Pulmicort

[Guest guest]

When Macey initially started Pulmicort she took .25 by Neb once a day. Now

she takes .5 by neb. They told us that it would take up to 2 weeks before

any results could even be seen and that it was a maintenance long acting med

and not a rescue drug. It's one of those drugs that has to build up in the

system and replaces some type of receptor in the lungs that maintains an

active airway. Macey takes the Pulmicort for restrictive and obstructive

lung disease. It may be that he does not have the capacity to do inhalers.

Macey never has. She doesn't have the function to pull hard enough to bring

in and hold the inhaler. She does nebs exclusively. Has he ever done

Atrovent nebs? Does he do a peak flow at home?

Ursula Holleman

mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

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[Guest guest]

> When Macey initially started Pulmicort she took .25 by Neb once a

day. Now

> she takes .5 by neb. They told us that it would take up to 2 weeks

before

> any results could even be seen and that it was a maintenance long

acting med

> and not a rescue drug. It's one of those drugs that has to build

up in the

> system and replaces some type of receptor in the lungs that

maintains an

> active airway. Macey takes the Pulmicort for restrictive and

obstructive

> lung disease. It may be that he does not have the capacity to do

inhalers.

> Macey never has. She doesn't have the function to pull hard enough

to bring

> in and hold the inhaler. She does nebs exclusively. Has he ever

done

> Atrovent nebs? Does he do a peak flow at home?

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~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hi Ursula!!

Blake was doing the Pulmicort nebs. .5 with duoneb which is albuterol

with Atrovent. every 4 hrs. while awake. Then it was every 4 hrs. &

one at 3-4 am if needed. He was doing JUST nebulizer. The Dr. feels

that the meds. are not getting in to the lower airways like they

should. But then again we are talking Blakism. he does have what is

called " short jaw Syndrome " his lower jaw is set back so far taht he

can not close his mouth all of the way. Makes for one messy eater!!!

Blake does have soooo much scarring in his lungs taht I am afraid the

inhaler, as you say he may not be able to get the meds in where he

really needs it, is not a good optin for him. he does a lot of

wheezing now more thatn he did with the neb. & the coughing is non

stop. He still does the Duoneb via machine every 4 hrs. around the

clock.

The Pulmicort is a dry power. I have tried it to see if i think

Blake is benefitting from the meds. & I too cpuld not tell if he is

getting it. We will see at teh next PFT Challenge. If no

improvement, he will go back to the nebulizer. I think the Dr. is

trying to " wean " him to inhalers bvecause he is 13 & may want to be

less tethered to a machine. But Blake says he likes the nebulizer

better!!!

Thank You for responding. I appreciate any help I can get!!

(mom to Blake)

[Guest guest]

To those of you getting good results with Pulmicort what strength and form (vials or respules) are you using?

Thanks,

Carl

[Guest guest]

Condry

The respule size is 0.5 mg/2ml. The dosage is 3 drops in each nostril two times

a day. You get 2 treatment per respule. The generic is shaped a little different

so I just use half in the morning and the other half in the evening.

steve

---- condry <ondry@...> wrote:

> To those of you getting good results with Pulmicort what strength and form

(vials or respules) are you using?

>

> Thanks,

> Carl

[Guest guest]

Sorry I'm so behind in this response. I use one pulmicort resuple per 8oz of

saline in a rinse with a neti pot 2x per day. My doctor's discourage me from

trying it straight dripped or with the MAD syringe because I had severe

headaches from nasals steroid sprays in the past and they are concerned that

direct application may have the same effect - and I am having good results with

the pulmicort in the wash - I have a full sense of smell now and no

inflammation.

Jennie

>

> To those of you getting good results with Pulmicort what strength and form

(vials or respules) are you using?

>

> Thanks,

> Carl

>

[Guest guest]

That is great. I am glad that this particular application works for you. I can see that if you (or anyone)has had adverse effects with one type of drug and a similar drug may have the same effect. With me, the Nasacort and nasonix and others weren't helping. I think it was the suspension that was the major factor in those drugs not working for me. For some reason the "straight" pulmicort drops are in the best suspension for me. I hope that you continue to have your SoS.

Steve

Re: Pulmicort

Sorry I'm so behind in this response. I use one pulmicort resuple per 8oz of saline in a rinse with a neti pot 2x per day. My doctor's discourage me from trying it straight dripped or with the MAD syringe because I had severe headaches from nasals steroid sprays in the past and they are concerned that direct application may have the same effect - and I am having good results with the pulmicort in the wash - I have a full sense of smell now and no inflammation.Jennie>> To those of you getting good results with Pulmicort what strength and form (vials or respules) are you using?> > Thanks,> Carl>

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