Re: Instdsign, Ginger, et al

[Guest guest]

Hello,

I understand that many asthma patients can be treated without

turning to " evil candy, " but sadly some of us simply can't. I am on

Xolair (375mg/q2wks)for 27 1/2 months now AND am on 10mg of

Prednisone every other day which is a lot lower now thanks to Xolair.

I have suffered greatly from my Prednisone usage and now am at a

level where my pulmonologist feels that my dose is low enough to not

cause any further side-effects, but high-enough that it still

provides just that extra bit of protection where I'm

generally 'covered' at least until I get to my pred 'stash' if

something catastrophic happens.

I am 20 years old and have been diagnosed with steroid-induced

glaucoma. The up side is that my pulmonologist has been telling me

since he prescribed the high doses of pred to get my eyes checked,

and so I've been very much 'on it' so we caught it and are

controlling it.

For me, and many other patients on Xolair there is simply NO

alternative to 'evil candy' that was until Xolair came out. It does

stink that I have to get 3 shots every 2 weeks, and it is a medicine

that I had to wait a very long time to see results from but it has

allowed my MD to lower my pred. Prednisone causes awful side-effects

(I think I've had just about all of them), and some people don't have

to go on it long-term, for the rest of us though there was

no 'alternative' until Xolair gave us our lives back.

There probably are long-term side effects from Xolair, which is

why my pulmo has me enrolled in the 5yr. study, but I can't get any

long-term side effects if I'm not breathing. I simply stop breathing

if not on Xolair and pred, if it weren't for Xolair I'd be on higher

doses of pred, and have the SE's from that. Everyone even remotely

considering Xolair has to do their own risk/benefit like Addy said,

but for me at least the benefits far outweigh the 'potential' risks.

As you can probably tell I'm VERY pro-Xolair, sorry if this is too

strong.

Meagan

> > >

> > > Where would we find out about long-term SE? Does anyone know

how

> > long the shots have been in use?

> > > I've been on them for 1 yr with some improvement in sx, but I

> would

> > love to have more information on potential SE.

> > > Thanks,

> > > Carol

> > >

> > >

[Guest guest]

Hi ,

I'm happy to hear that I'm not the only one on Xolair and still

on pred too! It sounds as if we both have had (and probably anyone on

long-term pred too) the lovely side effects from it, I'm so grateful

(and so is my family - the mood swings were great) that Xolair has

allowed my dose to become lower.

I was wondering - in one of instdesgn's posts it was mentioned

that pred IS NOT the only alternative to Xolair. Does anyone know of

any alternatives? My pulmo told me that Xolair was the only

alternative to high doses of pred short of being admitted to a

hospital and that was the answer I got from my PCP too, so I believed

them.

Thanks,

Meagan

>

> Meagan,

>

> I am glad I am not the only one where xolair cut the

> pred but not completely. I am on 7.5 mg QD and even if

> my lungs did cooperate, which they are not, my endo

> wont let me go below 5 mg until I go 1) 4 months at 5

> mg and not a drop more and 2) pass my ACTH stim test

> scheduled for December and do significantly better

> than the last one which I flunked hard.

>

> Soo this may never happen as she told me to book the

> stim test once I had hit the 4 month mark. Sad.

>

> BUT this still represents a significant improvement

> (eg greater than 50% on hospitalizations and pred

> dose) so the xolair reps I talked to consider me to be

> a success.

>

> Am I as cured as Doug??? Sadly no. But it is

> definitely better. And it may get even better than

> this so who knows!!

>

>

> (whose body may never look the same from all the pred)

>

>

>

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