Re: Has anyone been on Advair?

[Guest guest]

They tried it with me but it caused more problems with my breathing, and I began having asthma attacks////Conniewendy_cidp wrote: Since my HSV1 pneumonia in August I have had ongoing problemsbreathing. The chest tightness was one aspect but I also experiencefrequent breathlessness from any activity, even mild activity.Yesterday my family GP gave me a sample of Advair to try. It's begunto help enormously. Once again it seems a steroid is the only thingthat make symptoms better! Has anyone else been on this

medication? When I looked it up it seemed a dangerous choice, lots of risk and theusual nasty side effects - but I was so tired of lying on the couchbecause I couldn't breath well enough to do anything else. After muchsoul-searching I decided to give it a try in spite of the risks. Hereis the link on Advair:http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a699063.html

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[Guest guest]

I have been on it quite a few years. I was on the 250 dose and now they increased me to 500 when I was having a slight attack from something. I have not noticed any ill effects. You have to ensure that you rinse your mouth after breathing it in. I am not sure if they told you that or not. I know initially no one told me.

KatSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

I have been on it quite a few years. I was on the 250 dose and now they increased me to 500 when I was having a slight attack from something. I have not noticed any ill effects. You have to ensure that you rinse your mouth after breathing it in. I am not sure if they told you that or not. I know initially no one told me.

KatSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

and Kat,

I had been on Advair 250 for several years for Astma, but when I saw my PCP several months ago (after learning the sarc monster had moved to my lungs), she told me that since I was already taking gobs of steroids (Pred) for the sarc that I shouldn't need the Advair any longer. However, after being off the Advair for more than a month, my breathing became very scary and she put me back on it. I have been back on it now for almost 2 weeks and it seems to have mostly helped me to get my breathing back to normal. I haven't noticed any side effects from taking it.

Kat, do you know why we are suppose to rinse our mouths after taking it? I have never heard this?

Thanks and hugs,

in UT

>> Since my HSV1 pneumonia in August I have had ongoing problems> breathing. The chest tightness was one aspect but I also experience> frequent breathlessness from any activity, even mild activity.> Yesterday my family GP gave me a sample of Advair to try. It's begun> to help enormously. Once again it seems a steroid is the only thing> that make symptoms better! Has anyone else been on this medication? > > When I looked it up it seemed a dangerous choice, lots of risk and the> usual nasty side effects - but I was so tired of lying on the couch> because I couldn't breath well enough to do anything else. After much> soul-searching I decided to give it a try in spite of the risks. Here> is the link on Advair:> > > http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a699063.html>

[Guest guest]

and Kat,

I had been on Advair 250 for several years for Astma, but when I saw my PCP several months ago (after learning the sarc monster had moved to my lungs), she told me that since I was already taking gobs of steroids (Pred) for the sarc that I shouldn't need the Advair any longer. However, after being off the Advair for more than a month, my breathing became very scary and she put me back on it. I have been back on it now for almost 2 weeks and it seems to have mostly helped me to get my breathing back to normal. I haven't noticed any side effects from taking it.

Kat, do you know why we are suppose to rinse our mouths after taking it? I have never heard this?

Thanks and hugs,

in UT

>> Since my HSV1 pneumonia in August I have had ongoing problems> breathing. The chest tightness was one aspect but I also experience> frequent breathlessness from any activity, even mild activity.> Yesterday my family GP gave me a sample of Advair to try. It's begun> to help enormously. Once again it seems a steroid is the only thing> that make symptoms better! Has anyone else been on this medication? > > When I looked it up it seemed a dangerous choice, lots of risk and the> usual nasty side effects - but I was so tired of lying on the couch> because I couldn't breath well enough to do anything else. After much> soul-searching I decided to give it a try in spite of the risks. Here> is the link on Advair:> > > http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a699063.html>

[Guest guest]

, my son has asthma and he has to take adviar.. the nurse told him the reason why you have to rinse your mouth out is to prevent thrush.. don't know why that one causes it and the others like albuterol doesn't but that's what she told us..

Re: Has anyone been on Advair?

and Kat,

I had been on Advair 250 for several years for Astma, but when I saw my PCP several months ago (after learning the sarc monster had moved to my lungs), she told me that since I was already taking gobs of steroids (Pred) for the sarc that I shouldn't need the Advair any longer. However, after being off the Advair for more than a month, my breathing became very scary and she put me back on it. I have been back on it now for almost 2 weeks and it seems to have mostly helped me to get my breathing back to normal. I haven't noticed any side effects from taking it.

Kat, do you know why we are suppose to rinse our mouths after taking it? I have never heard this?

Thanks and hugs,

in UT

>> Since my HSV1 pneumonia in August I have had ongoing problems> breathing. The chest tightness was one aspect but I also experience> frequent breathlessness from any activity, even mild activity.> Yesterday my family GP gave me a sample of Advair to try. It's begun> to help enormously. Once again it seems a steroid is the only thing> that make symptoms better! Has anyone else been on this medication? > > When I looked it up it seemed a dangerous choice, lots of risk and the> usual nasty side effects - but I was so tired of lying on the couch> because I couldn't breath well enough to do anything else. After much> soul-searching I decided to give it a try in spite of the risks. Here> is the link on Advair:> > > http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a699063.htl>

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.33/1133 - Release Date: 11/15/2007 8:57 PM

[Guest guest]

, my son has asthma and he has to take adviar.. the nurse told him the reason why you have to rinse your mouth out is to prevent thrush.. don't know why that one causes it and the others like albuterol doesn't but that's what she told us..

Re: Has anyone been on Advair?

and Kat,

I had been on Advair 250 for several years for Astma, but when I saw my PCP several months ago (after learning the sarc monster had moved to my lungs), she told me that since I was already taking gobs of steroids (Pred) for the sarc that I shouldn't need the Advair any longer. However, after being off the Advair for more than a month, my breathing became very scary and she put me back on it. I have been back on it now for almost 2 weeks and it seems to have mostly helped me to get my breathing back to normal. I haven't noticed any side effects from taking it.

Kat, do you know why we are suppose to rinse our mouths after taking it? I have never heard this?

Thanks and hugs,

in UT

>> Since my HSV1 pneumonia in August I have had ongoing problems> breathing. The chest tightness was one aspect but I also experience> frequent breathlessness from any activity, even mild activity.> Yesterday my family GP gave me a sample of Advair to try. It's begun> to help enormously. Once again it seems a steroid is the only thing> that make symptoms better! Has anyone else been on this medication? > > When I looked it up it seemed a dangerous choice, lots of risk and the> usual nasty side effects - but I was so tired of lying on the couch> because I couldn't breath well enough to do anything else. After much> soul-searching I decided to give it a try in spite of the risks. Here> is the link on Advair:> > > http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a699063.htl>

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.33/1133 - Release Date: 11/15/2007 8:57 PM

[Guest guest]

,

It is to prevent yeast infections from starting in your mouth which is called Thrush. If you develop it they normally have to put you on a dose of fluconazole (diflucan) to get rid of the yeast in your body.

KatSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

,

It is to prevent yeast infections from starting in your mouth which is called Thrush. If you develop it they normally have to put you on a dose of fluconazole (diflucan) to get rid of the yeast in your body.

KatSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Hi . I have been taking Advair for a long time too. I have had severe asthma since I was a kid, getting worse since I got older. Anyway, it helps a lot. Yes, the rinsing of the mouth is for thrush. I got it once and had to take Bacoflen? (I think that was the name of it. I think it was a type of fungal med. You take it in your mouth and just let it melt on your tongue. It cleared it right up. Advair does have a few side effects. It is a type of steroid, so I don't care for that either. But it's worth the risk. I am glad it works for you. Debbie Co-Moderatortopdat@... wrote: , my son has asthma and he has to take adviar.. the

nurse told him the reason why you have to rinse your mouth out is to prevent thrush.. don't know why that one causes it and the others like albuterol doesn't but that's what she told us..

Re: Has anyone been on Advair? and Kat, I had been on Advair 250 for several years for Astma, but when I saw my PCP several months ago (after learning the sarc monster had moved to my lungs), she told me that since I was already taking gobs of steroids (Pred) for the sarc that I shouldn't need the Advair any longer. However, after being off the Advair for more than a month, my breathing became very scary and she put me back on it. I have been back on it now for almost 2 weeks and it seems to have mostly helped me to get my breathing back to normal. I haven't noticed any side effects from taking it. Kat, do you know why we are suppose to rinse our mouths after taking it? I have never heard

this? Thanks and hugs, in UT >> Since my HSV1 pneumonia in August I have had ongoing problems> breathing. The chest tightness was one aspect but I also experience> frequent breathlessness from any activity, even mild activity.> Yesterday my family GP gave me a sample of Advair to try. It's begun> to help enormously. Once again it seems a steroid is the only thing> that make symptoms better! Has anyone else been on this medication? > > When I looked it up it seemed a dangerous choice, lots of risk and the> usual nasty side effects - but I was so tired of lying on the couch> because I couldn't breath well enough to do

anything else. After much> soul-searching I decided to give it a try in spite of the risks. Here> is the link on Advair:> > > http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a699063.htl> No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.33/1133 - Release Date: 11/15/2007 8:57 PM Debbie T.Co-Moderator

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[Guest guest]

Hi . I have been taking Advair for a long time too. I have had severe asthma since I was a kid, getting worse since I got older. Anyway, it helps a lot. Yes, the rinsing of the mouth is for thrush. I got it once and had to take Bacoflen? (I think that was the name of it. I think it was a type of fungal med. You take it in your mouth and just let it melt on your tongue. It cleared it right up. Advair does have a few side effects. It is a type of steroid, so I don't care for that either. But it's worth the risk. I am glad it works for you. Debbie Co-Moderatortopdat@... wrote: , my son has asthma and he has to take adviar.. the

nurse told him the reason why you have to rinse your mouth out is to prevent thrush.. don't know why that one causes it and the others like albuterol doesn't but that's what she told us..

Re: Has anyone been on Advair? and Kat, I had been on Advair 250 for several years for Astma, but when I saw my PCP several months ago (after learning the sarc monster had moved to my lungs), she told me that since I was already taking gobs of steroids (Pred) for the sarc that I shouldn't need the Advair any longer. However, after being off the Advair for more than a month, my breathing became very scary and she put me back on it. I have been back on it now for almost 2 weeks and it seems to have mostly helped me to get my breathing back to normal. I haven't noticed any side effects from taking it. Kat, do you know why we are suppose to rinse our mouths after taking it? I have never heard

this? Thanks and hugs, in UT >> Since my HSV1 pneumonia in August I have had ongoing problems> breathing. The chest tightness was one aspect but I also experience> frequent breathlessness from any activity, even mild activity.> Yesterday my family GP gave me a sample of Advair to try. It's begun> to help enormously. Once again it seems a steroid is the only thing> that make symptoms better! Has anyone else been on this medication? > > When I looked it up it seemed a dangerous choice, lots of risk and the> usual nasty side effects - but I was so tired of lying on the couch> because I couldn't breath well enough to do

anything else. After much> soul-searching I decided to give it a try in spite of the risks. Here> is the link on Advair:> > > http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a699063.htl> No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.33/1133 - Release Date: 11/15/2007 8:57 PM Debbie T.Co-Moderator

Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now.

[Guest guest]

Thanks for your replies. Can't believe the difference in my breathing

with Advair. When it wears off, in 12 hours or so the difficulty comes

back. I am only on 20 mg of prednisone every other day. Perhaps if my

dose was higher it might help my breathing, but I would rather have a

more " local " dose of steroids than the pills, which is possible as

long as my other NS problems don't flare. Wish I understood the

mechanism that was making breathing so difficult. They have never

found sarc in my lungs. Like I mentioned, this has just been a problem

since pneumonia.

-

[Guest guest]

Thanks for your replies. Can't believe the difference in my breathing

with Advair. When it wears off, in 12 hours or so the difficulty comes

back. I am only on 20 mg of prednisone every other day. Perhaps if my

dose was higher it might help my breathing, but I would rather have a

more " local " dose of steroids than the pills, which is possible as

long as my other NS problems don't flare. Wish I understood the

mechanism that was making breathing so difficult. They have never

found sarc in my lungs. Like I mentioned, this has just been a problem

since pneumonia.

-

[Guest guest]

do you know why we are suppose to rinse our mouths after taking it? I have never heard this?

,

You rinse your mouth after using any of the oral inhalers to keep away the wonderful thrush that likes to take hold!

Sincerely,

Tracie

NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Wish I understood themechanism that was making breathing so difficult. They have neverfound sarc in my lungs. Like I mentioned, this has just been a problemsince pneumonia.

You may still have some gunk in your lungs, or the inflammation that is in the lungs is still taking up "air space" literally.

My docs like the inhalers (Advair) because it does keep the steroids directly to the lungs. You avoid the systemic effects that way. Make sure to rinse your mouth out so that you don't get a thrush infection going.

Since you are still having problems-- and since this started with the pneumonia-- I'd ask your MD to order another chest xray. If there is any fluid still left down in those lungs-- it's creating your breathing problems. The fact that the Advair is helping and that you have problems after it's worn off- says you do have inflammation at least.

You may want to add the over-the -Mucinex or Mucinex DM. The DM has the expectorant== and it breaks up the mucus so you can cough it up. Ask the MD about it.

What happens is that our lungs should look like a new kitchen sponge. They are fairly rigid-- or should be. With the sarc, we end up with them looking like a worn out sponge-- with all the little tears in the cells and they can't absorb the red blood cells which is what the oxygen binds to.

When the inflammation or mucus coats the tissue, then you've got another "barrier" for the red cells to get through. So you are winded! Very winded.

This is another case where fluids make all the difference-- you have to get the mucus out of the lungs, and that happens by coughing. But if it's thick-- it likes to glean onto the little air sacs-- and the longer it stays there, the higher the chance of it growing into infection.

Hope this helps,

Tracie

NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Thanks for the info. I was under the impression that the type of

pneumonia I had was a " dry " one -- it was caused by Herpes Simplex 1.

I had no mucus to speak of. In fact I rarely coughed. I just couldn't

breath. All they found in my X-ray was some density of the blood

vessels because I couldn't inhale. They had to send me to another

hospital for a special CT scan to find the double pneumonia. I still

rarely cough. Just have difficulty inhaling. Feels like I don't get

enough air. The Advair is helping. Had more energy over the past few

days and was able to go for a walk today although the hills were still

difficult. Tomorrow I see the internist. I really hope I don't get the

old shoulder shrug and the I don't know routine. It really makes me

mad. Seems they would rather throw medication at me and hope it makes

a difference rather than keep trying to find the cause of my symptoms.

I realize we can be very trying for doctors since our symptoms are so

varied but they might want to think about how we feel, having to

suffer and not even know what the root cause is! Maybe it's sarc,

maybe not. I would really like to know. -

>

>

> In a message dated 11/17/2007 8:47:04 A.M. Pacific Standard Time,

> wendy_cidp@... writes:

>

> Wish I understood the

> mechanism that was making breathing so difficult. They have never

> found sarc in my lungs. Like I mentioned, this has just been a problem

> since pneumonia.

>

>

>

> You may still have some gunk in your lungs, or the inflammation

that is in

> the lungs is still taking up " air space " literally.

> My docs like the inhalers (Advair) because it does keep the steroids

> directly to the lungs. You avoid the systemic effects that way.

Make sure to rinse

> your mouth out so that you don't get a thrush infection going.

> Since you are still having problems-- and since this started with the

> pneumonia-- I'd ask your MD to order another chest xray. If there

is any fluid

> still left down in those lungs-- it's creating your breathing

problems. The

> fact that the Advair is helping and that you have problems after

it's worn off-

> says you do have inflammation at least.

> You may want to add the over-the -Mucinex or Mucinex DM. The DM

has the

> expectorant== and it breaks up the mucus so you can cough it up.

Ask the MD

> about it.

>

> What happens is that our lungs should look like a new kitchen

sponge. They

> are fairly rigid-- or should be. With the sarc, we end up with

them looking

> like a worn out sponge-- with all the little tears in the cells and

they

> can't absorb the red blood cells which is what the oxygen binds to.

> When the inflammation or mucus coats the tissue, then you've got

another

> " barrier " for the red cells to get through. So you are winded!

Very winded.

> This is another case where fluids make all the difference-- you

have to get

> the mucus out of the lungs, and that happens by coughing. But if it's

> thick-- it likes to glean onto the little air sacs-- and the longer

it stays there,

> the higher the chance of it growing into infection.

>

> Hope this helps,

> Tracie

> NS Co-owner/moderator

>

>

>

> ************************************** See what's new at

http://www.aol.com

>

[Guest guest]

Thanks for the info. I was under the impression that the type ofpneumonia I had was a "dry" one -- it was caused by Herpes Simplex 1.I had no mucus to speak of. In fact I rarely coughed. I just couldn't

Has your pulmonologist ever done a bronchoscopy? My lungs looked like I had lung cancer, and were about 80% involved initially--- 17 yrs ago. We did knock back some of the problem-- and now I have 40% working lungs.

When they did the bronch-- they found granulomas in all the lungs, upper respiratory tract, the media stinum, and the small bronchules that make up the filters before the air goes into your lungs. This is the area that sarc loves, and it does harden those-- and then we end up with our hearts and lungs working overtime to get enough air in and out to our bodies.

What are your saturation #-- DLCO (Diffuse Lung Capacity Oxygen) and shows how much oxygen is getting out to the extremities. It can be fine sitting still, and you try to get up and do something, and you feel like you've got a Mach truck sitting on your chest. Not to mention that your hands and feet are totally numb.

That is when we end up needing supplemental oxygen to do anything-- and I gotta tell ya-- it helps.

Take care,

Tracie

NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Thanks for the info. I was under the impression that the type ofpneumonia I had was a "dry" one -- it was caused by Herpes Simplex 1.I had no mucus to speak of. In fact I rarely coughed. I just couldn't

Has your pulmonologist ever done a bronchoscopy? My lungs looked like I had lung cancer, and were about 80% involved initially--- 17 yrs ago. We did knock back some of the problem-- and now I have 40% working lungs.

When they did the bronch-- they found granulomas in all the lungs, upper respiratory tract, the media stinum, and the small bronchules that make up the filters before the air goes into your lungs. This is the area that sarc loves, and it does harden those-- and then we end up with our hearts and lungs working overtime to get enough air in and out to our bodies.

What are your saturation #-- DLCO (Diffuse Lung Capacity Oxygen) and shows how much oxygen is getting out to the extremities. It can be fine sitting still, and you try to get up and do something, and you feel like you've got a Mach truck sitting on your chest. Not to mention that your hands and feet are totally numb.

That is when we end up needing supplemental oxygen to do anything-- and I gotta tell ya-- it helps.

Take care,

Tracie

NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

I was diagnosed with sarc in the mid 1970's and then had 3 heart

attacks between 1986 and 1990. So shortness of breath became a way of

life for me, unfortunately. Then I developed some 'rattles' in my

breathing so I have been on Advair for over a year now - started with

250/50 and it has helped a great deal. But - it made me very hoarse

and there were times I seemed to have a lot of mucous down there and

had to clear my throat really hard before I could talk. So, a few

months ago my pulmonologist reduced it to 100/50 and it's still working

very well. Still a little hoarseness but not as bad.

My husband is also on Advair (250/50) because he has COPD and is on

oxygen 24/7. We make quite a pair (smile).

And yes, the rinsing is critical. I use the occasion to brush and

floss twice a day - my dentist is happier with me now!

[Guest guest]

I live in a very rural area in British Columbia and it's a 5 hour trip

to a large enough hospital for such tests. I was supposed to get

airlifted to one when I first got the pneumonia but then I began to

respond to the IV cocktail my doctor had started me on. We decided

that with the superbug problems in all the large hospitals I was at

too great a risk to send away. Long-story-short I never had the

broncoscopy done. My doctor is going to send me to the lung specialist

for tests if things don't settle down. However, she told me on Friday

that Advair only works on asthma, nothing else, so if I am better, it

must be asthma. She thinks the asthma was caused by lung damage from

the double pneumonia. She says it could be permanent. I have noticed

more hoarseness and mucus coming up. I haven't had any mucus until

now. Thought it was a good sign, that it was coming up and getting

out. I've been avoiding going outside since the cold air clamps my

lungs right down, even my quick action inhaler doesn't work well. But

I know walking is good for me. Silly to be afraid of a bit of cold air.

-

[Guest guest]

I live in a very rural area in British Columbia and it's a 5 hour trip

to a large enough hospital for such tests. I was supposed to get

airlifted to one when I first got the pneumonia but then I began to

respond to the IV cocktail my doctor had started me on. We decided

that with the superbug problems in all the large hospitals I was at

too great a risk to send away. Long-story-short I never had the

broncoscopy done. My doctor is going to send me to the lung specialist

for tests if things don't settle down. However, she told me on Friday

that Advair only works on asthma, nothing else, so if I am better, it

must be asthma. She thinks the asthma was caused by lung damage from

the double pneumonia. She says it could be permanent. I have noticed

more hoarseness and mucus coming up. I haven't had any mucus until

now. Thought it was a good sign, that it was coming up and getting

out. I've been avoiding going outside since the cold air clamps my

lungs right down, even my quick action inhaler doesn't work well. But

I know walking is good for me. Silly to be afraid of a bit of cold air.

-

[Guest guest]

she told me on Fridaythat Advair only works on asthma, nothing else, so if I am better, itmust be asthma. She thinks the asthma was caused by lung damage fromthe double pneumonia. She says it could be permanent

You can have asthma and pulmonary sarcoidosis. Advair may be helping the asthma part-- and you can still have the scarring of your lungs from sarcoid granulomas.

Dr. Sharma explained that we have "Idiopathic Pulmonary Fibrosis" which is PF without a known cause. Even tho they know that it's sarcoidosis. What the Advair does is get the steroids to your lungs-- and that brings down the inflammation component. So, yes, they prescribe it for sarc in addition to asthma.

I know that Dr. Baumann-- (not Baughmann--different guy entirely) is at Nebraska Univ Hospital. He is a Critical Care MD and Pulmonology. He was the one that diagnosed my sarc 15 yrs ago. His approach is to use IggE--Gamma Globulin and he is having some success with that approach. This is a treatment that they use with "true" pulmonary fibrosis.

Pulmonary fibrosis is when your lungs become so scarred-- the sponge like sacs have broken down and you've got huge amounts of thick mucus laying in your lungs-- so not much air gets by-- and it was the primary reason that they'd put people on the old "iron lung" machine. I had the opportunity to see one of the original iron lung machines while I was going to USC LA-- for the Remicade clinical trial. What an ordeal that must have been. USC LA was the center that developed the iron lung. We are so lucky medicine has advanced past that machine. ...

I hate to have your MD blow off the problem with your lungs as being asthma. The concept here is to get the progression of the sarc stopped--and if you are treating the symptoms without getting to the cause-- then you are asking for trouble. This is exactly what my primary docs had done to me-- and by the time we realized I was in serious trouble-- I started at Stage 3 pulm sarc. This meant a 2 1/2 yr process of high dose steriods-- and even when I got off them the first time around, I was still at Stage 2. Unfortunately, Dr. Baumann had left for Nebraska-- and I was stuck with GP's to figure out my stuff.

Three years later-- I ended up with fully systemic neurosarcoidosis-- and all that it implies. I had the sarc induced arthritis, iritis, bone and lymph involvement as well as kidney, sinus and liver. The turkey that had replaced Dr B insisted on me going back on pred-- and it did nothing but make me depressed, diabetic and actually increased my arthritis problems-- instead of making my lung issues better. Dr. B had told me if I ever relapsed- do not let them put me on pred-- because he knew that it wouldn't do anything but cover up the symptoms while the disease still progressed. He was right!

Even with all the Superbug thing-- wear a mask, wash your hands, shop from your computer for the holidays, etc. I honestly believe that you are at greater risk with the gunk in your lungs hanging on in there, and it's growing - possibly a fungus or bacteria that can really get into the lungs-- (I can't remember the term- but it's like when you are really susceptable) and it can be nasty.

I don't mean to scare you, or over-react. It's just that this is what happened from my ignorance-- and I so don't want anyone else to have to go down that path.

Sincerely,

Tracie

NS Co-owner/moderatorCheck out AOL Money Finance's list of the hottest products and top money wasters of 2007.

[Guest guest]

she told me on Fridaythat Advair only works on asthma, nothing else, so if I am better, itmust be asthma. She thinks the asthma was caused by lung damage fromthe double pneumonia. She says it could be permanent

You can have asthma and pulmonary sarcoidosis. Advair may be helping the asthma part-- and you can still have the scarring of your lungs from sarcoid granulomas.

Dr. Sharma explained that we have "Idiopathic Pulmonary Fibrosis" which is PF without a known cause. Even tho they know that it's sarcoidosis. What the Advair does is get the steroids to your lungs-- and that brings down the inflammation component. So, yes, they prescribe it for sarc in addition to asthma.

I know that Dr. Baumann-- (not Baughmann--different guy entirely) is at Nebraska Univ Hospital. He is a Critical Care MD and Pulmonology. He was the one that diagnosed my sarc 15 yrs ago. His approach is to use IggE--Gamma Globulin and he is having some success with that approach. This is a treatment that they use with "true" pulmonary fibrosis.

Pulmonary fibrosis is when your lungs become so scarred-- the sponge like sacs have broken down and you've got huge amounts of thick mucus laying in your lungs-- so not much air gets by-- and it was the primary reason that they'd put people on the old "iron lung" machine. I had the opportunity to see one of the original iron lung machines while I was going to USC LA-- for the Remicade clinical trial. What an ordeal that must have been. USC LA was the center that developed the iron lung. We are so lucky medicine has advanced past that machine. ...

I hate to have your MD blow off the problem with your lungs as being asthma. The concept here is to get the progression of the sarc stopped--and if you are treating the symptoms without getting to the cause-- then you are asking for trouble. This is exactly what my primary docs had done to me-- and by the time we realized I was in serious trouble-- I started at Stage 3 pulm sarc. This meant a 2 1/2 yr process of high dose steriods-- and even when I got off them the first time around, I was still at Stage 2. Unfortunately, Dr. Baumann had left for Nebraska-- and I was stuck with GP's to figure out my stuff.

Three years later-- I ended up with fully systemic neurosarcoidosis-- and all that it implies. I had the sarc induced arthritis, iritis, bone and lymph involvement as well as kidney, sinus and liver. The turkey that had replaced Dr B insisted on me going back on pred-- and it did nothing but make me depressed, diabetic and actually increased my arthritis problems-- instead of making my lung issues better. Dr. B had told me if I ever relapsed- do not let them put me on pred-- because he knew that it wouldn't do anything but cover up the symptoms while the disease still progressed. He was right!

Even with all the Superbug thing-- wear a mask, wash your hands, shop from your computer for the holidays, etc. I honestly believe that you are at greater risk with the gunk in your lungs hanging on in there, and it's growing - possibly a fungus or bacteria that can really get into the lungs-- (I can't remember the term- but it's like when you are really susceptable) and it can be nasty.

I don't mean to scare you, or over-react. It's just that this is what happened from my ignorance-- and I so don't want anyone else to have to go down that path.

Sincerely,

Tracie

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[Guest guest]

>

> You can have asthma and pulmonary sarcoidosis. Advair may be

helping the

> asthma part-- and you can still have the scarring of your lungs from

sarcoid

> granulomas.

Yes - my pulmonologist actually referred to it as 'sarcoid induced

asthma' - although I have not heard anyone else use that term. Advair

has almost eliminated the wheezing.

[Guest guest]

>

> You can have asthma and pulmonary sarcoidosis. Advair may be

helping the

> asthma part-- and you can still have the scarring of your lungs from

sarcoid

> granulomas.

Yes - my pulmonologist actually referred to it as 'sarcoid induced

asthma' - although I have not heard anyone else use that term. Advair

has almost eliminated the wheezing.