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I am excluded from using Azithromycin

C

CSalomonson

New member
Hi,

At my quarterly clinic visit on Monday, it seems Azithromycin usage is being discussed with most CF patients, and my Pulmonologist wanted to prescribe it for me. But, after checking on the computer, he realized that I have a "TB Cousin" something and I cannot take it. Does anyone know what a "TB cousin" is? My doctor didn't seem to explain it to me in plain English.
 
C

CSalomonson

New member
Hi,

At my quarterly clinic visit on Monday, it seems Azithromycin usage is being discussed with most CF patients, and my Pulmonologist wanted to prescribe it for me. But, after checking on the computer, he realized that I have a "TB Cousin" something and I cannot take it. Does anyone know what a "TB cousin" is? My doctor didn't seem to explain it to me in plain English.
 
C

CSalomonson

New member
Hi,

At my quarterly clinic visit on Monday, it seems Azithromycin usage is being discussed with most CF patients, and my Pulmonologist wanted to prescribe it for me. But, after checking on the computer, he realized that I have a "TB Cousin" something and I cannot take it. Does anyone know what a "TB cousin" is? My doctor didn't seem to explain it to me in plain English.
 
J

Jem

New member
Hi Craig

I am also excluded from taking azithromycin because I have been treated for Mycobacterium avium complex which is a 'TB Cousin". And if I need to be treated again for it (I have actually been on long term antibiotics 3 times for this in the past 11 years with the last 2 1/2 years testing negative) azithromycin (Zithromax) is one of the possible three drugs they use (simultaneously) so they do not want me to build up a resistance to the drug in case I should need it.

Have you ever been treated for your "TB Cousin?"
 
J

Jem

New member
Hi Craig

I am also excluded from taking azithromycin because I have been treated for Mycobacterium avium complex which is a 'TB Cousin". And if I need to be treated again for it (I have actually been on long term antibiotics 3 times for this in the past 11 years with the last 2 1/2 years testing negative) azithromycin (Zithromax) is one of the possible three drugs they use (simultaneously) so they do not want me to build up a resistance to the drug in case I should need it.

Have you ever been treated for your "TB Cousin?"
 
J

Jem

New member
Hi Craig

I am also excluded from taking azithromycin because I have been treated for Mycobacterium avium complex which is a 'TB Cousin". And if I need to be treated again for it (I have actually been on long term antibiotics 3 times for this in the past 11 years with the last 2 1/2 years testing negative) azithromycin (Zithromax) is one of the possible three drugs they use (simultaneously) so they do not want me to build up a resistance to the drug in case I should need it.

Have you ever been treated for your "TB Cousin?"
 
D

dramamama

New member
Hi Craig...
you have a cousin of tb? Most likely you are saying that you have an atypical tb...a member of the mycobacterium family. Atypical tb is like tb, in that it is hard to treat and requires more than one drug, normally three actually, to treat it. It is very hard to eradicate and the normal course of action is just to sit on it and wait to see if it does any damage....sometimes cfers are colonized with atypical tb and it does very little damage....other times it can become aggressive. There are two types that normally affect cfers, but different mycobateriums are being discovered in our population more and more because now they are tested for them....using an acid fast smear. Most likely you have mycobacterium avium..a slow grower and easier to treat...or mycobacterium abscessus(cheloni) ...a fast grower and harder to treat. I had m. avium was treated just with biaxin and it morphed into abscessus...not good.

Anyway, zithromax is one of the drugs that is readliy prescribed in the cocktail to treat atypical tb...so they want you to have it in the arsenal if you ever need to treat this bug.

Hope this helps.
don't worry there are several of us on here who have this family of bugs and we are doing pretty well.
mandy cf/cfrd
 
D

dramamama

New member
Hi Craig...
you have a cousin of tb? Most likely you are saying that you have an atypical tb...a member of the mycobacterium family. Atypical tb is like tb, in that it is hard to treat and requires more than one drug, normally three actually, to treat it. It is very hard to eradicate and the normal course of action is just to sit on it and wait to see if it does any damage....sometimes cfers are colonized with atypical tb and it does very little damage....other times it can become aggressive. There are two types that normally affect cfers, but different mycobateriums are being discovered in our population more and more because now they are tested for them....using an acid fast smear. Most likely you have mycobacterium avium..a slow grower and easier to treat...or mycobacterium abscessus(cheloni) ...a fast grower and harder to treat. I had m. avium was treated just with biaxin and it morphed into abscessus...not good.

Anyway, zithromax is one of the drugs that is readliy prescribed in the cocktail to treat atypical tb...so they want you to have it in the arsenal if you ever need to treat this bug.

Hope this helps.
don't worry there are several of us on here who have this family of bugs and we are doing pretty well.
mandy cf/cfrd
 
D

dramamama

New member
Hi Craig...
you have a cousin of tb? Most likely you are saying that you have an atypical tb...a member of the mycobacterium family. Atypical tb is like tb, in that it is hard to treat and requires more than one drug, normally three actually, to treat it. It is very hard to eradicate and the normal course of action is just to sit on it and wait to see if it does any damage....sometimes cfers are colonized with atypical tb and it does very little damage....other times it can become aggressive. There are two types that normally affect cfers, but different mycobateriums are being discovered in our population more and more because now they are tested for them....using an acid fast smear. Most likely you have mycobacterium avium..a slow grower and easier to treat...or mycobacterium abscessus(cheloni) ...a fast grower and harder to treat. I had m. avium was treated just with biaxin and it morphed into abscessus...not good.

Anyway, zithromax is one of the drugs that is readliy prescribed in the cocktail to treat atypical tb...so they want you to have it in the arsenal if you ever need to treat this bug.

Hope this helps.
don't worry there are several of us on here who have this family of bugs and we are doing pretty well.
mandy cf/cfrd
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dramamama</b></i>

Hi Craig...

you have a cousin of tb? Most likely you are saying that you have an atypical tb...a member of the mycobacterium family. Atypical tb is like tb, in that it is hard to treat and requires more than one drug, normally three actually, to treat it. It is very hard to eradicate and the normal course of action is just to sit on it and wait to see if it does any damage....sometimes cfers are colonized with atypical tb and it does very little damage....other times it can become aggressive. There are two types that normally affect cfers, but different mycobateriums are being discovered in our population more and more because now they are tested for them....using an acid fast smear. Most likely you have mycobacterium avium..a slow grower and easier to treat...or mycobacterium abscessus(cheloni) ...a fast grower and harder to treat. I had m. avium was treated just with biaxin and it morphed into abscessus...not good.



Anyway, zithromax is one of the drugs that is readliy prescribed in the cocktail to treat atypical tb...so they want you to have it in the arsenal if you ever need to treat this bug.



Hope this helps.

don't worry there are several of us on here who have this family of bugs and we are doing pretty well.

mandy cf/cfrd</end quote></div>

Yeah, yeah.....what Mandy said LOL!
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dramamama</b></i>

Hi Craig...

you have a cousin of tb? Most likely you are saying that you have an atypical tb...a member of the mycobacterium family. Atypical tb is like tb, in that it is hard to treat and requires more than one drug, normally three actually, to treat it. It is very hard to eradicate and the normal course of action is just to sit on it and wait to see if it does any damage....sometimes cfers are colonized with atypical tb and it does very little damage....other times it can become aggressive. There are two types that normally affect cfers, but different mycobateriums are being discovered in our population more and more because now they are tested for them....using an acid fast smear. Most likely you have mycobacterium avium..a slow grower and easier to treat...or mycobacterium abscessus(cheloni) ...a fast grower and harder to treat. I had m. avium was treated just with biaxin and it morphed into abscessus...not good.



Anyway, zithromax is one of the drugs that is readliy prescribed in the cocktail to treat atypical tb...so they want you to have it in the arsenal if you ever need to treat this bug.



Hope this helps.

don't worry there are several of us on here who have this family of bugs and we are doing pretty well.

mandy cf/cfrd</end quote></div>

Yeah, yeah.....what Mandy said LOL!
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dramamama</b></i>

Hi Craig...

you have a cousin of tb? Most likely you are saying that you have an atypical tb...a member of the mycobacterium family. Atypical tb is like tb, in that it is hard to treat and requires more than one drug, normally three actually, to treat it. It is very hard to eradicate and the normal course of action is just to sit on it and wait to see if it does any damage....sometimes cfers are colonized with atypical tb and it does very little damage....other times it can become aggressive. There are two types that normally affect cfers, but different mycobateriums are being discovered in our population more and more because now they are tested for them....using an acid fast smear. Most likely you have mycobacterium avium..a slow grower and easier to treat...or mycobacterium abscessus(cheloni) ...a fast grower and harder to treat. I had m. avium was treated just with biaxin and it morphed into abscessus...not good.



Anyway, zithromax is one of the drugs that is readliy prescribed in the cocktail to treat atypical tb...so they want you to have it in the arsenal if you ever need to treat this bug.



Hope this helps.

don't worry there are several of us on here who have this family of bugs and we are doing pretty well.

mandy cf/cfrd</end quote></div>

Yeah, yeah.....what Mandy said LOL!
 
C

CowTown

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CSalomonson</b></i>

Hi,
At my quarterly clinic visit on Monday, it seems Azithromycin usage is being discussed with most CF patients, and my Pulmonologist wanted to prescribe it for me. But, after checking on the computer, he realized that I have a "TB Cousin" something and I cannot take it. Does anyone know what a "TB cousin" is? My doctor didn't seem to explain it to me in plain English.</end quote></div>



Hi Craig,

I have had one of the "tb cousins" called Mycobacterium Avium Complex (MAC) for about 10 years now. This past year has been the first time we're aggressivley treating it and Azithromycin is one of my 3 meds for it. For me, the meds seems to be working well. Depending on which strain mycobacterium you have, you will be prescribed the correct meds. I'm guessing if your doctor has decided for you not to take Azithromycin, that probably just means that sensitivity tests have shown you're not sensitive to it (your bug won't react to it). Sensitity tests tell the docts which meds to use for you, which can differ a bit from one persona to another.

I never got a lot of information from my doctor either on the subject, and they sent me to a MAC specialist. I finally got much needed info from the specialist though which was great. Maybe ask them the name of the TB cousin, how long you've cultured it, what their plan is and if you can see a mycobacterium specialist.

Here is a link with some mycobacteria info:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.nationaljewish.org/disease-info/diseases/nts-mycobac/index.aspx
">http://www.nationaljewish.org/...obac/index.aspx
</a>

Here's the most well known group that treats mycobacterias, National Jewish Medical and Research Center. They're the hotshots.:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.njc.org/
">http://www.njc.org/
</a>


Good luck with the treatment!
 
C

CowTown

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CSalomonson</b></i>

Hi,
At my quarterly clinic visit on Monday, it seems Azithromycin usage is being discussed with most CF patients, and my Pulmonologist wanted to prescribe it for me. But, after checking on the computer, he realized that I have a "TB Cousin" something and I cannot take it. Does anyone know what a "TB cousin" is? My doctor didn't seem to explain it to me in plain English.</end quote></div>



Hi Craig,

I have had one of the "tb cousins" called Mycobacterium Avium Complex (MAC) for about 10 years now. This past year has been the first time we're aggressivley treating it and Azithromycin is one of my 3 meds for it. For me, the meds seems to be working well. Depending on which strain mycobacterium you have, you will be prescribed the correct meds. I'm guessing if your doctor has decided for you not to take Azithromycin, that probably just means that sensitivity tests have shown you're not sensitive to it (your bug won't react to it). Sensitity tests tell the docts which meds to use for you, which can differ a bit from one persona to another.

I never got a lot of information from my doctor either on the subject, and they sent me to a MAC specialist. I finally got much needed info from the specialist though which was great. Maybe ask them the name of the TB cousin, how long you've cultured it, what their plan is and if you can see a mycobacterium specialist.

Here is a link with some mycobacteria info:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.nationaljewish.org/disease-info/diseases/nts-mycobac/index.aspx
">http://www.nationaljewish.org/...obac/index.aspx
</a>

Here's the most well known group that treats mycobacterias, National Jewish Medical and Research Center. They're the hotshots.:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.njc.org/
">http://www.njc.org/
</a>


Good luck with the treatment!
 
C

CowTown

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CSalomonson</b></i>

Hi,
At my quarterly clinic visit on Monday, it seems Azithromycin usage is being discussed with most CF patients, and my Pulmonologist wanted to prescribe it for me. But, after checking on the computer, he realized that I have a "TB Cousin" something and I cannot take it. Does anyone know what a "TB cousin" is? My doctor didn't seem to explain it to me in plain English.</end quote></div>



Hi Craig,

I have had one of the "tb cousins" called Mycobacterium Avium Complex (MAC) for about 10 years now. This past year has been the first time we're aggressivley treating it and Azithromycin is one of my 3 meds for it. For me, the meds seems to be working well. Depending on which strain mycobacterium you have, you will be prescribed the correct meds. I'm guessing if your doctor has decided for you not to take Azithromycin, that probably just means that sensitivity tests have shown you're not sensitive to it (your bug won't react to it). Sensitity tests tell the docts which meds to use for you, which can differ a bit from one persona to another.

I never got a lot of information from my doctor either on the subject, and they sent me to a MAC specialist. I finally got much needed info from the specialist though which was great. Maybe ask them the name of the TB cousin, how long you've cultured it, what their plan is and if you can see a mycobacterium specialist.

Here is a link with some mycobacteria info:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.nationaljewish.org/disease-info/diseases/nts-mycobac/index.aspx
">http://www.nationaljewish.org/...obac/index.aspx
</a>

Here's the most well known group that treats mycobacterias, National Jewish Medical and Research Center. They're the hotshots.:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.njc.org/
">http://www.njc.org/
</a>


Good luck with the treatment!
 
C

CSalomonson

New member
Hi all,

Thank you so much for your information, I learned a lot from your responses. For Jem, no, I have never been treated for my TB Cousin, which I do in fact recall my doctor saying it was the Mycobacterium Avium, now that I think about it. Monday was the first time I have heard about my having this bug. I am so surprised they haven't treated it in the past. I also culture Staph and two strains of Pseudomonas.

The CF clinic mentioned that they were prescribing Azithromycin to patients primarily as a 3 pill per week therapy to maintain or increase PFT's. So, they did not mention using the Azithromycin to treat the TB bug, or any other antibiotic for that matter. I will be more aggressive in my questioning for the docs the next visit at the clinic.
 
C

CSalomonson

New member
Hi all,

Thank you so much for your information, I learned a lot from your responses. For Jem, no, I have never been treated for my TB Cousin, which I do in fact recall my doctor saying it was the Mycobacterium Avium, now that I think about it. Monday was the first time I have heard about my having this bug. I am so surprised they haven't treated it in the past. I also culture Staph and two strains of Pseudomonas.

The CF clinic mentioned that they were prescribing Azithromycin to patients primarily as a 3 pill per week therapy to maintain or increase PFT's. So, they did not mention using the Azithromycin to treat the TB bug, or any other antibiotic for that matter. I will be more aggressive in my questioning for the docs the next visit at the clinic.
 
C

CSalomonson

New member
Hi all,

Thank you so much for your information, I learned a lot from your responses. For Jem, no, I have never been treated for my TB Cousin, which I do in fact recall my doctor saying it was the Mycobacterium Avium, now that I think about it. Monday was the first time I have heard about my having this bug. I am so surprised they haven't treated it in the past. I also culture Staph and two strains of Pseudomonas.

The CF clinic mentioned that they were prescribing Azithromycin to patients primarily as a 3 pill per week therapy to maintain or increase PFT's. So, they did not mention using the Azithromycin to treat the TB bug, or any other antibiotic for that matter. I will be more aggressive in my questioning for the docs the next visit at the clinic.
 
J

Jem

New member
If you do have your MAC treated the drug regime is a long one. Three different oral antibiotics for at least 18 months. Azithromycin is one option to use for one of the three drugs in the treatment cocktail. Whether to treat or not depends on if the MAC is affecting your lung function. The first two times I underwent the long term treatments I experienced no side effects but the last time, several years back, I was nauseous and weak through the entire treatment. I also experienced joint pain in my hands, elbows and ankles which completely disappeared 4 months after I finished my course of treatment. I feel perfectly fine now and I hope to remain so for a very long time to come.<img src="i/expressions/face-icon-small-smile.gif" border="0">

Kelly posted some great web links for you to check out.
I did have problems opening them so try this link:

<a target=_blank class=ftalternatingbarlinklarge href="http://ntminfo.org/">http://ntminfo.org/</a>
Good luck to you, Craig.
 
J

Jem

New member
If you do have your MAC treated the drug regime is a long one. Three different oral antibiotics for at least 18 months. Azithromycin is one option to use for one of the three drugs in the treatment cocktail. Whether to treat or not depends on if the MAC is affecting your lung function. The first two times I underwent the long term treatments I experienced no side effects but the last time, several years back, I was nauseous and weak through the entire treatment. I also experienced joint pain in my hands, elbows and ankles which completely disappeared 4 months after I finished my course of treatment. I feel perfectly fine now and I hope to remain so for a very long time to come.<img src="i/expressions/face-icon-small-smile.gif" border="0">

Kelly posted some great web links for you to check out.
I did have problems opening them so try this link:

<a target=_blank class=ftalternatingbarlinklarge href="http://ntminfo.org/">http://ntminfo.org/</a>
Good luck to you, Craig.
 
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