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

[Guest guest]

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!

---------------------------------

oneSearch: Finally, mobile search that gives answers, not web links.