Re: 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. "

 

That is ACTUALLY   WRONG!!!!  Because it is still, in " trial stage " which  you

actually said in the following sentance.   That means that the FDA has NOT

approved it for any other use EXCEPT for treating patients age 12 and older, who

suffer from " Allergic Asthma " .   There are a " gazillion " trials going on  at the

moment to prove there are numerous other  uses of Xolair.  BUT until the  FDA

says  yes to those results, your statement is in fact incorrect.

[Guest guest]

I have to agree with you Mark.

I finally saw my pulmo today ... " I don't know " seems to be the

medical response. I don't see much future there. No testing, no

recognition of any other problems that could possibly occur with

Xolair. I felt there was denial of the fact that Xolair had started

to fail or " not work " or however you want to put it - about 3 months

ago. Maybe some other disease " kicked in " which sort of suspended

the effect of Xolair; I have no idea. That's why I go to the message

boards. The pulmo apparently doesn't read her own data since tests

2 months ago showed I was not doing as well.

Interestingly, she said that others had also taken a Xolair holiday.

Perhaps it's to see if Xolair was working or if they could get along

without it; it wasn't clear. Perhaps it was a $ or time issue. I'm

still upset and even a tad frightened, especially since my hubby

commented tonight that I had lost some of my mental sharpness and I

think he's right. He also saw me hobbling around more

(arthritis/fibromyalgia) while on Xolair. Great! Fewer headaches or

immobile & incompetent! (?!?!)

It was from these message boards that I finally realized that Xolair

is still on the research list. It's approved by the FDA and I'm

paying for it (or was) as is(/was) the insurance but it's not a fully

understood treatment; even when it seems like a miraculous

improvement.

Looking forward to learning more about effective treatments

(including Xolair) as are all of us.

--- In , " Mark Headley " <mjheadley@...>

wrote:

>

> 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

>

>

[Guest guest]

>>Interestingly, she said that others had also taken a Xolair holiday.

Perhaps it's to see if Xolair was working or if they could get along

without it; it wasn't clear. Perhaps it was a $ or time issue. I'm

still upset and even a tad frightened, especially since my hubby

commented tonight that I had lost some of my mental sharpness and I

think he's right. He also saw me hobbling around more

(arthritis/fibromyalgia) while on Xolair.<<

This seems to be something I have noticed while on Xolair.

Truthfully, I have in the last few years been susceptible to soft

tissue inflammation, especially after exercise. So, I have relied on

that time on either Advil or Celebrex to recover. But, on Xolair, I am

definitely suffering with more inflammation to the point of injuries.

I just got my first case of elbow tendinitis, despite being very

proactive with stretching, ice and heat before and after every golf

match. I am tempted this Fall to come off of Xolair to see if some of

the soft tissue inflammation will shut down.

[Guest guest]

I noticed that I had soft tissue inflammation before I ever went on xolair.  It

is not any better, but it is no worse either. 

From: billybaroo1958 <cajjz109@...>

Subject: [ ] Re: potential problems with Xolair; potential benefits

from Xolair and this forum

Date: Wednesday, July 23, 2008, 10:40 AM

>>Interestingly, she said that others had also taken a Xolair holiday.

Perhaps it's to see if Xolair was working or if they could get along

without it; it wasn't clear. Perhaps it was a $ or time issue. I'm

still upset and even a tad frightened, especially since my hubby

commented tonight that I had lost some of my mental sharpness and I

think he's right. He also saw me hobbling around more

(arthritis/fibromya lgia) while on Xolair.<<

This seems to be something I have noticed while on Xolair.

Truthfully, I have in the last few years been susceptible to soft

tissue inflammation, especially after exercise. So, I have relied on

that time on either Advil or Celebrex to recover. But, on Xolair, I am

definitely suffering with more inflammation to the point of injuries.

I just got my first case of elbow tendinitis, despite being very

proactive with stretching, ice and heat before and after every golf

match. I am tempted this Fall to come off of Xolair to see if some of

the soft tissue inflammation will shut down.