sooooooooo Nervous!!!

Heys everyone..x

i start my xolair treatment on the wednesday (the 9th) i am extremly nervous that the day is coming ahead!! and because i am getting nervous, asthma symptoms are recurring well think thats why! But my releived is helping it! Just so anxious about it, i dont no why! I just really hope it goes ok, as i am off 2 london for the weekend with my big sister and if it doesnt go well i could land with a hospital admission depending on wheather i take well 2 the xolair or not. i asked for them 2 make it the other week so that am back from london, but they have made it wednesday before i go. But ill just have to see what happens.

Was anyone else really nervous about there first treatment of xolair? or is it just me.

Katie xxxx

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Hi Katie,

Good luck wednesday with your xolair injection xxx

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daughter x

sorry its not worked out for you ,

sending you lots of hugs and kisses and keep your chin up

and have a great weekend with your sister xxxxx

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hey everyone, just ignore that message up top:(:(!

Guess what my consultant has just phoned me and i am not getting that xolair treatment 2moro. My IGE allergys levels are far to high! They have went up even higher than what they were again! he said that they are extremly high and in order for the treatment 2 work your IGE levels have to be in between! and mines isnt! and if i got treatment i could get really ill and take some sort of reaction 2 it and might make my asthma worse.

I am pretty upset and phoned asthma uk to speak 2 them about it as just needed somone 2 talk 2.

Looks like ill just be taken asthma attacks all time.

xxx

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Mother

Thanks Glynes, extremly bad news but trying 2 think positive.

im looking forward to London at weekend, i need a break from doctors and hospitals! Just hope i dont land in london hospital! would be a nitemare!

xxxx

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Hi Katie,

Real sorry to hear this, enjoy your weekend with your sister, and maybe try again later.

Just wondering though, do you know what your IgE level was, the chart lists doses up 700 IU/ml, some require fortnightly treatments depending on your weight and IgE level, and a minimum of 75 IU/ml to get good results.

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hey woody

aww thanks woody, really dissapointed, ben crying since heard news, really thought i was getting a bit of hope! But oh well.

Em am not sure consultant just said that my IGE levels arent even high they are Extremly high! so im not sure.

he also said that it wouldnt work the treatment because my IGE levels are far 2 high!

xxx

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Hi Katie, sorry to hear about your news. For Xolair to be considered effective the IgE level needs to be in the range of approximately 30-700 but there are a few patients with a slightly lower or higher IgE than that range but not significantly low. My consultant also wanted to start me on Xolair and the hospital were very keen to give funding for it but my total IgE level came to 'over 5000' its been discussed and exhausted to be out of the question in my case, I've been retested several times and my IgE has not decreased. My consultant is now contemplating an immunosuppresant drug called Cyclosporin.

I think IgE levels can fluctuate though I may be wrong! So if your previous level showed it was within range for it to be thereapeutic, it could be possible that your latest test was a fluke and maybe ask for a re-test to see if it confirms the latter or not?

I know you're feeling very upset at the moment but there are other things which may help, when you go back to see your consultant ask him to outline what else there might be available which could improve the control you have at the moment.

I hope youre feeling a bit better after your news, take care , simi x

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can you do anything to lower IgE levels?

I'm so sorry you didn't get the treatment.

My consultant has been discussing Xolair as an option for after I've had my baby (currently pregnant) but my IgE levels are always way too high (also over 5000 on most resent test which was an improvement on previous tests)

Does anyone know if it is somehow possible to reduce your IgE levels? It seems that those of us who are in need of something new to try can't use xolair as the dose needed would be dangerous. (From my understanding+what I've been told)