Re: Re: Medications for MAC and liver function

August 6, 2006

Norma and and Jan,

My MAC was dx quite a while ago with a bronchoscopy and recently (in March)with sputum cultures. Years ago I was put on these 3 antibiotics and again now. When I get really sick, they are the only meds that pulmonoligists have ever put me on if a brief try of other antibiotics doesn't work to eliminate the infection (meds are Rifampin, Ethambutol and Azithromycin). I always have to have monthly liver labs done via blood test and I'm supposed to have monthly eye exams but past and present eye drs say that's not important and they suggest every 3 months. Ntl Jewish had told me yrs ago that MAC should be treated too. I don't know what type of MAC I have, have just been told "MAC." I will try to find out.

I'm not sure about side effects, nothing really obvious. I don't have any stomach problems. I do get dry eyes, I wear contacts, but didn't know that could be from any of these meds. I was having REALLY bad problems with night sweats, as well as during the day at work, started mid afternoon and I was sure my face was turning beet red as I met with clients. Like many on this website, I'm caucasian, female, 58yo, and under weight. (Have lost more weight when weighed at last 2 pulmo appts). Thinking the sweats and flushing might be related to menopause symptoms, I started back on a whole HRT tablet after trying a half for several months then weaning off. Now that I'm back on a whole HRT for about 6 weeks, day and night sweats have greatly diminished, sometimes down to zero. Seemed to start up some last week when I started the inhaler QVar for the first time. So now I wonder if the sweats were/are due to one of the antibiotics and if it really is from a fever?? QVar is a steroid inhaler so not sure what that will kick up either.

When I first started on these meds when first dx, I was told I'd have to be on them for life. I got better and was finally taken off of them. Would then start again when I got an infection (always when I flew long distances), would get better quickly and usually off of them in a month or so. This time I got sick in November, couldn't get anyone to put me on the right meds, so finally started these 3 in March and I'm still on them with no end in sight. Yes, , I am some better finally. This week is the best I've felt since November, but not sure what has made the difference. The symptoms of infection are what are finally gone, the ongoing temps, very sore chest and ribcage, nonstop coughing and very exhausted. I don't cough up much junk, never have, but it's pretty minimal now. Still cough daily and have to use cough drops at work to keep from coughing when with clients. SO, now my regimen is the 3 abx in the morning, serevent one puff AM and PM, QVar 3 puffs in AM and PM, nebulizer in PM with saline and one drop of tea tree oil, I take quite a few vitamins and one fish oil capsule, and a packet of EmergenC in water with lunch for extra Vit C. Had been doing daily nasal/sinus irrigation with Saline Mist even though I don't seem to have sinus problems. That always made my sinuses feel better but I've stopped that for a while now while there doesn't seem to be too much junk in the air.

I think that answers the questions I've gotten. Someone on here described the lung pain like being kicked in the back by a horse - fits how I'd describe my pain too, and oddly mine is mid back on the right also. I don't have it often fortunately, today was the longest ever. I have no idea what causes that at intermittent times.........strange goings on with this disease.........

, Portland, OR

Message -----

From: Norma Henry

To: bronchiectasis@yahoogroupscom

Sent: Sunday, August 06, 2006 8:05 PM

Subject: Re: Medications for MAC

and Jan,

When I had my bronchscopy diagnosing bronchiectasis six years ago, I called my pulmonary doctor's nurse and mentioned that I was having night sweats. She told me to make an appointment with my opthamologist immediately and also have a liver function test. I was prescribed Rifamate Capsules and Ethambutol. I was unable to take the medications due to the side effects. I reported this to the doctor, and he said that I should stop them since he had not received all of my lab test results. I have a copy of my medical records. It mentions that mycobacterium fortuitum group was identified at the state health department. Both my pulmonary doctor and infectious disease doctor said that it is just a colonizer. I have talked to National Jewish Hospital in Denver, and they think that it should be treated. What type of test did you have that indicated that the MAC should be treated? What type of MAC do you have?

Norma (Austin, Texas)

August 7, 2006

and Jan, It sounds like you are having an infection with MAC. There is a difference between colonization and infection. That is what my infectious disease doctor said when I had sinus surgery about six years ago when the ENT found pseudomonas from a culture taken during surgery the first time. He referred me to the infectious doctor. She explained that a colonization was similar to germs we would find on the outside of the body--they are there but are not causing an infection. After my second sinus surgery to reduce the size of one of the turbinates, a pseudomonas infection was cultured. I was treated with inhaled bethamethasone (sp?) steroid and inhaled Tobramycin for a few months. Since then I have not had any sinus infections. The nurse at National Jewish said that with night sweats there is a low grade fever prior to

the sweats. I am going to ask my infectious disease doctor more about the night sweats when I see her again. Last week when I saw my pulmonary doctor and told him about it, he did not seem concerned. I was recently hospitalized with viral gastroenteritis that I caught from my husband, became dehydrated and was also diagnosed with pneumonia. I was given IV Zosyn antibiotic, IV fluids, and IVs for loss of magnesium and phosphous from the dehydration. I was discharged with Azithromycin, Sulfameth/Trimethoprim and prophylactic Metronidazole (generic Flagyl) since I have had c difficile colitis once previously. After I completed these antibiotics, I no longer have the night sweats. Jan - I note that you are from St. Louis. I am from Nashville, Illinois which is about 50 miles east of St. Louis. I have several cousins, a 104-year old aunt and many friends who live

there. We have lived in five Midwestern states and moved to Texas a little over 20 years ago. Norma (Austin, Texas) 72 - diagnosed with bronchiectasis at age 67 L H ROTERING wrote: Norma and and Jan, My MAC was dx quite a while ago with a bronchoscopy and recently (in March)with sputum cultures. Years ago I was put on these 3

antibiotics and again now. When I get really sick, they are the only meds that pulmonoligists have ever put me on if a brief try of other antibiotics doesn't work to eliminate the infection (meds are Rifampin, Ethambutol and Azithromycin). I always have to have monthly liver labs done via blood test and I'm supposed to have monthly eye exams but past and present eye drs say that's not important and they suggest every 3 months. Ntl Jewish had told me yrs ago that MAC should be treated too. I don't know what type of MAC I have, have just been told "MAC." I will try to find out. I'm not sure about side effects, nothing really obvious. I don't have any stomach problems. I do get dry eyes, I wear contacts, but didn't know that could be from any of these meds. I was having REALLY bad problems with night sweats, as well as during the day at work, started mid afternoon and I was sure my

face was turning beet red as I met with clients. Like many on this website, I'm caucasian, female, 58yo, and under weight. (Have lost more weight when weighed at last 2 pulmo appts). Thinking the sweats and flushing might be related to menopause symptoms, I started back on a whole HRT tablet after trying a half for several months then weaning off. Now that I'm back on a whole HRT for about 6 weeks, day and night sweats have greatly diminished, sometimes down to zero. Seemed to start up some last week when I started the inhaler QVar for the first time. So now I wonder if the sweats were/are due to one of the antibiotics and if it really is from a fever?? QVar is a steroid inhaler so not sure what that will kick up either. When I first started on these meds when first dx, I was told I'd have to be on them for life. I got better and was finally taken off of them. Would then start again when I

got an infection (always when I flew long distances), would get better quickly and usually off of them in a month or so. This time I got sick in November, couldn't get anyone to put me on the right meds, so finally started these 3 in March and I'm still on them with no end in sight. Yes, , I am some better finally. This week is the best I've felt since November, but not sure what has made the difference. The symptoms of infection are what are finally gone, the ongoing temps, very sore chest and ribcage, nonstop coughing and very exhausted. I don't cough up much junk, never have, but it's pretty minimal now. Still cough daily and have to use cough drops at work to keep from coughing when with clients. SO, now my regimen is the 3 abx in the morning, serevent one puff AM and PM, QVar 3 puffs in AM and PM, nebulizer in PM with saline and one drop of tea tree oil, I take quite a few vitamins and one fish oil capsule, and a

packet of EmergenC in water with lunch for extra Vit C. Had been doing daily nasal/sinus irrigation with Saline Mist even though I don't seem to have sinus problems. That always made my sinuses feel better but I've stopped that for a while now while there doesn't seem to be too much junk in the air. I think that answers the questions I've gotten. Someone on here described the lung pain like being kicked in the back by a horse - fits how I'd describe my pain too, and oddly mine is mid back on the right also. I don't have it often fortunately, today was the longest ever. I have no idea what causes that at intermittent times.........strange goings on with this disease......... , Portland, OR Message ----- From: Norma Henry To: bronchiectasis@yahoogroupscom Sent: Sunday, August 06, 2006 8:05 PM Subject: Re: Medications for MAC and Jan, When I had my bronchscopy diagnosing bronchiectasis six years ago, I called my pulmonary doctor's nurse and mentioned that I was having night sweats. She told me to make an appointment with my opthamologist immediately and also have a liver function test. I was prescribed Rifamate Capsules and Ethambutol. I was unable to take the medications due to the side effects. I reported this to the doctor, and he said that I should stop them since he had not

received all of my lab test results. I have a copy of my medical records. It mentions that mycobacterium fortuitum group was identified at the state health department. Both my pulmonary doctor and infectious disease doctor said that it is just a colonizer. I have talked to National Jewish Hospital in Denver, and they think that it should be treated. What type of test did you have that indicated that the MAC should be treated? What type of MAC do you have? Norma (Austin, Texas)

August 7, 2006

Norma –

I have and am being treated for Mycobacterium

Gordonae. They treat it like Tuberculosis. It is a very common bacteria

(found in soil and drinking water) that is usually found in patients with

compromised immune systems. All my tests show that I am healthy….which

makes this a mystery – but the Dr. said my immune system must have been

down at some point. They treat it with the drugs I mentioned.

After 3 weeks – I have been better –

I still have lots of stuff in my lungs – but it is coming up easier –

and I have not had that sick feeling that comes along with the infections…

I was told I would be on this medication

for 9-18 months but it will take a few months to really work. I just switched

Pulmonologist’s – so I will see how he wants to proceed. The one I

was seeing was an Assoc. Professor at UCLA – but his people skills had a

lot to be desired….so I have switched to another well respected Dr. at

UCLA – I was just waiting for a diagnosis.

B.

From:

bronchiectasis [mailto:bronchiectasis ] On Behalf Of Norma Henry

Sent: Monday, August 07, 2006 6:00

AM

To: bronchiectasis

Subject: Re: Re:

Medications for MAC and liver function

and Jan,

It sounds like you are having an infection with MAC. There

is a difference between colonization and infection. That is what my

infectious disease doctor said when I had sinus surgery about six years ago

when the ENT found pseudomonas from a culture taken during surgery the

first time. He referred me to the infectious doctor. She

explained that a colonization was similar to germs we would find on the

outside of the body--they are there but are not causing an infection.

After my second sinus surgery to reduce the size of one of the turbinates,

a pseudomonas infection was cultured. I was treated with inhaled bethamethasone

(sp?) steroid and inhaled Tobramycin for a few months. Since

then I have not had any sinus infections.

The nurse at National Jewish said that with night sweats there is a low

grade fever prior to the sweats. I am going to ask my infectious disease

doctor more about the night sweats when I see her again. Last week when I

saw my pulmonary doctor and told him about it, he did not seem concerned.

I was recently hospitalized with viral gastroenteritis that I

caught from my husband, became dehydrated and was also diagnosed with

pneumonia. I was given IV Zosyn antibiotic, IV fluids, and IVs for loss

of magnesium and phosphous from the dehydration. I was discharged with

Azithromycin, Sulfameth/Trimethoprim and prophylactic Metronidazole

(generic Flagyl) since I have had c difficile colitis once previously.

After I completed these antibiotics, I no longer have the night sweats.

Jan - I note that you are from St. Louis. I am from Nashville, Illinois which is about 50 miles east of St. Louis. I have several

cousins, a 104-year old aunt and many friends who live there. We have

lived in five Midwestern states and moved to Texas a little over 20 years

ago.

Norma (Austin, Texas) 72 - diagnosed with bronchiectasis at age

67

L H ROTERING <roteringlmsn>

wrote:

Norma and and Jan,

My MAC was dx quite a while ago with a bronchoscopy and recently (in

March)with sputum cultures. Years ago I was put on these 3 antibiotics

and again now. When I get really sick, they are the only meds that

pulmonoligists have ever put me on if a brief try of other antibiotics doesn't

work to eliminate the infection (meds are Rifampin, Ethambutol and Azithromycin).

I always have to have monthly liver labs done via blood test and I'm supposed

to have monthly eye exams but past and present eye drs say that's not important

and they suggest every 3 months. Ntl Jewish had told me yrs ago

that MAC should be treated too. I don't know what type of MAC I

have, have just been told " MAC. " I will try to find out.

I'm not sure about side effects, nothing really obvious. I don't

have any stomach problems. I do get dry eyes, I wear contacts, but didn't

know that could be from any of these meds. I was having REALLY bad

problems with night sweats, as well as during the day at work, started mid

afternoon and I was sure my face was turning beet red as I met with

clients. Like many on this website, I'm caucasian, female, 58yo, and

under weight. (Have lost more weight when weighed at last 2 pulmo appts).

Thinking the sweats and flushing might be related to menopause symptoms, I

started back on a whole HRT tablet after trying a half for several months then

weaning off. Now that I'm back on a whole HRT for about 6 weeks, day and

night sweats have greatly diminished, sometimes down to zero. Seemed to

start up some last week when I started the inhaler QVar for the first

time. So now I wonder if the sweats were/are due to one of the

antibiotics and if it really is from a fever?? QVar is a steroid inhaler so

not sure what that will kick up either.

When I first started on these meds when first dx, I was told I'd have

to be on them for life. I got better and was finally taken off of

them. Would then start again when I got an infection (always when I flew

long distances), would get better quickly and usually off of them in a month or

so. This time I got sick in November, couldn't get anyone to put me on the

right meds, so finally started these 3 in March and I'm still on them with no

end in sight. Yes, , I am some better finally. This week is

the best I've felt since November, but not sure what has made the

difference. The symptoms of infection are what are finally gone,

the ongoing temps, very sore chest and ribcage, nonstop coughing and very

exhausted. I don't cough up much junk, never have, but it's pretty

minimal now. Still cough daily and have to use cough drops at work to

keep from coughing when with clients. SO, now my regimen is the 3 abx in

the morning, serevent one puff AM and PM, QVar 3 puffs in AM and PM, nebulizer

in PM with saline and one drop of tea tree oil, I take quite a few vitamins and

one fish oil capsule, and a packet of EmergenC in water with lunch for extra

Vit C. Had been doing daily nasal/sinus irrigation with Saline Mist even

though I don't seem to have sinus problems. That always made my sinuses

feel better but I've stopped that for a while now while there doesn't seem to

be too much junk in the air.

I think that answers the questions I've gotten. Someone on here

described the lung pain like being kicked in the back by a horse - fits

how I'd describe my pain too, and oddly mine is mid back on the right

also. I don't have it often fortunately, today was the longest

ever. I have no idea what causes that at intermittent times.........strange

goings on with this disease.........

, Portland, OR

Message -----

From: Norma Henry

To: bronchiectasis@yahoogroupscom

Sent: Sunday, August 06,

2006 8:05 PM

Subject:

Re: Medications for MAC

and Jan,

When I had my bronchscopy diagnosing bronchiectasis six years ago, I

called my pulmonary doctor's nurse and mentioned that I was having night

sweats. She told me to make an appointment with my

opthamologist immediately and also have a liver function test. I was

prescribed Rifamate Capsules and Ethambutol. I was unable to take the medications

due to the side effects. I reported this to the doctor, and he said that

I should stop them since he had not received all of my lab test

results. I have a copy of my medical records. It mentions that

mycobacterium fortuitum group was identified at the state health

department. Both my pulmonary doctor and infectious disease doctor said

that it is just a colonizer. I have talked to National Jewish Hospital in

Denver, and they think that it should be treated. What type of

test did you have that indicated that the MAC should be treated? What

type of MAC do you have?

Norma (Austin, Texas)

August 7, 2006

, Thanks for the information. I wish you well in your treatment and switch in pulmonologists. NormaTeambrown wrote: Norma – I have and am being treated for Mycobacterium Gordonae. They treat it like Tuberculosis. It is a very common bacteria (found in soil and drinking water) that is usually found in patients with compromised immune systems. All my tests show that I am healthy….which makes this a mystery – but the Dr. said my immune system must have been down at some point. They treat it with the drugs I mentioned. After 3 weeks – I have been better – I still have lots of stuff in my lungs – but it is coming up easier

– and I have not had that sick feeling that comes along with the infections… I was told I would be on this medication for 9-18 months but it will take a few months to really work. I just switched Pulmonologist’s – so I will see how he wants to proceed. The one I was seeing was an Assoc. Professor at UCLA – but his people skills had a lot to be desired….so I have switched to another well respected Dr. at UCLA – I was just waiting for a diagnosis. B. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Norma HenrySent: Monday, August 07, 2006 6:00 AMTo:

bronchiectasis Subject: Re: Re: Medications for MAC and liver function and Jan, It sounds like you are having an infection with MAC. There is a difference between colonization and infection. That is what my infectious disease doctor said when I had sinus surgery about six years ago when the ENT found pseudomonas from a

culture taken during surgery the first time. He referred me to the infectious doctor. She explained that a colonization was similar to germs we would find on the outside of the body--they are there but are not causing an infection. After my second sinus surgery to reduce the size of one of the turbinates, a pseudomonas infection was cultured. I was treated with inhaled bethamethasone (sp?) steroid and inhaled Tobramycin for a few months. Since then I have not had any sinus infections. The nurse at National Jewish said that with night sweats there is a low grade fever prior to the sweats. I am going to ask my infectious disease doctor more about the night sweats

when I see her again. Last week when I saw my pulmonary doctor and told him about it, he did not seem concerned. I was recently hospitalized with viral gastroenteritis that I caught from my husband, became dehydrated and was also diagnosed with pneumonia. I was given IV Zosyn antibiotic, IV fluids, and IVs for loss of magnesium and phosphous from the dehydration. I was discharged with Azithromycin, Sulfameth/Trimethoprim and prophylactic Metronidazole (generic Flagyl) since I have had c difficile colitis once previously. After I completed these antibiotics, I no longer have the night sweats. Jan - I note that you are from St. Louis. I am from Nashville, Illinois which is about 50 miles east of St. Louis. I have several cousins, a 104-year old aunt and many friends who live there. We have lived in five Midwestern states and moved to Texas a little over 20 years ago. Norma (Austin, Texas) 72 - diagnosed with bronchiectasis at age 67 L H ROTERING <roteringlmsn> wrote: Norma and and Jan, My MAC was dx quite a while ago with a bronchoscopy and recently (in March)with sputum cultures. Years ago I was put on these 3 antibiotics and again now. When I get really sick, they are the only meds that pulmonoligists have ever put me on if a brief try of other antibiotics doesn't work to eliminate the infection (meds are Rifampin, Ethambutol and Azithromycin). I always have to have monthly liver labs done via blood test and I'm supposed to have monthly eye exams but past and present eye drs say that's not important and they suggest every 3 months. Ntl Jewish had told me yrs ago that MAC should be treated too. I don't know

what type of MAC I have, have just been told "MAC." I will try to find out. I'm not sure about side effects, nothing really obvious. I don't have any stomach problems. I do get dry eyes, I wear contacts, but didn't know that could be from any of these meds. I was having REALLY bad problems with night sweats, as well as during the day at work, started mid afternoon and I was sure my face was turning beet red as I met with clients. Like many on this website, I'm caucasian, female, 58yo, and under weight. (Have lost more weight when weighed at last 2 pulmo appts). Thinking the sweats and flushing might be related to menopause symptoms, I started back on a whole HRT tablet after trying a

half for several months then weaning off. Now that I'm back on a whole HRT for about 6 weeks, day and night sweats have greatly diminished, sometimes down to zero. Seemed to start up some last week when I started the inhaler QVar for the first time. So now I wonder if the sweats were/are due to one of the antibiotics and if it really is from a fever?? QVar is a steroid inhaler so not sure what that will kick up either. When I first started on these meds when first dx, I was told I'd have to be on them for life. I got better and was finally taken off of them. Would then start again when I got an infection (always when I flew long distances), would get better quickly and usually off of them in a

month or so. This time I got sick in November, couldn't get anyone to put me on the right meds, so finally started these 3 in March and I'm still on them with no end in sight. Yes, , I am some better finally. This week is the best I've felt since November, but not sure what has made the difference. The symptoms of infection are what are finally gone, the ongoing temps, very sore chest and ribcage, nonstop coughing and very exhausted. I don't cough up much junk, never have, but it's pretty minimal now. Still cough daily and have to use cough drops at work to keep from coughing when with clients. SO, now my regimen is the 3 abx in the morning, serevent one puff AM and PM, QVar 3 puffs in AM and PM, nebulizer in PM with saline and one drop of tea tree oil, I take quite a few vitamins and one fish oil capsule, and a packet of EmergenC in water with lunch for extra Vit C. Had been doing daily nasal/sinus irrigation with

Saline Mist even though I don't seem to have sinus problems. That always made my sinuses feel better but I've stopped that for a while now while there doesn't seem to be too much junk in the air. I think that answers the questions I've gotten. Someone on here described the lung pain like being kicked in the back by a horse - fits how I'd describe my pain too, and oddly mine is mid back on the right also. I don't have it often fortunately, today was the longest ever. I have no idea what causes that at intermittent times.........strange goings on with this disease......... , Portland, OR Message ----- From: Norma Henry To: bronchiectasis@yahoogroupscom Sent: Sunday, August 06, 2006 8:05 PM Subject: Re: Medications for MAC and

Jan, When I had my bronchscopy diagnosing bronchiectasis six years ago, I called my pulmonary doctor's nurse and mentioned that I was having night sweats. She told me to make an appointment with my opthamologist immediately and also have a liver function test. I was prescribed Rifamate Capsules and Ethambutol. I was unable to take the medications due to the side effects. I reported this to the doctor, and he said that I should stop them since he had not received all of my lab test results. I have a copy of my medical records. It mentions that mycobacterium fortuitum group was identified at the state health department. Both my pulmonary doctor and infectious disease doctor

said that it is just a colonizer. I have talked to National Jewish Hospital in Denver, and they think that it should be treated. What type of test did you have that indicated that the MAC should be treated? What type of MAC do you have? Norma (Austin, Texas)

August 7, 2006

Jan, I do not live in Nashville, Illinois now but was born near there and moved there in high school. My husband and three children have lived in five Midwestern states. We moved to the Austin, Texas area in 1982. I have fond memories of St. Louis. We lived in Columbia, Missouri from 1959 until 1966 when my husband finished his Ph.D. after which we moved to Indianapolis, then Iowa City, Iowa, Kansas City and then to the Austin area. I hope that by switching from Mycobutin to Rifampin that you will feel better while you are being treated. I would like to go to National Jewish as they are the top respiratory hospital in the U.S. and have always been very helpful when I have talked with one of the Lung Line nurses. I believe that Jewish Hospital in St. Louis is also one of the top respiratory hospitals. I read that in the U.S. News and Report Magazine. My

mother had surgery for a benign brain tumor there. Bests wishes with your treatment, Norma taffy10092000 wrote: Hi Norma in Nashville, IL - We are practically neighbors. Thanks for the information and thanks everyone who responded to my questions. I did e-mail National Jewish recently and I just received their answer to my questions. They did say that the Mycobutin I'm taking can cause a fever and suggested I talk

to my doctor (which I will do very soon). They suggested I talk to him about changing to Rifampin. If that's the route I go, I'll let everyone know how it did. I have noticed from the e-mails that if anyone is on the "three meds", it is usually Rifampin, Azithromycin and Ethambutol. Norma, you also mentioned having sinus surgery. I had deviated septum surgery in 1987 and that is when I started getting very, very small amounts of sputum up. It never bothered me me so I did not tell the doctor. Then in 1992 I was diagnosed with bronchiectasis. I'm not sure if they tested for pseudomonas at that time, but I was treated for pseud. several years later. But I guess it is too late to look back. Need to go forward and try to keep things under control. Jan in St. Louis> Norma and and Jan,> My MAC was dx quite a while ago with a bronchoscopy and recently (in March)with sputum cultures. Years ago I was put on these 3 antibiotics and again now. When I get really sick, they are the only meds that pulmonoligists have ever put me on if a brief try of other antibiotics doesn't work to eliminate the infection (meds are Rifampin, Ethambutol and Azithromycin). I always have to have monthly liver labs done via blood test and I'm supposed to have monthly eye exams but past and present eye drs say that's not important and they suggest every 3 months. Ntl Jewish had told me yrs ago that MAC should be treated too. I don't know what type of MAC I have, have just been told "MAC." I will try to find

out.> > I'm not sure about side effects, nothing really obvious. I don't have any stomach problems. I do get dry eyes, I wear contacts, but didn't know that could be from any of these meds. I was having REALLY bad problems with night sweats, as well as during the day at work, started mid afternoon and I was sure my face was turning beet red as I met with clients. Like many on this website, I'm caucasian, female, 58yo, and under weight. (Have lost more weight when weighed at last 2 pulmo appts). Thinking the sweats and flushing might be related to menopause symptoms, I started back on a whole HRT tablet after trying a half for several months then weaning off. Now that I'm back on a whole HRT for about 6 weeks, day and night sweats have greatly diminished, sometimes down to zero. Seemed to start up some last week when I started the inhaler QVar for the first time. So now I wonder if the sweats were/are due to

one of the antibiotics and if it really is from a fever?? QVar> is a steroid inhaler so not sure what that will kick up either.> > When I first started on these meds when first dx, I was told I'd have to be on them for life. I got better and was finally taken off of them. Would then start again when I got an infection (always when I flew long distances), would get better quickly and usually off of them in a month or so. This time I got sick in November, couldn't get anyone to put me on the right meds, so finally started these 3 in March and I'm still on them with no end in sight. Yes, , I am some better finally. This week is the best I've felt since November, but not sure what has made the difference. The symptoms of infection are what are finally gone, the ongoing temps, very sore chest and ribcage, nonstop coughing and very exhausted. I don't cough up much junk, never have, but it's pretty minimal

now. Still cough daily and have to use cough drops at work to keep from coughing when with clients. SO, now my regimen is the 3 abx in the morning, serevent one puff AM and PM, QVar 3 puffs> in AM and PM, nebulizer in PM with saline and one drop of tea tree oil, I take quite a few vitamins and one fish oil capsule, and a packet of EmergenC in water with lunch for extra Vit C. Had been doing daily nasal/sinus irrigation with Saline Mist even though I don't seem to have sinus problems. That always made my sinuses feel better but I've stopped that for a while now while there doesn't seem to be too much junk in the air.> > I think that answers the questions I've gotten. Someone on here described the lung pain like being kicked in the back by a horse - fits how I'd describe my pain too, and oddly mine is mid back on the right also. I don't have it often fortunately, today was the longest ever. I have no

idea what causes that at intermittent times.........strange goings on with this disease.........> > , Portland, OR> > Message ----- > From: Norma Henry > To: bronchiectasis@yahoogroupscom > Sent: Sunday, August 06, 2006 8:05 PM> Subject: Re: Medications for MAC> > > and Jan,> > When I had my bronchscopy diagnosing bronchiectasis six years ago, I called my pulmonary doctor's nurse and mentioned that I was having night sweats. She told me to make an appointment with my opthamologist immediately and also have a liver function test. I was prescribed Rifamate Capsules and Ethambutol. I was unable to take the medications due to the side effects. I reported this to the doctor, and he said that I should stop them since he had not received all of my lab test results. I have a copy of my medical records. It mentions

that mycobacterium fortuitum group was identified at the state health department. Both my pulmonary doctor and infectious disease doctor said that it is just a colonizer. I have talked to National Jewish Hospital in Denver, and they think that it should be treated. What type of test did you have that indicated that the MAC should be treated? What type of MAC do you have?> > Norma (Austin, Texas)>

August 7, 2006

,

I live in Orange County, California near you. I was interested to read about your infection. I am being treated for Mycobacterium Avian, something similar to what you have. It also is present everywhere and most people are able to resist it. I am taking 3 antiobiotics for 2 years: rifampin, ethambutol and azithromycin. I also was given a 4th antibiotic by IV for the first 6 weeks of the 2 year treatment. This is my second go-round with a 2 year course of antibiotics. The first time I was treated I was taking mycobutin and got very bad muscle pain from it.

It is encouraging to hear from other people who are fighting similar battles to mine--I certainly don't know anyone personally and often feel alone in this. Thank you to all of you!

Kathy

August 8, 2006

–

Watch Qvar, I was on it for awhile with 3

puffs two times a day….started feeling very sick….like a bad case

of the flu – achy, tired, feverish, just horrible…I cut back to 1

puff 2 x’s a day and was fine….so I was obviously taking more than

I could handle…the Dr. did the same with Asthmanex – started me on

3 puffs 2 times a day – raspy voice, again feeling of sick….I

adjusted it to 1 puff 1 x’s a day – and I’m fine…..

Glad you are feeling a bit better.

B

From:

bronchiectasis [mailto:bronchiectasis ] On Behalf Of L H ROTERING

Sent: Sunday, August 06, 2006 9:14

PM