NAC

[Guest guest]

Pink/Don

I think it depends somewhat on the form and source. Capsules would tend

to hide the smell. Thats a reason in the US we're far more into capsules

than other countries on pills in general. Pills or tablets would have

more or less smell based on the binders used to structure the pill. The

variation in these binders also might in some cases contribute to some

of the stomach issues.

The puritan pride capsule has Rice Powder, Gelatin, Vegetable Magnesium

Stearate, Silica. The GNC capsule has Gelatin, Cellulose, Dicalcium

Phosphate. Vitamin shoppe has Gelatin, water, magnesium stearate.

Vitabase has Cellulose, water, (May contain one or more of the

following: magnesium stearate, vegetable stearin and silica.)

A difference on other meds between brand and generic is often the brand

is a capsule and the generic is a tablet. Sometimes as insignificant as

that seems it might affect one person slightly different.

So essentially no two are made exactly the same. Generally not a problem

however. An example is that Nexium is a capsule in the US but a tablet

throughout the rest of the world. (Guess its that gold plated purple

capsule that makes the price in the US triple...lol).

Now an ultimate binder story. Vicodin has Hydrocodone and Acetaminophine

(Tylenol) and Percocet has Oxycodone and Acetaminophine. They tylenol

increases the effect of the narcotic in some way. But the primary reason

for the tylenol is to control abuse of the med by recreational drug

users. While they may take it whole they will not be as quick to chop it

which makes it stronger by removing the time release function. Now, if

they still do they actually have a major risk to themselves from the

tylenol. With other meds like xanax and valium the binders are very

risky. I know this and it applied in my case only because I am not

allowed to have acetminophine in any significant quantity due to my

kidneys. So, I would have to request straight hydrocodone or oxycontin

if given a narcotic pain killer. Yes, the tylenol represents more

physical danger to me than the narcotic.

>

>

> From: dsfarrow@... dsfarrow@...

> Subject: NAC

> To: Breathe-Support

> Date: Tuesday, October 6, 2009, 10:18 PM

>

>

>

>

>

>

>

>

> Hi All,

> Thanks for the answers on the smw. Another question: I bought NAC

pills and they smell like rotten eggs! Is this normal? I am afraid to

take them until I talk to some of you. Also, is the VATS procedure like

what I had? (Three little incisions under my arm where they took lung

tissue and a chest tube post-procedure) . Thanks again for all the info

I'm gleaning from this group.

> Don 71, ipf 08/09, central Illinois

>

[Guest guest]

Peggy,

For what it's worth I think it's the NAC itself that does it to you. I can't take it either. It gives me sharp pains in my gut. Though most people can take it, not all of us tolerate it.

Can't wait to see you!!!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Fri, October 9, 2009 11:06:35 AMSubject: Re: NACMB, Yes I can imagine.... I DO... cramping is horrible so I don't take them anymore... I was thinking the citrate causes me to cramp and run so

My brain was stuck.. lol

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

Peggy,

Do you mean magnesium stearate? This is used in the manufacture of lots of pills and capsules to keep the medication from sticking to the manufacturing equipment. It's used in lots of things, including the omeprozole that I take. How odd that you react to that. You are a sensitive flower. LOL

Magnesium citrate is a laxative agent and is definitely not in any NAC that I've ever seen. Can you imagine what a mess that would be? Everytime we take NAC we'd poop? UGH!!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thu, October 8, 2009 8:13:54 PMSubject: Re: NACMike, Do you know the NAC has Magnesium Citrate. That is what bothers our system so much. One 600 mg capsule and I am just a mess.

But it does help with the mucus.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

<1.1732583863>

I use a time release 600 mg NAC tablet. Been told NAC only works for an hour or so whereas the time release NAC tablets last about 3-4 hours. I take it 3 or 4 times daily which mean I have coverage for up to 12-16 hours with the time release relative to the 4-6 hours with regular tablets. Has anyone read anything to the contrary?

Mike

[Guest guest]

MB

Just curious...did you ever try the liquid? I've heard some say it makes

no difference while others have said somewhat less probability of side

effects.

>

> I use a time release 600 mg NAC tablet. Been told NAC only works for

an hour or so whereas the time release NAC tablets last about 3-4 hours.

I take it 3 or 4 times daily which mean I have coverage for up to 12-16

hours with the time release relative to the 4-6 hours with regular

tablets. Has anyone read anything to the contrary?

>

> Mike

>

[Guest guest]

Bruce,

No, not the liquid. I've only tried the Puritan's Pride capsules.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Fri, October 9, 2009 5:41:23 PMSubject: Re: NAC

MBJust curious...did you ever try the liquid? I've heard some say it makesno difference while others have said somewhat less probability of sideeffects.>> I use a time release 600 mg NAC tablet. Been told NAC only works foran hour or so whereas the time release NAC tablets last about 3-4 hours.I take it 3 or 4 times daily which mean I have coverage for up to 12-16hours with the time release relative to the 4-6 hours with regulartablets. Has anyone read anything to the contrary?>> Mike>

[Guest guest]

Thanks, Jack. This is helpful information.

BSK

To: Breathe-Support Sent: Sun, October 18, 2009 2:13:54 PMSubject: Re: NAC

Bettye, I have been taking NAC for a year plus now. I take two 600 mg tablets daily. I was taking one tablet daily without consulting my pulmo dude (Dr. on) who said I could take two a day. My greatest reward has been to lessen the amount of coughing and runny nose sydrome. Dr. on

believes that it has been helpful to the lungs, as well. I must admit that Syrtec, an OTC medicine for

alergies, has completely stopped my runny nose.

As we all know, what helps one person may not benefit another. A little testing is probably the best approach.

Jack79/IPF - UIP/dx06/05 Maine

From: Bettye Kline <bettyekline24@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, October 18, 2009 12:54:44 PMSubject: NAC

To those who have taken NAC

Please share your experiences in taking NAC. What positive effects have your experienced? These are a few questions that I have but any additional information would be of interest to me. My doctor has said that he has little experience with it and does not deem it to be harmful but can’t endorse it as beneficial..

To feel its effects, how long did you take NAC?

Have there been those who feel that it had no positive effects and if so, how long did you take the NAC?

For those who experienced intestinal problems, was it immediate or after taking it for a prolonged period?

Thanks for sharing your thoughts. Hope that everyone has a great weekend.

Bettye Kline

[Guest guest]

Peggy,

I appreciate your reply..I know that each person has a different experience.

BSK

To: Breathe-Support Sent: Sun, October 18, 2009 2:25:06 PMSubject: Re: NAC

My NAC expirance is the tummy trots and the sharpest belly pain ever.. LOL But i=out of the five years I have been diagnosed I have tried it

a dozen times.. hoping my wet nose would stop...

Best of luck with it.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

Bettye, I have been taking NAC for a year plus now. I take two 600 mg tablets daily. I was taking one tablet daily without consulting my pulmo dude (Dr. on) who said I could take two a day. My greatest reward has been to lessen the amount of coughing and runny nose sydrome. Dr. on

believes that it has been helpful to the lungs, as well. I must admit that Syrtec, an OTC medicine for

alergies, has completely stopped my runny nose.

As we all know, what helps one person may not benefit another. A little testing is probably the best approach.

Jack79/IPF - UIP/dx06/05 Maine

From: Bettye Kline <bettyekline24@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, October 18, 2009 12:54:44 PMSubject: NAC

To those who have taken NAC

Please share your experiences in taking NAC. What positive effects have your experienced? These are a few questions that I have but any additional information would be of interest to me. My doctor has said that he has little experience with it and does not deem it to be harmful but can’t endorse it as beneficial..

To feel its effects, how long did you take NAC?

Have there been those who feel that it had no positive effects and if so, how long did you take the NAC?

For those who experienced intestinal problems, was it immediate or after taking it for a prolonged period?

Thanks for sharing your thoughts. Hope that everyone has a great weekend.

Bettye Kline

[Guest guest]

Bettye,

My experience with taking NAC lasted about 8 months. I was taking 600mg three times a day. Initially I started taking it because other people reported that it helped relieve the chronic cough that many of us deal with. It is known to be a mucolytic (meaning it thins mucous in our breathing passages to enable us to cough it up and out) and is also a powerful anti-oxidant. At the time I began taking it in 2006 I was on a high dose of prednisone. The doctor I was seeing at Columbia in NY told me when I asked about NAC that taking it might help protect my body from some of the toxicity of longer term prednisone use.

After a couple of months I began having abdominal pain within a few minutes of taking the NAC. This lasted for an hour or so after each dose.

During the entire time I was taking NAC my lung disease remained stable. I stopped taking NAC in mid-2007 when my GI doctor instructed me to stop taking it. He believed it was irritating my stomach and small intestine. The abdominal pain stopped immediately.

While my lung disease remained stable while I was taking NAC it has also remained stable since I stopped taking it nearly two and a half years ago.

The doctor I'm seeing now at Duke doesn't seem to have strong feelings one way or the other about NAC. We've talked about it and his attitude seems to be 'can't really hurt, might help'. But we've agreed since it did not agree with me in the past, and I remain fairly stable there is no need for me to start taking it again right now.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sun, October 18, 2009 12:54:44 PMSubject: NAC

To those who have taken NAC

Please share your experiences in taking NAC. What positive effects have your experienced? These are a few questions that I have but any additional information would be of interest to me. My doctor has said that he has little experience with it and does not deem it to be harmful but can’t endorse it as beneficial.

To feel its effects, how long did you take NAC?

Have there been those who feel that it had no positive effects and if so, how long did you take the NAC?

For those who experienced intestinal problems, was it immediate or after taking it for a prolonged period?

Thanks for sharing your thoughts. Hope that everyone has a great weekend.

Bettye Kline

[Guest guest]

Bettye -

The doctor at National Jewish said I might try 600 mg NAC three times a day. I

had been stable for 3 years, but mentioned I had been craving antioxidant foods.

I haven't noticed any problems with taking NAC, but then I have only been taking

it since June of this year. I am not bound to it, some days I only take two

doses, other days 4 doses (and I only have 500 mg capsules). I have noticed my

cravings for antioxidants has declined. I have always paid attention to my

cravings because it is usually a sign that my body needs something. Even

chocolate.... I figure there is an antioxidant feature to chocolate that drives

me. I try to stay on the healthier side of antioxidants, the apples,

blueberries, the broccoli, brussel sprouts, and such. I also try to get in 2

servings of fish a week for my diabetes II. I find that if I have tuna fish

sandwiches for lunch twice and occasionally some smoked salmon, my numbers stay

healthier. It does loosen the mucous and over a period of 1-2 months, my

breathing gets just slightly better (takes longer for my sats to drop, though it

is just a marginal improvement). I haven't experienced any intestinal problems,

but I have been an anti-oxidant junkie forever. I was raised in a rural setting

and loved the nuts and berries found in the wild and would raid the garden often

for cucumbers, tomatoes and fresh green peas and beans (oh yeah, and I love the

yellow wax beans too). You can get anti-oxidants from natural foods, but the

NAC gives you a mega dose and after awhile, just as with vitamins, if you don't

need it, your body will expel it, hence the intestinal problems no doubt.

Stefani 61 year old Utahn

ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II 2/2006, Sleep Apnea

4/2009

>

> Bettye,

> My experience with taking NAC lasted about 8 months. I was taking 600mg three

times a day. Initially I started taking it because other people reported that

it helped relieve the chronic cough that many of us deal with. It is known to

be a mucolytic (meaning it thins mucous in our breathing passages to enable us

to cough it up and out) and is also a powerful anti-oxidant. At the time

I began taking it in 2006 I was on a high dose of prednisone. The doctor I was

seeing at Columbia in NY told me when I asked about NAC that taking it might

help protect my body from some of the toxicity of longer term prednisone use. 

> After a couple of months I began having abdominal pain within a few minutes

of taking the NAC. This lasted for an hour or so after each dose.

> During the entire time I was taking NAC my lung disease remained stable. I

stopped taking NAC in mid-2007 when my GI doctor instructed me to stop taking

it. He believed it was irritating my stomach and small intestine. The abdominal

pain stopped immediately.

>

> While my lung disease remained stable while I was taking NAC it has also

remained stable since I stopped taking it nearly two and a half years ago. 

>

> The doctor I'm seeing now at Duke doesn't seem to have strong feelings one

way or the other about NAC. We've talked about it and his attitude seems to be

'can't really hurt, might help'.  But we've agreed since it did not agree with

me in the past, and I remain fairly stable there is no need for me to start

taking it again right now.

>  

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>  

>  

>

>

>

>

> ________________________________

>

> To: Breathe-Support

> Sent: Sun, October 18, 2009 12:54:44 PM

> Subject: NAC

>

>  

> To those who have taken NAC

> Please share your experiences in taking NAC. What positive effects have your

experienced? These are a few questions that I have but any additional

information would be of interest to me. My doctor has said that he has little

experience with it and does not deem it to be harmful but can’t endorse it as

beneficial.

> 1.  To feel its effects, how long did you  take NAC?

> 2.  Have there been those who feel that it had no positive effects and if

so, how long did you take the NAC?

> 3. For those who experienced intestinal problems, was it immediate or after

taking it for a prolonged period?

> Thanks for sharing your thoughts. Hope that everyone has a great weekend.

> Bettye Kline

>

[Guest guest]

Bettye

i started NAC in spring 2006 and still take it -- i started taking it with prednisone and imuran, so i really can't say what it does by itselfthe doctor and the instructions told me to mix the liquid with diet cola to kill the taste, so that's what I did

the important thing is that right now i am stable, so it must be doing something

stomach problems exist anyway, so i can't blame the NAC for that

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: NACTo: Breathe-Support Date: Sunday, October 18, 2009, 12:54 PM

To those who have taken NAC

Please share your experiences in taking NAC. What positive effects have your experienced? These are a few questions that I have but any additional information would be of interest to me. My doctor has said that he has little experience with it and does not deem it to be harmful but can’t endorse it as beneficial.

To feel its effects, how long did you take NAC?

Have there been those who feel that it had no positive effects and if so, how long did you take the NAC?

For those who experienced intestinal problems, was it immediate or after taking it for a prolonged period?

Thanks for sharing your thoughts. Hope that everyone has a great weekend.

Bettye Kline

[Guest guest]

Bettye,

Maybe you saw my previous post, maybe not. I went in for my 3 month check up recently (I was diagnosed in Jan and get a check up every 3 Months). The Dr said "well there was a improvement in your lungs as shown on the CT scan. How much pred do we have you on? I replied "none" He said well this can't be, I've never seen this before....what are you doing different. I said the only thing I am doing is taking NAC. I found out about it from a meeting I had with Leanne and immediately went out and bought it and begin to take two a day, AM and PM.

So,???? I can't say for sure, but I attribute it to the NAC. Incidentally after he read the CT and told the good news He then looked in the file and read the Technicians report which confirmed his appraisal "mild improvement in honey combingin Lungs" He then said " I love it when the Tech agrees with my diagnosis"

Bob Grand Rapids Mi, IPF 1/09, 5 bypasses 9/01

Subject: NACTo: Breathe-Support Date: Sunday, October 18, 2009, 12:54 PM

To those who have taken NAC

Please share your experiences in taking NAC. What positive effects have your experienced? These are a few questions that I have but any additional information would be of interest to me. My doctor has said that he has little experience with it and does not deem it to be harmful but can’t endorse it as beneficial.

To feel its effects, how long did you take NAC?

Have there been those who feel that it had no positive effects and if so, how long did you take the NAC?

For those who experienced intestinal problems, was it immediate or after taking it for a prolonged period?

Thanks for sharing your thoughts. Hope that everyone has a great weekend.

Bettye Kline

[Guest guest]



Bob...good news about the NAC. I took 3, 600 mg, daily just about from dx....began to have severe intestinal problems and had to dis continue but it sure cleared up the cough and mucus I had back then.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

NACTo: Breathe-Support Date: Sunday, October 18, 2009, 12:54 PM

To those who have taken NAC

Please share your experiences in taking NAC. What positive effects have your experienced? These are a few questions that I have but any additional information would be of interest to me. My doctor has said that he has little experience with it and does not deem it to be harmful but can’t endorse it as beneficial.

To feel its effects, how long did you take NAC? Have there been those who feel that it had no positive effects and if so, how long did you take the NAC? For those who experienced intestinal problems, was it immediate or after taking it for a prolonged period?

Thanks for sharing your thoughts. Hope that everyone has a great weekend.

Bettye Kline

[Guest guest]

Mama Sher,

I am only taking 600mg twice daily. I was going to increase to three but maybe it would bring about the symptoms that you ultimately experienced. Plus, I 'd keep forgetting the mid-day pill anyway so.............I love to see you and others on this site post, its wonderful to share all this knowledge. I also like the Idea of a book that others could read and get a "leg up". Meaning, get a concentration of information in a short period of time. I have learned very much but as others have said it comes in bits and pieces, and a lot of time is spent reading about other topics. Not that that is Bad, but it takes months to catch up and sort through all the emails to find the information. It's fun but slow. A book speed up the process.

Bob 69, GR Mi, IPF1/09

Subject: Re: NACTo: Breathe-Support Date: Monday, October 19, 2009, 3:10 PM

 Bob...good news about the NAC. I took 3, 600 mg, daily just about from dx....began to have severe intestinal problems and had to dis continue but it sure cleared up the cough and mucus I had back then.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

NACTo: Breathe-Support@ yahoogroups. comDate: Sunday, October 18, 2009, 12:54 PM

To those who have taken NAC

Please share your experiences in taking NAC. What positive effects have your experienced? These are a few questions that I have but any additional information would be of interest to me. My doctor has said that he has little experience with it and does not deem it to be harmful but can’t endorse it as beneficial.

To feel its effects, how long did you take NAC? Have there been those who feel that it had no positive effects and if so, how long did you take the NAC? For those who experienced intestinal problems, was it immediate or after taking it for a prolonged period?

Thanks for sharing your thoughts. Hope that everyone has a great weekend.

Bettye Kline

[Guest guest]



Bob...how ever many you take, it must be working just fine and if it works don't fix it! lol.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

NACTo: Breathe-Support@ yahoogroups. comDate: Sunday, October 18, 2009, 12:54 PM

To those who have taken NAC

Please share your experiences in taking NAC. What positive effects have your experienced? These are a few questions that I have but any additional information would be of interest to me. My doctor has said that he has little experience with it and does not deem it to be harmful but can’t endorse it as beneficial.

To feel its effects, how long did you take NAC? Have there been those who feel that it had no positive effects and if so, how long did you take the NAC? For those who experienced intestinal problems, was it immediate or after taking it for a prolonged period?

Thanks for sharing your thoughts. Hope that everyone has a great weekend.

Bettye Kline

[Guest guest]

Sher

that sounds like a lot of NAC

since on capsules - otc -- i take 600 mgs three times a day = 1800 mgs a day

wonder if your dosage was too high

c'est la vie!!!

still glad you are being watched more carefully

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: NACTo: Breathe-Support Date: Monday, October 19, 2009, 3:10 PM

 Bob...good news about the NAC. I took 3, 600 mg, daily just about from dx....began to have severe intestinal problems and had to dis continue but it sure cleared up the cough and mucus I had back then.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

NACTo: Breathe-Support@ yahoogroups. comDate: Sunday, October 18, 2009, 12:54 PM

To those who have taken NAC

Please share your experiences in taking NAC. What positive effects have your experienced? These are a few questions that I have but any additional information would be of interest to me. My doctor has said that he has little experience with it and does not deem it to be harmful but can’t endorse it as beneficial.

To feel its effects, how long did you take NAC? Have there been those who feel that it had no positive effects and if so, how long did you take the NAC? For those who experienced intestinal problems, was it immediate or after taking it for a prolonged period?

Thanks for sharing your thoughts. Hope that everyone has a great weekend.

Bettye Kline

[Guest guest]

Thanks, Bob. I hope that you continue to improve. That is certainly hopeful testimony.

BSK

To: Breathe-Support Sent: Mon, October 19, 2009 1:21:44 PMSubject: Re: NAC

Bettye,

Maybe you saw my previous post, maybe not. I went in for my 3 month check up recently (I was diagnosed in Jan and get a check up every 3 Months). The Dr said "well there was a improvement in your lungs as shown on the CT scan. How much pred do we have you on? I replied "none" He said well this can't be, I've never seen this before....what are you doing different. I said the only thing I am doing is taking NAC. I found out about it from a meeting I had with Leanne and immediately went out and bought it and begin to take two a day, AM and PM.

So,???? I can't say for sure, but I attribute it to the NAC. Incidentally after he read the CT and told the good news He then looked in the file and read the Technicians report which confirmed his appraisal "mild improvement in honey combingin Lungs" He then said " I love it when the Tech agrees with my diagnosis"

Bob Grand Rapids Mi, IPF 1/09, 5 bypasses 9/01

From: Bettye Kline <bettyekline24@ yahoo.com>Subject: NACTo: Breathe-Support@ yahoogroups. comDate: Sunday, October 18, 2009, 12:54 PM

To those who have taken NAC

Please share your experiences in taking NAC. What positive effects have your experienced? These are a few questions that I have but any additional information would be of interest to me. My doctor has said that he has little experience with it and does not deem it to be harmful but can’t endorse it as beneficial.

To feel its effects, how long did you take NAC?

Have there been those who feel that it had no positive effects and if so, how long did you take the NAC?

For those who experienced intestinal problems, was it immediate or after taking it for a prolonged period?

Thanks for sharing your thoughts. Hope that everyone has a great weekend.

Bettye Kline

[Guest guest]

Cee...you can purchase NAC at www.puritanpride.com for a very reasonable price. Many of us purchase from there and I used to when I was using it.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

NAC> To: Breathe-Support@ yahoogroups. com> Date: Sunday, October 18, 2009, 12:54 PM> > > > To those who have taken NAC> > Please share your experiences in taking NAC. What positive effects have your experienced? These are a few questions that I have but any additional information would be of interest to me. My doctor has said that he has little experience with it and does not deem it to be harmful but can’t endorse it as beneficial. > > 1.. To feel its effects, how long did you take NAC? > 2.. Have there been those who feel that it had no positive effects and if so, how long did you take the NAC? > 3.. For those who experienced intestinal problems, was it immediate or after taking it for a prolonged period?> Thanks for sharing your thoughts. Hope that everyone has a great weekend.> > Bettye Kline>

[Guest guest]

I am newly DX with PF heard to take NAC 600 mg do I need to take it 3x a day?

Also my pulmonologist asked me to think about open lung biospy Any thoughts on

that Doesn't sound like much fun Osborne Ft. Myes Fl

[Guest guest]

my pulmonary said to take the NAC 3 times a day -- you really need to check with your doctor

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: NACTo: Breathe-Support Date: Sunday, November 15, 2009, 6:08 PM

I am newly DX with PF heard to take NAC 600 mg do I need to take it 3x a day? Also my pulmonologist asked me to think about open lung biospy Any thoughts on that Doesn't sound like much fun Osborne Ft. Myes Fl

[Guest guest]

,

Most sources recommend 600mg of NAC three times a day for people like us. But Joyce is correct. You should discuss this with your doctor. There are clinical trials in progress for NAC at the moment but no results yet. Most experts in interstitial lung disease take the attitude, "Can't hurt, might help" but talk to your own doctor. Some people (I'm one of them experience stomach upset on NAC)

As for the open lung biopsy....you need to ask alot of questions. What do they hope to find out? Is there a less invasive way of getting the information? Things like that. Have you had a high resolution ct scan done? A pulmonary function test? 6 minute walk? Many of our members have had either a VATS biopsy or an open lung biopsy. (I had an OLB) Both are invasive surgery where they remove small pieces of lung tissue to examine it. It is invaluable in pin pointing a specific diagnosis but it's not without risk. Most people do fine but some find the recovery difficult and long. It's not something to be taken lightly. I had it done in June of 2006 and if I had it to do over again, I would but not everyone feels that way.

Welcome to the group by the way. I hope you find the information and support you are looking for here!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sun, November 15, 2009 6:08:43 PMSubject: NAC

I am newly DX with PF heard to take NAC 600 mg do I need to take it 3x a day? Also my pulmonologist asked me to think about open lung biospy Any thoughts on that Doesn't sound like much fun Osborne Ft. Myes Fl

[Guest guest]

,

My doc prescribed Acetylcysteine to be taken 3ml three times a day. If you don't already know, it STINKS!!!! You need to take it with juice or as Pink Joyce does with Diet Coke.

Now you said NAC which is an over the counter type of acetylcysteine. The problem here as my doctor has said is that the NAC capsules are not regulated so we don't know if we are getting the exact amount of 600mg three times a day. I must admit I switch up between the liquid and the capsules, because the liquid has to be kept refrigerated and sometimes I'm not always home when I need to take a dose. Hope this helps.

Adrienne

Subject: NACTo: Breathe-Support Date: Sunday, November 15, 2009, 6:08 PM

I am newly DX with PF heard to take NAC 600 mg do I need to take it 3x a day? Also my pulmonologist asked me to think about open lung biospy Any thoughts on that Doesn't sound like much fun Osborne Ft. Myes Fl

[Guest guest]

Adrienne

i was on the liquid for several years, then the new insurance company doesn't have it in its formulary, so i had to switch to over the counter capsules

my doc recommended 2 kinds

i buy the Vitamin Shoppe brand

I forget the other brand, but ii think it was from GNC

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: NACTo: Breathe-Support Date: Monday, November 16, 2009, 4:34 PM

,

My doc prescribed Acetylcysteine to be taken 3ml three times a day. If you don't already know, it STINKS!!!! You need to take it with juice or as Pink Joyce does with Diet Coke.

Now you said NAC which is an over the counter type of acetylcysteine. The problem here as my doctor has said is that the NAC capsules are not regulated so we don't know if we are getting the exact amount of 600mg three times a day. I must admit I switch up between the liquid and the capsules, because the liquid has to be kept refrigerated and sometimes I'm not always home when I need to take a dose. Hope this helps.

Adrienne

From: karenosborne45 <bcparfait@embarqmai l.com>Subject: NACTo: Breathe-Support@ yahoogroups. comDate: Sunday, November 15, 2009, 6:08 PM

I am newly DX with PF heard to take NAC 600 mg do I need to take it 3x a day? Also my pulmonologist asked me to think about open lung biospy Any thoughts on that Doesn't sound like much fun Osborne Ft. Myes Fl