Re: FDA, Long Acting Bronchodilators

[Guest guest]

The upshot of the FDA panel is that Long Acting Bronchodilators

(LABs) alone are bad, with steroids okay, we can't trust patients to

take both even if their doctors precribe both, so let's make it

impossible to mix and match and allow only inhalers with both

medicies. For some of us, flovent at high levels cause steroid side

effects and damage the throat, making us hoarse all the time. Yet we

need a strong steroid spray, and budesonide (pulmicort, symbicort)

does not cut it. Ciclesonide (Alvesco) fits the bill as it avoids

those problems with its low bioavailability and selective action but

does not come with a bronchodilator. So we need to mix with a

bronchodilator alone. Their decision screws us. No evidence that

Foradil is a problem, this is all based upon serevent and the data is

still suggestive that serevent illnesses result from not following

instructions (using it as an emergency inhaler) or a few who

genetically react to it. Thanks FDA.

I saw that part of the

episode - never heard of anyone using an

> emergency inhaler AROUND them like perfume!!!! Wonder how the

writers

> ever came up with that? It was funny but " House's " self

righteousness

> sometimes reminds me a bit too much of too many docs I really have

> known. And, they seemed to think that every patient has the same

level

> of ignorance!

>

> >

> > Did anyone see the holiday episode of House with the patient who

was

> > misusing her inhaler? Jeff (hubby) saw the commercial and made

sure

> > I saw it b/c he thought it was so funny. I thought it was

extremely

> > funny, but I was sure to tell him that people do really misuse

their

> > inhalers if not instructed properly.

> >

> > Addy

> > Group co-owner

> >

>

>

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[Guest guest]

,

I supervised health services for a Head Start program (for 3 and 4

year olds) for several years. Xoponex and pulmicort are fairly

common meds for very small children with serious asthma. Xopenex has

fewer side effects than alubterol. Is your son taking these as

inhalers or via nebulizer. Regardless, make sure he rinses his mouth

well after taking both meds.

Is your son seeing a specialist? How often does he take Xopenex and

pulmicort? If he is not seeing a specialist, please do ask for a

referral. Studies show that asthmatic children have better health

outcomes when they see a specialist.

We had a lot of luck with our asthmatic Head Start children taking

Singulair. If your son needs Xopenex more than a couple of times a

week and he has not tried Singulair, you may want to ask his doctor

about it.

The website for National Jewish Hospital in Colorado and the website

www.aaaai.org both have a lot of really good info for patients and

parents of patients.

Good luck,

Addy

Group co-owner

I saw that part of

the

>

> episode - never heard of anyone using an

>

> > emergency inhaler AROUND them like perfume!!!! Wonder how the

>

> writers

>

> > ever came up with that? It was funny but " House's " self

>

> righteousness

>

> > sometimes reminds me a bit too much of too many docs I really

have

>

> > known. And, they seemed to think that every patient has the same

>

> level

>

> > of ignorance!

>

> >

>

> > >

>

> > > Did anyone see the holiday episode of House with the patient

who

>

> was

>

> > > misusing her inhaler? Jeff (hubby) saw the commercial and made

>

> sure

>

> > > I saw it b/c he thought it was so funny. I thought it was

>

> extremely

>

> > > funny, but I was sure to tell him that people do really misuse

>

> their

>

> > > inhalers if not instructed properly.

>

> > >

>

> > > Addy

>

> > > Group co-owner

>

> > >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

[Guest guest]

Good meds for a kid.

I saw that part of

the

>

> episode - never heard of anyone using an

>

> > emergency inhaler AROUND them like perfume!!!! Wonder how the

>

> writers

>

> > ever came up with that? It was funny but " House's " self

>

> righteousness

>

> > sometimes reminds me a bit too much of too many docs I really

have

>

> > known. And, they seemed to think that every patient has the same

>

> level

>

> > of ignorance!

>

> >

>

> > >

>

> > > Did anyone see the holiday episode of House with the patient

who

>

> was

>

> > > misusing her inhaler? Jeff (hubby) saw the commercial and made

>

> sure

>

> > > I saw it b/c he thought it was so funny. I thought it was

>

> extremely

>

> > > funny, but I was sure to tell him that people do really misuse

>

> their

>

> > > inhalers if not instructed properly.

>

> > >

>

> > > Addy

>

> > > Group co-owner

>

> > >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

[Guest guest]

>

> The upshot of the FDA panel is that Long Acting Bronchodilators

> (LABs) alone are bad, with steroids okay, we can't trust patients

to

> take both even if their doctors precribe both, so let's make it

> impossible to mix and match and allow only inhalers with both

> medicies. For some of us, flovent at high levels cause steroid

side

> effects and damage the throat, making us hoarse all the time. Yet

we

> need a strong steroid spray, and budesonide (pulmicort, symbicort)

> does not cut it. Ciclesonide (Alvesco) fits the bill as it avoids

> those problems with its low bioavailability and selective action

but

> does not come with a bronchodilator. So we need to mix with a

> bronchodilator alone. Their decision screws us. No evidence that

> Foradil is a problem, this is all based upon serevent and the data

is

> still suggestive that serevent illnesses result from not following

> instructions (using it as an emergency inhaler) or a few who

> genetically react to it. Thanks FDA.

Take in to consideration that Alvesco (Ciclesonide) has ethanol in

it. I know of one person in the UK that is unable to take this

medication due to the alcohol. I, myself, am sensitive to ethanol and

was disappointed to find this out.

[Guest guest]

>

>

> I tried Alvesco out a while back. It made me sick to my stomach. I

wonder if it was due to the ethanol?

>

Is Alvesco new? I don't think I have ever heard of that one before.

[Guest guest]

Er, I wouldn't quite go that far. I read the Alvesco info and then I

read a write up by a doc. Alvesco is new. The primary difference

between Alvesco and traditional inhaled corticosteroids (ICS) is that

Alvesco is lung-activated, that is, it will not activate as a steroid

until it reaches your lungs, so anything that lands in your mouth or

on your throat will NOT be or activate as a steroid. This makes it

much less likely to cause adrenal gland suppression and,

theoretically, makes it much safer, but I wouldn't term any

steroid " safe. " Regardless, most of us have taken enough steroids in

our lives to be well beyond " safe. "

This should make Alvesco a good choice for folks who are REALLY

sensitive to ICS - I know we've had some posters on the board who

experience severe side effects from ICS while some of us are fairly

tolerant of them.

Given the fact that so many of us are at risk due to our steroid use,

it should be worth each of us investigating further and discussing

Alvesco with our doctors.

I'd be interested for someone to explain the ethanol thing. Since

it's not safe for any of us to inhale ethanol, the ethanol must turn

into something different or act differently or something, but I

couldn't find out what.

Addy

Group co-owner

Lifelong asthmatic

>

> >

>

> >

>

> > I tried Alvesco out a while back. It made me sick to my stomach.

I

>

> wonder if it was due to the ethanol?

>

> >

>

>

>

> Is Alvesco new? I don't think I have ever heard of that one before.

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