Re: Nac -To Leanne Storch, Beth and members

[Guest guest]

Lillian,

I can only speak to my own experience and that is I don't notice any reaction or side effect at all to the NAC. I've not heard of anyone having the type of reaction you're speaking of but someone else may have. Is there anything else that you're taking that could be doing this to you?

I've only ever seen NAC (N-ACETYL CYSTEINE is an amnio acid) in capsule form, not tabets and I've not seen it in 300mg. I know that the Puritan site (www.puritan.com) only has it in the 600mg capsule but you might find it elsewhere in smaller doses. And yes, the stuff stinks. Dr. Simonelli warned me about that. He said in the nebulizer form it's quite nasty, sulfury he said. I think Joyce uses Mucomyst and could confirm that.

As for prednisone, it's a steroid. It's produced in small quanities in our bodies and some doctors use it to treat IPF and related diseases in high doses. It's not proven to do any good but they try it anyway. It's an anti-inflammatory and immunosuppressive and the theory is if you reduce the inflammation in our lungs you will reduce the rate of fibrotic scarring. Great theory but it apparently doesn't work that way. Most people have lots of very unpleasant side effects and once you're on it, it takes a long time to wean your body off of it. I've been on it since June and am in the weaning process. They say it will be at least next May or June before I'm off it completely.

I'm sure someone else will chime in with more information. Hope I helped!

Beth (Fibrotic NSIP 06/06)Draw close. Hold hands. Life is short. God is good.

Nac -To Leanne Storch, Beth and members

To Leanne Storch, Beth and members Re: NACHi, my name is Lillian and I am a fairly new member although I apparently have had fibrosis for a number of years. Just recently got worse and I lost a lot of weight-down to a size 4. Also I am a senior.My questions are about Nac. Was told by a former pulmonary doctor and my present doctor to try Nac 600 mg 3 times a day. But when I took it 3 times a day had a very strange reaction. I could not sleep and was up all night for days and also became very hyperactive. When I reduced dosage of the Vitamin to 2 times a day I was still somewhat hyperactive and maybe got 3 hours of sleep a night. Reduced capsule to one a day and slept much better at night but was back to being tired and not as active during the day.My questions: Do you know of any members who had the same reaction to Nac? Are all brands of the Vitamin so bad smelling and bad tasting? Most important a) Is

there somewhere I can get this vitamin in a pill form (so I can cut it in half and take 1 and ½ pills a day) or somewhere I can get a capsule of 300 mg c) are there any other vitamins or supplements which are helpful? What is this prednisome ? - also there seems to be conflicting medical studies and opinions on medications that help. Would also like to know if any members are in clinical trials and how they are doing. I would love to participate in a trial and will investigate that later. Thank you for any help you can give me on this and thank you for setting up this Support Web site

[Guest guest]

Hello Lillian, Welcome to our group. Sorry you had to join us. We are in this together. I agree with Beth and have never heard of the side affects that you are having with NAC. I take 1200 mgs a day and my cough has been a bit more productive, but that's about it. I've heard that it can upset your stomach. From your post, it doesn't sound as if you are on prednisone, but the reaction you are having sounds like you are on it. Prednisone will keep you up and give you lots of energy. What other medication are you taking? Leanne uip 1/03lmcoffice2693 wrote: To Leanne Storch, Beth and members Re: NACHi, my name is Lillian and I am a fairly new member although I apparently have had fibrosis for a number of years. Just recently got worse and I lost a lot of weight-down to a size 4. Also I am a senior.My questions are about Nac. Was told by a former pulmonary doctor and my present doctor to try Nac 600 mg 3 times a day. But when I took it 3 times a day had a very strange reaction. I could not sleep and was up all night for days and also became very hyperactive. When I reduced dosage of the Vitamin to 2 times a day I was still somewhat hyperactive and maybe got 3 hours of sleep a night. Reduced capsule to one a day and slept much better at night but was back to being tired and not

as active during the day.My questions: Do you know of any members who had the same reaction to Nac? Are all brands of the Vitamin so bad smelling and bad tasting? Most important a) Is there somewhere I can get this vitamin in a pill form (so I can cut it in half and take 1 and ½ pills a day) or somewhere I can get a capsule of 300 mg c) are there any other vitamins or supplements which are helpful? What is this prednisome ? - also there seems to be conflicting medical studies and opinions on medications that help. Would also like to know if any members are in clinical trials and how they are doing. I would love to participate in a trial and will investigate that later. Thank you for any help you can give me on this and thank you for setting up this Support Web site

Low, Low, Low Rates! Check out Yahoo! Messenger's cheap PC-to-Phone call rates.

[Guest guest]

Lillian and Beth,

Yes, I use Acetylcysteine in my nebulizer. It goes directly into the lungs and my pulmo says that is better. It stinks so bad. It does loosen up the gunk when I use it.

Hugs, Joyce PF 1997 Bronchiectasis 2004

>> Lillian,> > I can only speak to my own experience and that is I don't notice any reaction or side effect at all to the NAC. I've not heard of anyone having the type of reaction you're speaking of but someone else may have. Is there anything else that you're taking that could be doing this to you? > > I've only ever seen NAC (N-ACETYL CYSTEINE is an amnio acid) in capsule form, not tabets and I've not seen it in 300mg. I know that the Puritan site (www.puritan.com) only has it in the 600mg capsule but you might find it elsewhere in smaller doses. And yes, the stuff stinks. Dr. Simonelli warned me about that. He said in the nebulizer form it's quite nasty, sulfury he said. I think Joyce uses Mucomyst and could confirm that. > > As for prednisone, it's a steroid. It's produced in small quanities in our bodies and some doctors use it to treat IPF and related diseases in high doses. It's not proven to do any good but they try it anyway. It's an anti-inflammatory and immunosuppressive and the theory is if you reduce the inflammation in our lungs you will reduce the rate of fibrotic scarring. Great theory but it apparently doesn't work that way. Most people have lots of very unpleasant side effects and once you're on it, it takes a long time to wean your body off of it. I've been on it since June and am in the weaning process. They say it will be at least next May or June before I'm off it completely. > > I'm sure someone else will chime in with more information. Hope I helped!> > > Beth (Fibrotic NSIP 06/06)> > Draw close. Hold hands. Life is short. God is good.> > > > Nac -To Leanne Storch, Beth and members> > To Leanne Storch, Beth and members Re: NAC> > Hi, my name is Lillian and I am a fairly new member although > I apparently have had fibrosis for a number of years. Just recently > got worse and I lost a lot of weight-down to a size 4. Also I am a > senior.> My questions are about Nac. Was told by a former pulmonary > doctor and my present doctor to try Nac 600 mg 3 times a day. But > when I took it 3 times a day had a very strange reaction. I could > not sleep and was up all night for days and also became very > hyperactive. When I reduced dosage of the Vitamin to 2 times a day I > was still somewhat hyperactive and maybe got 3 hours of sleep a > night. Reduced capsule to one a day and slept much better at night > but was back to being tired and not as active during the day.> My questions: Do you know of any members who had the same > reaction to Nac? Are all brands of the Vitamin so bad smelling and > bad tasting? Most important a) Is there somewhere I can get this > vitamin in a pill form (so I can cut it in half and take 1 and ½ > pills a day) or somewhere I can get a capsule of 300 mg c) are > there any other vitamins or supplements which are helpful? What is > this prednisome ? - also there seems to be conflicting medical > studies and opinions on medications that help. Would also like to > know if any members are in clinical trials and how they are doing. I > would love to participate in a trial and will investigate that > later. Thank you for any help you can give me on this and thank you > for setting up this Support Web site>

[Guest guest]

Lillian,

This is Sher. I'm a senior too. 68. I take NAC and have had NO problems or reactions. Yeah, it smells foul that's for sure. I've never heard it called a "vitamin", only a "supplement".

When I was first diagnosed I had an awful cough and would spit up junk. After the NAC I have no cough/junk.

I buy mine (as others here do) at Puritan.com. Good price.

I was offered a clinical trial but turned it down. It required a lung bio and I ain't a havin' that until it's an absolute MUST! My pulmonologist agreed with my decision.

Sher ipf 5-06

Nac -To Leanne Storch, Beth and members

To Leanne Storch, Beth and members Re: NACHi, my name is Lillian and I am a fairly new member although I apparently have had fibrosis for a number of years. Just recently got worse and I lost a lot of weight-down to a size 4. Also I am a senior.My questions are about Nac. Was told by a former pulmonary doctor and my present doctor to try Nac 600 mg 3 times a day. But when I took it 3 times a day had a very strange reaction. I could not sleep and was up all night for days and also became very hyperactive. When I reduced dosage of the Vitamin to 2 times a day I was still somewhat hyperactive and maybe got 3 hours of sleep a night. Reduced capsule to one a day and slept much better at night but was back to being tired and not as active during the day.My questions: Do you know of any members who had the same reaction to Nac? Are all brands of the Vitamin so bad smelling and bad tasting? Most important a) Is there somewhere I can get this vitamin in a pill form (so I can cut it in half and take 1 and ½ pills a day) or somewhere I can get a capsule of 300 mg c) are there any other vitamins or supplements which are helpful? What is this prednisome ? - also there seems to be conflicting medical studies and opinions on medications that help. Would also like to know if any members are in clinical trials and how they are doing. I would love to participate in a trial and will investigate that later. Thank you for any help you can give me on this and thank you for setting up this Support Web site

[Guest guest]

I agree..........if you do not have to have the biopsy, DON'T! it

was a nightmare when i had mine. collapsed lung and 3 days with a

chest tube.....what fun! then another 6 weeks with staples in my

back where the tube was, not to mention the stitches right at ya

dang bra line!

EG

>

> Lillian,

> This is Sher. I'm a senior too. 68. I take NAC and have had NO

problems or reactions. Yeah, it smells foul that's for sure. I've

never heard it called a " vitamin " , only a " supplement " .

> When I was first diagnosed I had an awful cough and would spit up

junk. After the NAC I have no cough/junk.

> I buy mine (as others here do) at Puritan.com. Good price.

> I was offered a clinical trial but turned it down. It required a

lung bio and I ain't a havin' that until it's an absolute MUST! My

pulmonologist agreed with my decision.

> Sher ipf 5-06

> Nac -To Leanne Storch, Beth and

members

>

>

> To Leanne Storch, Beth and members Re: NAC

>

> Hi, my name is Lillian and I am a fairly new member although

> I apparently have had fibrosis for a number of years. Just

recently

> got worse and I lost a lot of weight-down to a size 4. Also I am

a

> senior.

> My questions are about Nac. Was told by a former pulmonary

> doctor and my present doctor to try Nac 600 mg 3 times a day.

But

> when I took it 3 times a day had a very strange reaction. I

could

> not sleep and was up all night for days and also became very

> hyperactive. When I reduced dosage of the Vitamin to 2 times a

day I

> was still somewhat hyperactive and maybe got 3 hours of sleep a

> night. Reduced capsule to one a day and slept much better at

night

> but was back to being tired and not as active during the day.

> My questions: Do you know of any members who had the same

> reaction to Nac? Are all brands of the Vitamin so bad smelling

and

> bad tasting? Most important a) Is there somewhere I can get this

> vitamin in a pill form (so I can cut it in half and take 1 and

½

> pills a day) or somewhere I can get a capsule of 300 mg c)

are

> there any other vitamins or supplements which are helpful? What

is

> this prednisome ? - also there seems to be conflicting medical

> studies and opinions on medications that help. Would also like

to

> know if any members are in clinical trials and how they are

doing. I

> would love to participate in a trial and will investigate that

> later. Thank you for any help you can give me on this and thank

you

> for setting up this Support Web site

>

[Guest guest]

I've heard many here say the lung bio is a hard thing to go through. I'm not sure I would have it even if Dr. suggested. There are other things that indicate progression of pf and other tests. I'm thinking, as I progress, symptoms will indicate if there is a question as to "what disease" I have. suppose? Sher

Nac -To Leanne Storch, Beth and members> > > To Leanne Storch, Beth and members Re: NAC> > Hi, my name is Lillian and I am a fairly new member although > I apparently have had fibrosis for a number of years. Just recently > got worse and I lost a lot of weight-down to a size 4. Also I am a > senior.> My questions are about Nac. Was told by a former pulmonary > doctor and my present doctor to try Nac 600 mg 3 times a day. But > when I took it 3 times a day had a very strange reaction. I could > not sleep and was up all night for days and also became very > hyperactive. When I reduced dosage of the Vitamin to 2 times a day I > was still somewhat hyperactive and maybe got 3 hours of sleep a > night. Reduced capsule to one a day and slept much better at night > but was back to being tired and not as active during the day.> My questions: Do you know of any members who had the same > reaction to Nac? Are all brands of the Vitamin so bad smelling and > bad tasting? Most important a) Is there somewhere I can get this > vitamin in a pill form (so I can cut it in half and take 1 and ½ > pills a day) or somewhere I can get a capsule of 300 mg c) are > there any other vitamins or supplements which are helpful? What is > this prednisome ? - also there seems to be conflicting medical > studies and opinions on medications that help. Would also like to > know if any members are in clinical trials and how they are doing. I > would love to participate in a trial and will investigate that > later. Thank you for any help you can give me on this and thank you > for setting up this Support Web site>

[Guest guest]

I agree with the people who said they

would not have a lung biopsy. I don’t know how many of us would recover

from such an ordeal.

I received a package yesterday from a friend

who lives in Hawaii.

He is an herbalist and believes herbs are a cure all for everything.

In the package is fresh young eucalyptus

leaves to simmer in water along with anise powder. Inhale deeply morning and

evening.

Fo-Ti a Chinese wood tea to be simmered.

It actually is chunks of wood.

Mullein to make a tea with.

 Yikes anybody try this stuff?

As you can tell I don’t do herbs and

such.

Florida.

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Sher K Bauman

Sent: Saturday, November 04, 2006

8:54 PM

To: Breathe-Support

Subject: Re: Re:

Nac -To Leanne Storch, Beth and members

I've heard many here say the lung bio is

a hard thing to go through. I'm not sure I would have it even if Dr. suggested.

There are other things that indicate progression of pf and other tests. I'm

thinking, as I progress, symptoms will indicate if there is a question as to

" what disease " I have. suppose? Sher

Nac -To Leanne Storch, Beth and

members

>

>

> To Leanne Storch, Beth and members Re: NAC

>

> Hi, my name is Lillian and I am a fairly new member although

> I apparently have had fibrosis for a number of years. Just

recently

> got worse and I lost a lot of weight-down to a size 4. Also I am

a

> senior.

> My questions are about Nac. Was told by a former pulmonary

> doctor and my present doctor to try Nac 600 mg 3 times a day.

But

> when I took it 3 times a day had a very strange reaction. I

could

> not sleep and was up all night for days and also became very

> hyperactive. When I reduced dosage of the Vitamin to 2 times a

day I

> was still somewhat hyperactive and maybe got 3 hours of sleep a

> night. Reduced capsule to one a day and slept much better at

night

> but was back to being tired and not as active during the day.

> My questions: Do you know of any members who had the same

> reaction to Nac? Are all brands of the Vitamin so bad smelling

and

> bad tasting? Most important a) Is there somewhere I can get this

> vitamin in a pill form (so I can cut it in half and take 1 and

½

> pills a day) or somewhere I can get a capsule of 300 mg c)

are

> there any other vitamins or supplements which are helpful? What

is

> this prednisome ? - also there seems to be conflicting medical

> studies and opinions on medications that help. Would also like

to

> know if any members are in clinical trials and how they are

doing. I

> would love to participate in a trial and will investigate that

> later. Thank you for any help you can give me on this and thank

you

> for setting up this Support Web site

>

[Guest guest]

,

An apology to you for spelling your name with an 'e'...then an 'a'....I can't seem to get it straight.

I don't have much experience with herbs/stuff either. My daughter, Lysa researches a lot of supplements and uses them, but not always herbs.

Will you use what he sent?

Sher ipf 5-06

Nac -To Leanne Storch, Beth and members> > > To Leanne Storch, Beth and members Re: NAC> > Hi, my name is Lillian and I am a fairly new member although > I apparently have had fibrosis for a number of years. Just recently > got worse and I lost a lot of weight-down to a size 4. Also I am a > senior.> My questions are about Nac. Was told by a former pulmonary > doctor and my present doctor to try Nac 600 mg 3 times a day. But > when I took it 3 times a day had a very strange reaction. I could > not sleep and was up all night for days and also became very > hyperactive. When I reduced dosage of the Vitamin to 2 times a day I > was still somewhat hyperactive and maybe got 3 hours of sleep a > night. Reduced capsule to one a day and slept much better at night > but was back to being tired and not as active during the day.> My questions: Do you know of any members who had the same > reaction to Nac? Are all brands of the Vitamin so bad smelling and > bad tasting? Most important a) Is there somewhere I can get this > vitamin in a pill form (so I can cut it in half and take 1 and ½ > pills a day) or somewhere I can get a capsule of 300 mg c) are > there any other vitamins or supplements which are helpful? What is > this prednisome ? - also there seems to be conflicting medical > studies and opinions on medications that help. Would also like to > know if any members are in clinical trials and how they are doing. I > would love to participate in a trial and will investigate that > later. Thank you for any help you can give me on this and thank you > for setting up this Support Web site>

[Guest guest]

,

Before I had biopsy, I was diagnosed with everything from bronchitis to tuberculosis. One doctor just told me to go home and pray. The biopsy showed that indeed it was ILD and determined that my fibrosis was caused by connective tissue disease, primarily Lupus. My pulmo reccommended a new rheumy and together they became very aggressive in treating my Lupus. I am looking at 10 years in April 07. I had a real hard time with biopsy...9 days in CCU...but, I probably would have died without a true diagnosis. I do know that there are better scans and other diagnostic tools available now than there were 10 years ago. But, for me, I am glad it was done. Wouldn't look forward to another one, though!

As for herbal meds, I am wary of unregulated products and always am concerned about herbal products that can interact and contradict our prescribed meds. I would ask my doc about anything I was considering taking. My primary doc did tell me to inhale steam with Eucalyptus. Feels wonderful and loosens mucus in the throat and sinuses.

If it is safe and it helps, I am all for it! He also said peppermint was good to inhale. Makes sense, it is good for coughs!

Enjoy the sunshine,

Hugs, Joyce PF 1997 Bronchiectasis 2004

> >> > Lillian,> > This is Sher. I'm a senior too. 68. I take NAC and have had NO > problems or reactions. Yeah, it smells foul that's for sure. I've > never heard it called a "vitamin", only a "supplement".> > When I was first diagnosed I had an awful cough and would spit up > junk. After the NAC I have no cough/junk.> > I buy mine (as others here do) at Puritan.com. Good price.> > I was offered a clinical trial but turned it down. It required a > lung bio and I ain't a havin' that until it's an absolute MUST! My > pulmonologist agreed with my decision.> > Sher ipf 5-06> > Nac -To Leanne Storch, Beth and > members> > > > > > To Leanne Storch, Beth and members Re: NAC> > > > Hi, my name is Lillian and I am a fairly new member although > > I apparently have had fibrosis for a number of years. Just > recently > > got worse and I lost a lot of weight-down to a size 4. Also I am > a > > senior.> > My questions are about Nac. Was told by a former pulmonary > > doctor and my present doctor to try Nac 600 mg 3 times a day. > But > > when I took it 3 times a day had a very strange reaction. I > could > > not sleep and was up all night for days and also became very > > hyperactive. When I reduced dosage of the Vitamin to 2 times a > day I > > was still somewhat hyperactive and maybe got 3 hours of sleep a > > night. Reduced capsule to one a day and slept much better at > night > > but was back to being tired and not as active during the day.> > My questions: Do you know of any members who had the same > > reaction to Nac? Are all brands of the Vitamin so bad smelling > and > > bad tasting? Most important a) Is there somewhere I can get this > > vitamin in a pill form (so I can cut it in half and take 1 and > ½ > > pills a day) or somewhere I can get a capsule of 300 mg c) > are > > there any other vitamins or supplements which are helpful? What > is > > this prednisome ? - also there seems to be conflicting medical > > studies and opinions on medications that help. Would also like > to > > know if any members are in clinical trials and how they are > doing. I > > would love to participate in a trial and will investigate that > > later. Thank you for any help you can give me on this and thank > you > > for setting up this Support Web site> >>

[Guest guest]

Hi Joyce! I was just thinking of you..

Speaking of peppermint, do you remember when, "in the olden days" we gave our babies a squirt of peppermint oil in water for colic?

Wonder why in the world I thought of that!

A quiet day for me...don't feel real good today so I'm doing very little.

I'll curl up with Lola (my doxie) and watch a movie. Works for me.

Your 10 years is encouraging. You have a LOT to deal with!

Have a good day. Sher ipf 5-06 Nac -To Leanne Storch, Beth and > members> > > > > > To Leanne Storch, Beth and members Re: NAC> > > > Hi, my name is Lillian and I am a fairly new member although > > I apparently have had fibrosis for a number of years. Just > recently > > got worse and I lost a lot of weight-down to a size 4. Also I am > a > > senior.> > My questions are about Nac. Was told by a former pulmonary > > doctor and my present doctor to try Nac 600 mg 3 times a day. > But > > when I took it 3 times a day had a very strange reaction. I > could > > not sleep and was up all night for days and also became very > > hyperactive. When I reduced dosage of the Vitamin to 2 times a > day I > > was still somewhat hyperactive and maybe got 3 hours of sleep a > > night. Reduced capsule to one a day and slept much better at > night > > but was back to being tired and not as active during the day.> > My questions: Do you know of any members who had the same > > reaction to Nac? Are all brands of the Vitamin so bad smelling > and > > bad tasting? Most important a) Is there somewhere I can get this > > vitamin in a pill form (so I can cut it in half and take 1 and > ½ > > pills a day) or somewhere I can get a capsule of 300 mg c) > are > > there any other vitamins or supplements which are helpful? What > is > > this prednisome ? - also there seems to be conflicting medical > > studies and opinions on medications that help. Would also like > to > > know if any members are in clinical trials and how they are > doing. I > > would love to participate in a trial and will investigate that > > later. Thank you for any help you can give me on this and thank > you > > for setting up this Support Web site> >>

[Guest guest]

I am too chicken to try it. Cluck! Cluck!

From: Breathe-Support

[mailto:Breathe-Support ] On

Behalf Of Sher K Bauman

Sent: Sunday, November 05, 2006

11:45 AM

To:

Breathe-Support

Subject: Re: Re:

Nac -To Leanne Storch, Beth and members

,

An apology to you for spelling your name

with an 'e'...then an 'a'....I can't seem to get it straight.

I don't have much experience with

herbs/stuff either. My daughter, Lysa researches a lot of supplements and uses

them, but not always herbs.

Will you use what he sent?

Sher ipf 5-06

Nac -To Leanne Storch, Beth and

members

>

>

> To Leanne Storch, Beth and members Re: NAC

>

> Hi, my name is Lillian and I am a fairly new member although

> I apparently have had fibrosis for a number of years. Just

recently

> got worse and I lost a lot of weight-down to a size 4. Also I am

a

> senior.

> My questions are about Nac. Was told by a former pulmonary

> doctor and my present doctor to try Nac 600 mg 3 times a day.

But

> when I took it 3 times a day had a very strange reaction. I

could

> not sleep and was up all night for days and also became very

> hyperactive. When I reduced dosage of the Vitamin to 2 times a

day I

> was still somewhat hyperactive and maybe got 3 hours of sleep a

> night. Reduced capsule to one a day and slept much better at

night

> but was back to being tired and not as active during the day.

> My questions: Do you know of any members who had the same

> reaction to Nac? Are all brands of the Vitamin so bad smelling

and

> bad tasting? Most important a) Is there somewhere I can get this

> vitamin in a pill form (so I can cut it in half and take 1 and

½

> pills a day) or somewhere I can get a capsule of 300 mg c)

are

> there any other vitamins or supplements which are helpful? What

is

> this prednisome ? - also there seems to be conflicting medical

> studies and opinions on medications that help. Would also like

to

> know if any members are in clinical trials and how they are

doing. I

> would love to participate in a trial and will investigate that

> later. Thank you for any help you can give me on this and thank

you

> for setting up this Support Web site

>

[Guest guest]

Sher:

When you mentioned Peppermint oil for colic it brought back a memory. I had just turned 19 and had my first baby, a boy, and the nurse recommended baby oil for his circumcision and alcohol for his umbilical cord site and my mother recommended peppermint oil for his colic. Well, one day, after no sleep from a colicky baby, I got the bottles confused and put baby oil on his umbilical cord and alcohol on his circumcision. He gasped! Drew in a deep breath, and held it for the longest time, turning blue. I thought I had killed him but then he screamed. I was so upset and cried all day long. The next day he was still colicky so I gave him the peppermint oil but no one told me I was supposed to dilute it in lots of water. I just put a few drops in his mouth right from the bottle. Again, he drew in his breath and gasped. After those episodes, I was ready to give him up for adoption to save his life. LOL It took me years to forgive myself for my mistakes. Oh, first time mothers, I have such empathy for them. Thanks for the memory. By the way, my son is in his late thirties now and has two kids of his own. So he did survive me. I knew you were all wondering.

Carolyn

-- Re: Re: Nac -To Leanne Storch, Beth and members

Hi Joyce! I was just thinking of you..

Speaking of peppermint, do you remember when, "in the olden days" we gave our babies a squirt of peppermint oil in water for colic?

Wonder why in the world I thought of that!

A quiet day for me...don't feel real good today so I'm doing very little.

I'll curl up with Lola (my doxie) and watch a movie. Works for me.

Your 10 years is encouraging. You have a LOT to deal with!

Have a good day. Sher ipf 5-06 Nac -To Leanne Storch, Beth and > members> > > > > > To Leanne Storch, Beth and members Re: NAC> > > > Hi, my name is Lillian and I am a fairly new member although > > I apparently have had fibrosis for a number of years. Just > recently > > got worse and I lost a lot of weight-down to a size 4. Also I am > a > > senior.> > My questions are about Nac. Was told by a former pulmonary > > doctor and my present doctor to try Nac 600 mg 3 times a day. > But > > when I took it 3 times a day had a very strange reaction. I > could > > not sleep and was up all night for days and also became very > > hyperactive. When I reduced dosage of the Vitamin to 2 times a > day I > > was still somewhat hyperactive and maybe got 3 hours of sleep a > > night. Reduced capsule to one a day and slept much better at > night > > but was back to being tired and not as active during the day.> > My questions: Do you know of any members who had the same > > reaction to Nac? Are all brands of the Vitamin so bad smelling > and > > bad tasting? Most important a) Is there somewhere I can get this > > vitamin in a pill form (so I can cut it in half and take 1 and > ½ > > pills a day) or somewhere I can get a capsule of 300 mg c) > are > > there any other vitamins or supplements which are helpful? What > is > > this prednisome ? - also there seems to be conflicting medical > > studies and opinions on medications that help. Would also like > to > > know if any members are in clinical trials and how they are > doing. I > > would love to participate in a trial and will investigate that > > later. Thank you for any help you can give me on this and thank > you > > for setting up this Support Web site> >>

[Guest guest]

Carolyn,

Our kiddos are stronger than we think!

I was baking a cake one day, daughter standing on a stool, "helping", stool tipped, and her hair caught in the beaters! She screamed at the top of her voice, I couldn't get the beaters out, we had to cut her hair, there was chocolate cake batter everywhere...she says, "It's ok mommy, it'll grow back!" Bless her heart. Sher

Nac -To Leanne Storch, Beth and > members> > > > > > To Leanne Storch, Beth and members Re: NAC> > > > Hi, my name is Lillian and I am a fairly new member although > > I apparently have had fibrosis for a number of years. Just > recently > > got worse and I lost a lot of weight-down to a size 4. Also I am > a > > senior.> > My questions are about Nac. Was told by a former pulmonary > > doctor and my present doctor to try Nac 600 mg 3 times a day. > But > > when I took it 3 times a day had a very strange reaction. I > could > > not sleep and was up all night for days and also became very > > hyperactive. When I reduced dosage of the Vitamin to 2 times a > day I > > was still somewhat hyperactive and maybe got 3 hours of sleep a > > night. Reduced capsule to one a day and slept much better at > night > > but was back to being tired and not as active during the day.> > My questions: Do you know of any members who had the same > > reaction to Nac? Are all brands of the Vitamin so bad smelling > and > > bad tasting? Most important a) Is there somewhere I can get this > > vitamin in a pill form (so I can cut it in half and take 1 and > ½ > > pills a day) or somewhere I can get a capsule of 300 mg c) > are > > there any other vitamins or supplements which are helpful? What > is > > this prednisome ? - also there seems to be conflicting medical > > studies and opinions on medications that help. Would also like > to > > know if any members are in clinical trials and how they are > doing. I > > would love to participate in a trial and will investigate that > > later. Thank you for any help you can give me on this and thank > you > > for setting up this Support Web site> >>

[Guest guest]

All,

During the easter egg hunt that ended with my IPF diagnosis, I had a

lung biopsy. The main problem was that I felt like a mule had kicked me

in the chest for several days. The option was to leave the possibility

of lung cancer hanging there. I was fortunate (?) and did not have

cancer. The Biopsy was performed at the University of Virginia Medical

Center by some of the top line surgeons. ( The Dr would not tell me

where he kept his mule).

Bottom line, there is risk in all we do with IPF and related symptoms.

Over the counter NAC, I think, is among those risks. The pharmaceutical

grade by script is much safer, again in my opinion. The side affects of

Predisone is another.... Anyway we should keep in mind the trade offs

between procedures and what it will do or not do for us vs the risk(s).

Further, as many of you have said, this whole IPF deal seems to be a

guess so we just keep searching.

Regards

[Guest guest]

Hi Sher, Prilosec was a rx before it got to the otc shelves.I would call pharmacy and just ask what rx for 30 pills would cost. HP 6/06Sher K Bauman wrote: . This is the first I've known about pharmacy grade NAC! I will call tomorrow and request a script. I just saw my Dr. on Friday and commented about the supplements that can't be counted toward

"medical" expenses and he DIDN'T SAY A WORD. Fortunately, NAC is not expensive but it's the principal when insurance will help pay. Maybe another such 'otc' would cost plenty. Dr. also prescribes Prilosec and that is expensive at one a day. If there is a pharmacy grade maybe ins. will help. Although come to think the co-pay is so damn high for certain drugs that otc is about the same I suppose. Can't get ahead......... Thanks. Sher ipf 5-06 Re: Nac -To Leanne Storch, Beth and members All,During the easter egg hunt that ended with my IPF diagnosis, I had a lung biopsy. The main problem was that I felt like a mule had kicked me in the chest for several days. The option was to leave the possibility of lung cancer hanging there. I was fortunate (?) and did not have cancer. The Biopsy was performed at the University of Virginia Medical Center by some of the top line surgeons. ( The Dr would not tell me where he kept his mule).Bottom line, there is risk in all we do with IPF and related symptoms. Over the counter NAC, I think, is among

those risks. The pharmaceutical grade by script is much safer, again in my opinion. The side affects of Predisone is another.... Anyway we should keep in mind the trade offs between procedures and what it will do or not do for us vs the risk(s). Further, as many of you have said, this whole IPF deal seems to be a guess so we just keep searching.Regards

Sponsored Link

Get an Online or Campus degree - Associate's, Bachelor's, or Master's - in less than one year.

[Guest guest]

I take a generic form of prilosec by prescription. Because of my insurance it is quite a bit cheaper than buying it over the counter. I didn't thinkthat I had acid reflux disease but since I have been taking it (July) I have less discomfort in my chest. Some of the strange feelings in my chest that I thought were from the disease either weren't or aren't active right now. A pulmonologist whom I saw thought that all fibrosis patients should be treated for acid reflux disease. Jaimie 7-10 years gives a lot of time for a cure for this disease or for improvement in the lung transplant operation. They make so much progress these days. Have a lot of hope. They said I was too old or would be by the time I needed a transplant. Since I can't it's kind of nice not to have to weigh the options. glocaskey IPF 3-06jaime wrote: . __________________________________________________

[Guest guest]

Sher,

I use the generic Prilosec (Omeprazole)...I take 4 a day...total 80mg.

Joyce PF 1997 Bronchiectasis 2004>> .> This is the first I've known about pharmacy grade NAC! I will call tomorrow and request a script. I just saw my Dr. on Friday and commented about the supplements that can't be counted toward "medical" expenses and he DIDN'T SAY A WORD. Fortunately, NAC is not expensive but it's the principal when insurance will help pay. Maybe another such 'otc' would cost plenty. > Dr. also prescribes Prilosec and that is expensive at one a day. If there is a pharmacy grade maybe ins. will help. Although come to think the co-pay is so damn high for certain drugs that otc is about the same I suppose.> Can't get ahead.........> Thanks. Sher ipf 5-06> Re: Nac -To Leanne Storch, Beth and members> > > All,> > During the easter egg hunt that ended with my IPF diagnosis, I had a > lung biopsy. The main problem was that I felt like a mule had kicked me > in the chest for several days. The option was to leave the possibility > of lung cancer hanging there. I was fortunate (?) and did not have > cancer. The Biopsy was performed at the University of Virginia Medical > Center by some of the top line surgeons. ( The Dr would not tell me > where he kept his mule).> > Bottom line, there is risk in all we do with IPF and related symptoms. > Over the counter NAC, I think, is among those risks. The pharmaceutical > grade by script is much safer, again in my opinion. The side affects of > Predisone is another.... Anyway we should keep in mind the trade offs > between procedures and what it will do or not do for us vs the risk(s). > Further, as many of you have said, this whole IPF deal seems to be a > guess so we just keep searching.> > Regards> > >

[Guest guest]

I love it when the 'drug lords' put prescription meds over the counter and then try to act like it is a cost reduction for patients. It is definatly not for those with insurance. Musinex (gualifessan) cost $15 copay and otc now costs me $60 a month. My doctor tries to help me get prescriptions instead of having to pay the otc cost. On Prilosec I can get prescription because I am on higher dosage. Then I get Omeprazole (generic) for half the copay. I have to take 4 instead of 2 pills at a time, but no problem.

I ask my pharmicist for tips about how to save costs. They were the ones who told me how to get Omeprazole.

Hugs, Joyce PF 1997 Bronchiectasis 2004 > .> This is the first I've known about pharmacy grade NAC! I will call tomorrow and request a script. I just saw my Dr. on Friday and commented about the supplements that can't be counted toward "medical" expenses and he DIDN'T SAY A WORD. Fortunately, NAC is not expensive but it's the principal when insurance will help pay. Maybe another such 'otc' would cost plenty. > Dr. also prescribes Prilosec and that is expensive at one a day. If there is a pharmacy grade maybe ins. will help. Although come to think the co-pay is so damn high for certain drugs that otc is about the same I suppose.> Can't get ahead.........> Thanks. Sher ipf 5-06> Re: Nac -To Leanne Storch, Beth and members> > > All,> > During the easter egg hunt that ended with my IPF diagnosis, I had a > lung biopsy. The main problem was that I felt like a mule had kicked me > in the chest for several days. The option was to leave the possibility > of lung cancer hanging there. I was fortunate (?) and did not have > cancer. The Biopsy was performed at the University of Virginia Medical > Center by some of the top line surgeons. ( The Dr would not tell me > where he kept his mule).> > Bottom line, there is risk in all we do with IPF and related symptoms. > Over the counter NAC, I think, is among those risks. The pharmaceutical > grade by script is much safer, again in my opinion. The side affects of > Predisone is another.... Anyway we should keep in mind the trade offs > between procedures and what it will do or not do for us vs the risk(s). > Further, as many of you have said, this whole IPF deal seems to be a > guess so we just keep searching.> > Regards> > > > > > > > > > > ---------------------------------> Sponsored Link> > Get an Online or Campus degree - Associate's, Bachelor's, or Master's - in less than one year.>

[Guest guest]

Okay, I've gotta ask. What is NAC? Joy 3/6

Joy

(IPF 3/06)

Today is a gift for each

of us. Enjoy it.

Nac -To Leanne Storch, Beth and members> > > To Leanne Storch, Beth and members Re: NAC> > Hi, my name is Lillian and I am a fairly new member although > I apparently have had fibrosis for a number of years. Just recently > got worse and I lost a lot of weight-down to a size 4. Also I am a > senior.> My questions are about Nac. Was told by a former pulmonary > doctor and my present doctor to try Nac 600 mg 3 times a day.

But > when I took it 3 times a day had a very strange reaction. I could > not sleep and was up all night for days and also became very > hyperactive. When I reduced dosage of the Vitamin to 2 times a day I > was still somewhat hyperactive and maybe got 3 hours of sleep a > night. Reduced capsule to one a day and slept much better at night > but was back to being tired and not as active during the day.> My questions: Do you know of any members who had the same > reaction to Nac? Are all brands of the Vitamin so bad smelling and > bad tasting? Most important a) Is there somewhere I can get this > vitamin in a pill form (so I can cut it in half and take 1 and ½ > pills a day) or somewhere I can get a capsule of 300 mg c) are > there any other vitamins or supplements which are helpful? What is > this prednisome ? - also there seems to be conflicting

medical > studies and opinions on medications that help. Would also like to > know if any members are in clinical trials and how they are doing. I > would love to participate in a trial and will investigate that > later. Thank you for any help you can give me on this and thank you > for setting up this Support Web site>

[Guest guest]

Joy. You will be flooded with replies. NAC is N-Acetyl Cysteine It is used for mucus/cough. Most of us take it. No side effects. Only one person said they had some, but it may not have been just the NAC...

Easily purchased from www.puritan.com at a very reasonable price.

When I was first diagnosed I had a bad cough/spit up junk and after NAC...none of either. Usual dosage is 3x day...600 mg.

Pulmonologists recommend it and my naturopathic Dr gave the ok too.

Sher ipf 5-06

- Original Message -----

From: Joy

To: Breathe-Support

Sent: Monday, November 06, 2006 4:47 PM

Subject: Re: Re: Nac -To Leanne Storch, Beth and members

Okay, I've gotta ask. What is NAC? Joy 3/6

Joy

(IPF 3/06)

Today is a gift for each

of us. Enjoy it.

Nac -To Leanne Storch, Beth and members> > > To Leanne Storch, Beth and members Re: NAC> > Hi, my name is Lillian and I am a fairly new member although > I apparently have had fibrosis for a number of years. Just recently > got worse and I lost a lot of weight-down to a size 4. Also I am a > senior.> My questions are about Nac. Was told by a former pulmonary > doctor and my present doctor to try Nac 600 mg 3 times a day. But > when I took it 3 times a day had a very strange reaction. I could > not sleep and was up all night for days and also became very > hyperactive. When I reduced dosage of the Vitamin to 2 times a day I > was still somewhat hyperactive and maybe got 3 hours of sleep a > night. Reduced capsule to one a day and slept much better at night > but was back to being tired and not as active during the day.> My questions: Do you know of any members who had the same > reaction to Nac? Are all brands of the Vitamin so bad smelling and > bad tasting? Most important a) Is there somewhere I can get this > vitamin in a pill form (so I can cut it in half and take 1 and ½ > pills a day) or somewhere I can get a capsule of 300 mg c) are > there any other vitamins or supplements which are helpful? What is > this prednisome ? - also there seems to be conflicting medical > studies and opinions on medications that help. Would also like to > know if any members are in clinical trials and how they are doing. I > would love to participate in a trial and will investigate that > later. Thank you for any help you can give me on this and thank you > for setting up this Support Web site>

[Guest guest]

Joyce,

Was interested in this post. I use Prilosec daily. How do you get the generic? I just buy OTC. Gets expensive.

Re: Nac -To Leanne Storch, Beth and members> > > All,> > During the easter egg hunt that ended with my IPF diagnosis, I had a > lung biopsy. The main problem was that I felt like a mule had kicked me > in the chest for several days. The option was to leave the possibility > of lung cancer hanging there. I was fortunate (?) and did not have > cancer. The Biopsy was performed at the University of Virginia Medical > Center by some of the top line surgeons. ( The Dr would not tell me > where he kept his mule).> > Bottom line, there is risk in all we do with IPF and related symptoms. > Over the counter NAC, I think, is among those risks. The pharmaceutical > grade by script is much safer, again in my opinion. The side affects of > Predisone is another.... Anyway we should keep in mind the trade offs > between procedures and what it will do or not do for us vs the risk(s). > Further, as many of you have said, this whole IPF deal seems to be a > guess so we just keep searching.> > Regards> > >

[Guest guest]

,

The doc prescribed 80mg a day, which is a very high dose, but I am having problems with scarring on my larynx and the ENT is leaning toward reflux. I was on 20, then 40. I have always gotten the generic, Omeprazole. This time they gave me prescription Prozac 40mg X 2 a day. The copay was really high. I asked the pharmicist why they didn't give me generic and he said generic only came at 20 mg....and that I would have to take 4 capsules a day. I told him that I could take more pills to save money...so he filled it like that. Cost $15.

Sooooo....I don't know the mg that you are taking, but maybe if your doc prescribed a bigger dose you would have to get prescription strength and then ask for generic. You could always take less. I tried everything to get the Mucinex prescription. My doc works with me. We looked it up in his office and tried a larger dose prescription and the pharmacist told me they just were not making gualifessin through prescription now.

Hope this helped. I don't explain things well.

Hugs, Joyce PF 1997 Bronchiectasis 2004

> >> > .> > This is the first I've known about pharmacy grade NAC! I will call tomorrow and request a script. I just saw my Dr. on Friday and commented about the supplements that can't be counted toward "medical" expenses and he DIDN'T SAY A WORD. Fortunately, NAC is not expensive but it's the principal when insurance will help pay. Maybe another such 'otc' would cost plenty. > > Dr. also prescribes Prilosec and that is expensive at one a day. If there is a pharmacy grade maybe ins. will help. Although come to think the co-pay is so damn high for certain drugs that otc is about the same I suppose.> > Can't get ahead.........> > Thanks. Sher ipf 5-06> > Re: Nac -To Leanne Storch, Beth and members> > > > > > All,> > > > During the easter egg hunt that ended with my IPF diagnosis, I had a > > lung biopsy. The main problem was that I felt like a mule had kicked me > > in the chest for several days. The option was to leave the possibility > > of lung cancer hanging there. I was fortunate (?) and did not have > > cancer. The Biopsy was performed at the University of Virginia Medical > > Center by some of the top line surgeons. ( The Dr would not tell me > > where he kept his mule).> > > > Bottom line, there is risk in all we do with IPF and related symptoms. > > Over the counter NAC, I think, is among those risks. The pharmaceutical > > grade by script is much safer, again in my opinion. The side affects of > > Predisone is another.... Anyway we should keep in mind the trade offs > > between procedures and what it will do or not do for us vs the risk(s). > > Further, as many of you have said, this whole IPF deal seems to be a > > guess so we just keep searching.> > > > Regards> > > > > >>