Re: Re:trying to decide whether to stay on xolair or not: need help before

[Guest guest]

thank you for your ideas and information, good luck to

you also.

--- SD Designer <instdesgn1@...> wrote:

> I've been on Xolair for 4 months - the last 3 series

> of injections have been at the highest dose - 375

> mgs every 2 weeks (3 shots at one time). I self

> inject at home with an epi pen near by. The first

> time I self injected I had a small ever so mild (not

> even worth mentioning) lump at one injection site.

> However, since I was learning to inject myself I

> think that part of it was just lack of

> knowledge/skill. One time I forgot that I had

> injected in my arm and later scratched it absent

> mindedly and drew a few drops of blood which of

> course got on my blouse, Again, it was absolutely

> nothing in my opinion - just felt a little silly

> momentarily at forgetting I had injected there.

>

> The most noted side effect of Xolair is the lump

> at the site of injection (something like 45% as I

> recall) but I've never heard of it being considered

> at all serious. In my case, that would not be of

> any concern. Also, some people tend to have delayed

> reactions - I'm one of them although again no

> anaphylaxsis w/Xolair.

>

> As far as immediate reactions (and as I've said

> earlier, I'm allergic to about everything and react

> badly to many meds) I haven't had anaphylactic

> shock. Possibly the first time I felt sort've an

> odd over-all sensation for a couple minutes, then

> possibly again after the dose was increased. BUT NO

> TROUBLE BREATHING AND NO SWELLING IN MY MOUTH OR

> THROAT! I don't know for sure if feeling " odd "

> briefly was not perhaps part of being nervous. I

> did sleep a lot at first too. I tend to be tired

> even now but hadn't really attributed it to Xolair;

> I have various illnesses and of course never know

> which drug is influencing or interacting with me

> and/or the meds I take. I've wondered about

> influence on potential infection (so did my pulmo) &

> body aches. Strangely, an antibiotic helped some

> with the body pains/arthritis (?!?!)

>

> You might talk to your doctor about having 2 or

> even 3 epi pens on hand. Also, ask a friend,

> relative or neighbor to be your treatment buddy and

> keep them informed of what you're taking and when

> and provide them w/pertinent info like doc's name,

> your personal info, phone numbers and even power of

> attorney to make decisions in case you're unable.

> That's a good idea anyway - even without Xolair.

> Explain that you'd like to have someone who can keep

> an eye on you. Probably you won't have any

> anaphylactic shock at this point since you've been

> on it for a while. I'm not expecting it in myself

> although I do follow recommended procedures and

> continue injecting at home.

>

> There ARE other treatments besides prednisone -

> other steroids might have slightly less side effects

> although none of them are really good. Inhaled meds

> help me the most - I rarely take an oral steroid and

> that was the case before Xolair.

>

> As for what happens when you go off Xolair - well,

> that's the $64 question! I'd like to know that too!

> Per sinusitis - I'm the sinusitis kid since

> childhood and so far unfortunately I don't think

> Xolair has helped much there but hope it will kick

> in later. Others do experience improvement.

>

> Good luck!

>

>

>

>

>

>

>

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>

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