrs, my parents had me on allergy injections, which made me worse instead of better then. Is there anyone else with a similar issue with shots or Xolair? I have spoken to my doctor, and he also thinks I should try Nucalla.

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Hi Sandra,

I am sorry to hear your news - this must be really upsetting and frustrating for you - especially as you reacted so well to the trials.

I saw my consultant yesterday and have been put on a waiting list for Xolair - but was told that this may be a long wait due to funding. My consultant is brilliant and has been trying to battle the local health authority - but is coming up against a brick wall.

I hope you can get the drug again soon Sandra. I felt a bit sorry for myself yesterday when the consultant said there was not much else for me to try - but this drug might be some hope. But when I read your post this morning I felt bad for you as you have experienced the benefits of it - only to have it taken away.

Take care,

Sarah x