potential problems with Xolair; potential benefits from Xolair and this forum

[Guest guest]

Xolair isn't necessarily only for people with allergic asthma dependent on

steroids, and it has reportedly induced remission in some patients with other

severe afflictions.

There's at least one study investigating whether Xolair can help patients with

non-allergic asthma.

http://clinicaltrials.gov/ct2/show/NCT00162773

In line with a number of research reports, doctors hoped Xolair would help my

systemic mast cell disorder even though oral corticosteroids have not. I was

thrilled when insurance authorization was secured and I finally had the

opportunity to see whether I'd be amongst those who have benefitted

substantially.

>We have had a run lately of questions regarding Xolair and

possible/potential side effects and/or possible/potential resultant

illnesses.

>Quite frankly, as a moderator, I'm beginning to get frustrated by this,

particularly with the concerns that sound more like complaints than

questions or concerns. I know that I am not the only moderator who

feels this way.

I don't understand what are concerns that sound more like complaints are and why

concerns would be unwelcome in any event. If people share accounts of not just

potential/possible but actual adverse effects from Xolair, I suppose these would

be complaints. Are we to understand this forum disfavors (too many?) postings

from people whose experience with Xolair, at least thus far, has been less than

happy and successful?

Speaking for myself, I've discussed reactions to Xolair, including my own, with

a number of medical professionals including researchers. I'm very interested in

understanding these, my illness, and how/under what circumstances I might be

able to feasibly take Xolair, or some other agent that would provide a

desperately needed breakthrough in my treatment -- including whatever

enlightenment I might gain via this forum.

Since I still haven't entirely rebounded from my setback, I'm also very

interested in any information that could provide guidance on what I might expect

in the way of further recovery.

I agree it's unrealistic and unfair to expect that there will necessarily be

definitive answers here on everything for each of us. Not because doctors are

sitting on information unavailable to us, but because in many cases there are no

definitive answers -- at least without trying Xolair for ourselves. As things

stand, Xolair may uniquely benefit a range of patients a great deal. If we

could expect to find definitive answers from our health care providers, why have

the forum?

Mark