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Beth: Thanks for your explanation Of NAC. Most of the comments I find on the web are not as easy to understand as yours.

Did you in any of your reading discover what causes scaring in the lungs to progress? Burns

From: Bruce <brucemoreland@ gmail.com>Subject: Re: question regarding meds and O2To: Breathe-Support@ yahoogroups. comDate: Wednesday, December 16, 2009, 1:42 PM

My saturations very greatly at different times. But, a typical situationI could sit at 2 lpm and 96%. If I walked around the house slowly at 2lpm I would drop to around 90%. If I tried to do anything like unloadthe dishwasher or put laundry in then they would drop quickly to around85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%or for heavier activity to 4 lpm.Your saturations will drop when you do activity. How much depends on theperson. But, if I tried to do the activities I mentioned above withoutoxygen, my saturations would quickly drop into the 70's and if Icontinued then lower. Therefore, I don't do it without adequate oxygen.There are some things that I can't get enough oxygen period so justcan't do. If I were to try to lift a very heavy item or push one acrossthe floor, my saturations would drop below 90% even if I was on 6 lpm.> >> >> > From: Jerry Brown jerryb888@ .> > Subject: question regarding meds and O2> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 14, 2009, 2:47 AM> >> >> > Â> >> >> >> >> >> >> >> >> > ,> > Â> > Only if your O2 blood level is well above the 90% mark while at rest> or engaged in lite activity should you consider not using

supplemental> O2, and even then discuss that with your pulmonologist. Besides the> possible harm to your heart due to an increased load as it tries topump> oxygen throughout your body, you would certainly feel more tiredÂand> much sooner in the day, as your recovery time fromexertion> would be greater.> > Â> > That being said, almost 4 years ago, I was able to loose 50 pounds> through exercise and good eating habits, and the benefit was that Iwas> able to get off O2 for the time being. But I never shyed away fromusing> O2 if I needed it for getting in relly good shape. Using the O2 meter> constantly as I exercised, I could work out with confidence. If during> exercise you find your O2 level dropping below 90%, adjust the O2upward> and keep going. Our need for oxygen varies with activity, and thus our> O2

supplementation needs will vary. The more you can stay active, the> better your chances for needing less O2 supplementation. But in themean> time, I strongly suggest staying the course.> > Â> > As for Cellcept, I don't take it, but you may be having some> side-effects which may include anxiety, tiredness, upset stomach, or> headache. These side effects may increase with dosage, but doÂ> consult with your pulmonoligist first before taking the cold turkey> route on meds. Unfortunately treatment for pf is limited, but Â> hopefully one day soon, we'll have better options So hang inthere> and do all you can for yourself, if and until that day comes. Â> > Jerry/Mississippi/ 54/IPF/dx April 05> > Â> > Â> >> >> > Who believes that hard times help us appreciate the good times even>

more.> >>

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.717 / Virus Database: 270.14.113/2573 - Release Date: 12/17/09 23:35:00

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I hope the U of C and being part of a study is a better place for me. Burns

Subject: Re: NACTo: Breathe-Support Date: Saturday, December 19, 2009, 8:09 PM

If you're a number and nuisance to your doctors then time to get newdoctors.> >> > Hey...does anyone taking NAC know what other supliments you takewith> it.......... .?> >>

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LMAO! Sorry . Just find comfort in knowing the liquid form is 100x worse!

34 FL

IPF dx 1/06

>

> I got started on NAC today, why did't any warn me. I opened the bottle and

looked around. I thought the dog had pooped in the rooom...wow.

>

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LOL! It's a wonderful surprise, isn't it.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Wed, December 23, 2009 3:50:30 PMSubject: NAC

I got started on NAC today, why did't any warn me. I opened the bottle and looked around. I thought the dog had pooped in the rooom...wow.

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Maggie,

Mucomyst is still used commonly in certain circumstances. There is nothing like it for breaking up mucous. We've had members who use it daily.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sun, December 27, 2009 12:13:41 PMSubject: NAC

I received my 1st order of NAC from Puritan Pride- OMG - I almost fell over from the rotten egg smell - LOL. Oh well!!

In the 60's NAC (mucomist) was used in nebulizers in the hospital - horrible smell. It's amazing how these older medications keep coming back 40-50 yrs later as being beneficial. My pulmodoc uses it in ICU & he said it protects the kidneys & liver if there are tylenol overdoses.

Maggie 64 IPF-3/07-TX

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it's still used in some nebulizers and for tylenol overdoses

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, December 27, 2009, 12:13 PM

I received my 1st order of NAC from Puritan Pride- OMG - I almost fell over from the rotten egg smell - LOL. Oh well!!

In the 60's NAC (mucomist) was used in nebulizers in the hospital - horrible smell. It's amazing how these older medications keep coming back 40-50 yrs later as being beneficial. My pulmodoc uses it in ICU & he said it protects the kidneys & liver if there are tylenol overdoses.

Maggie 64 IPF-3/07-TX

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  • 3 weeks later...

over the counter nac capsules i take with meals, i drink water with meals, 3 times a day,

ask your doctor about the dosage

some other people on this site complained of stomach problems with NAC

had stomach problems before taking NAC, so didn't notice any difference with it

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, January 17, 2010, 10:02 PM

Hope that you experienced people can help me with some questions since my pulmo didn't seem to know too much about this.

I am trying to take NAC and can for a while but then I have severe stomach pains and diarrhea so I discontinue.

Please advise me if there are any "tricks" to taking this.

Full stomach vs empty?

Water vs juice.?

Pill vs capsule.?

2 a day vs 3?

Bettye Kline 70/MS DX 06/09

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Thanks, Joyce. NJH recommended 3 daily. I appreciate your reply.

Bettye Kline

To: Breathe-Support@...Sent: Mon, January 18, 2010 7:51:50 AMSubject: Re: NAC

over the counter nac capsules i take with meals, i drink water with meals, 3 times a day,

ask your doctor about the dosage

some other people on this site complained of stomach problems with NAC

had stomach problems before taking NAC, so didn't notice any difference with it

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Bettye Kline <bettyekline24@ yahoo.com>Subject: NACTo: Breathe-Support@ yahoogroups. comDate: Sunday, January 17, 2010, 10:02 PM

Hope that you experienced people can help me with some questions since my pulmo didn't seem to know too much about this.

I am trying to take NAC and can for a while but then I have severe stomach pains and diarrhea so I discontinue.

Please advise me if there are any "tricks" to taking this.

Full stomach vs empty?

Water vs juice.?

Pill vs capsule.?

2 a day vs 3?

Bettye Kline 70/MS DX 06/09

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I hadn't had any problems with NAC and my stomach until recently. I started

taking antibiotics for a sinus infection. At that time I also started to get gas

and a metallic taste in my mouth. I think it is the lack of beneficial bacteria

in my digestive tract due to the antibiotics.

I have been taking probiotics to keep the digestive system populated with good

bacteria. I believe that I'll have to take more to counteract the antibiotics

effect on my gut until I'm through with them and can repopulate the good

bacteria again.

Terre, IPF, 6-08, FL

>

>

> >From: Bettye Kline <bettyekline24@ yahoo.com>

> >Subject: NAC

> >To: Breathe-Support@ yahoogroups. com

> >Date: Sunday, January 17, 2010, 10:02 PM

> >

> >

> > 

> >Hope that you experienced people can help me with some questions since my

pulmo didn't seem to know too much about this.

> >I am trying to take NAC and can for a while but then I have severe stomach

pains and diarrhea so I discontinue.

> >Please advise me if there are any " tricks " to taking this.

> >Full stomach vs empty?

> >Water vs juice.?

> >Pill vs capsule.?

> >2 a day vs 3?

> >

> >Bettye Kline 70/MS DX 06/09

> >

>

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I started taking NAC after my doctor suggested taking 1500 mg a day. It is an

antioxidant. It is best to check with you doctor before adding anything to the

mix of vitamins/minerals/medications you may already be taking.

>

> what do u use NAC for

>

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I think that I might try to Jarrow...You are the second to recommend them. It's worth atry.

Bettye Kline

To: Breathe-Support Sent: Mon, January 18, 2010 2:07:35 PMSubject: NAC

I take Jarrow tablets .They dont bother me. I took the Puritan Pride capsules and they made me sick. I have a bad stomach to start.KAREN ipf 2/07

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Bettye, I am the new one who wrote sort of a bio last evening -- from Champaign-Urbana. I too take Jarrow and take three (sometime I forget and take two) and follow the directions on the package -- on empty stomach with fruit juice. And sometime I use tomato juice -- seems to work for me. I find it hard to remember to take something between meals (empty stomach). Hope it works for you.

Alice NSIP 6/05

Subject: Re: NACTo: Breathe-Support Date: Monday, January 18, 2010, 5:46 PM

I think that I might try to Jarrow...You are the second to recommend them. It's worth atry.

Bettye Kline

From: kiki boettin <netwiz3 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, January 18, 2010 2:07:35 PMSubject: NAC

I take Jarrow tablets .They dont bother me. I took the Puritan Pride capsules and they made me sick. I have a bad stomach to start.KAREN ipf 2/07

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Bettye,

I take the liquid NAC mixed with grape juice. My prescription is for 3x/day but I take it 2x/day just because its more convenient for me. I take it in the morning and just before dinner.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Mon, January 18, 2010 5:51:50 AMSubject: Re: NAC

over the counter nac capsules i take with meals, i drink water with meals, 3 times a day,

ask your doctor about the dosage

some other people on this site complained of stomach problems with NAC

had stomach problems before taking NAC, so didn't notice any difference with it

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Bettye Kline <bettyekline24@ yahoo.com>Subject: NACTo: Breathe-Support@ yahoogroups. comDate: Sunday, January 17, 2010, 10:02 PM

Hope that you experienced people can help me with some questions since my pulmo didn't seem to know too much about this.

I am trying to take NAC and can for a while but then I have severe stomach pains and diarrhea so I discontinue.

Please advise me if there are any "tricks" to taking this.

Full stomach vs empty?

Water vs juice.?

Pill vs capsule.?

2 a day vs 3?

Bettye Kline 70/MS DX 06/09

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Never did like liver,Jerry! If I can get those nutrients through asparagus, I'll go there! You always have great info.

Bettye

To: Breathe-Support Sent: Mon, January 18, 2010 6:09:19 PMSubject: Re: NAC

Jarrow makes the time release. You may be able to find Jarrow time release on www.puritanpride. com, but I am sure you can get it at www.iherb.com. I will also mention that NAC is converted after being absorbed into glutathion, which is thought to help keep lung tissue healthy. Glutathion can be found in foods also like liver and asaragus in high amounts. Glutathion can also be taken in capsule form, however is is debated whetrher this form can be readily absorbed as well as NAC through the digestive systgem. Glutathion can be used in a nebulizer, however a recent study showed thatg breathing was restricted following dosing by some 17%, lasting some 2 hours after. When I asked Dr. Lasky, he said don't. Take NAC..

Jerry/Mississippi/ 54/IPF/dx April 05. Who believes that hard times help us appreciate the good times even more.

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Acetylcystein (NAC) is a liquid chemical (and it comes in pill form too) that thins the fluids in the lungs and enchances production of the enzyme glutathione, a powerful antioxidant. It helps boost the immune system. It's used as a mucus dissolving agent to help breakup the thick mucus present in lung disease. It helps improve lung function for those of us with IPF. For some it also helps reduce coughing. I take 600mg of the liquid form daily.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Mon, January 18, 2010 1:47:03 PMSubject: nac

what do u use NAC for

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Hi Jerry! Just want you to know I read some posts and always care what's going on with everyone!

Keep on keepin' on friend!

MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there!

From: Jerry Brown

Sent: Monday, January 18, 2010 4:09 PM

To: Breathe-Support

Subject: Re: NAC

Jarrow makes the time release. You may be able to find Jarrow time release on www.puritanpride.com, but I am sure you can get it at www.iherb.com. I will also mention that NAC is converted after being absorbed into glutathion, which is thought to help keep lung tissue healthy. Glutathion can be found in foods also like liver and asaragus in high amounts. Glutathion can also be taken in capsule form, however is is debated whetrher this form can be readily absorbed as well as NAC through the digestive systgem. Glutathion can be used in a nebulizer, however a recent study showed thatg breathing was restricted following dosing by some 17%, lasting some 2 hours after. When I asked Dr. Lasky, he said don't. Take NAC..

Jerry/Mississippi/54/IPF/dx April 05. Who believes that hard times help us appreciate the good times even more.

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00

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