MAC treatment

[ladybug]

Hello hello!

Well, I can't get in to see infectious disease doc until next week sometime, but I was VERY persistant today that we start SOMETHING NOW. So, CF doc is putting me on azithro MWF 500 mg and something else (I think it starts with an e?) three times a week. They will also add on another oral med, but they need to do an eye check first for that (next week I suppose).

So, for now I'm only starting on 2 meds, but hopefully they will at least start to do something until i can get on the actual meds next week.

Do you guys think I was smart insisting we start something, even if it is something that probably isn't the best combo or the combo the infectious disease doc has "ok'd"? They're just going with what they have used before for MAC and also what literature says to use. I personally just want to start SOMETHING.

Any other pointers when treating this bugger? How will these orals make me feel?

Also, how many of you treating mac are/were on IV for it? The nurse said they don't do IV for mac unless my sensitivities (which are gonna be run next week) are resistant to the orals. Is that your experience with this?

I'm kinda nervous but really excited to try something else. I've been on IV abx for 2 weeks and feeling way worse and FEV1 is down 17% from several weeks ago, so something is going on and it doesn't appear to be the "usual" infection stuff.

Thanks so much.

 

[ladybug]

Hello hello!

Well, I can't get in to see infectious disease doc until next week sometime, but I was VERY persistant today that we start SOMETHING NOW. So, CF doc is putting me on azithro MWF 500 mg and something else (I think it starts with an e?) three times a week. They will also add on another oral med, but they need to do an eye check first for that (next week I suppose).

So, for now I'm only starting on 2 meds, but hopefully they will at least start to do something until i can get on the actual meds next week.

Do you guys think I was smart insisting we start something, even if it is something that probably isn't the best combo or the combo the infectious disease doc has "ok'd"? They're just going with what they have used before for MAC and also what literature says to use. I personally just want to start SOMETHING.

Any other pointers when treating this bugger? How will these orals make me feel?

Also, how many of you treating mac are/were on IV for it? The nurse said they don't do IV for mac unless my sensitivities (which are gonna be run next week) are resistant to the orals. Is that your experience with this?

I'm kinda nervous but really excited to try something else. I've been on IV abx for 2 weeks and feeling way worse and FEV1 is down 17% from several weeks ago, so something is going on and it doesn't appear to be the "usual" infection stuff.

Thanks so much.

 

[ladybug]

Hello hello!

Well, I can't get in to see infectious disease doc until next week sometime, but I was VERY persistant today that we start SOMETHING NOW. So, CF doc is putting me on azithro MWF 500 mg and something else (I think it starts with an e?) three times a week. They will also add on another oral med, but they need to do an eye check first for that (next week I suppose).

So, for now I'm only starting on 2 meds, but hopefully they will at least start to do something until i can get on the actual meds next week.

Do you guys think I was smart insisting we start something, even if it is something that probably isn't the best combo or the combo the infectious disease doc has "ok'd"? They're just going with what they have used before for MAC and also what literature says to use. I personally just want to start SOMETHING.

Any other pointers when treating this bugger? How will these orals make me feel?

Also, how many of you treating mac are/were on IV for it? The nurse said they don't do IV for mac unless my sensitivities (which are gonna be run next week) are resistant to the orals. Is that your experience with this?

I'm kinda nervous but really excited to try something else. I've been on IV abx for 2 weeks and feeling way worse and FEV1 is down 17% from several weeks ago, so something is going on and it doesn't appear to be the "usual" infection stuff.

Thanks so much.

 

[ladybug]

Hello hello!

Well, I can't get in to see infectious disease doc until next week sometime, but I was VERY persistant today that we start SOMETHING NOW. So, CF doc is putting me on azithro MWF 500 mg and something else (I think it starts with an e?) three times a week. They will also add on another oral med, but they need to do an eye check first for that (next week I suppose).

So, for now I'm only starting on 2 meds, but hopefully they will at least start to do something until i can get on the actual meds next week.

Do you guys think I was smart insisting we start something, even if it is something that probably isn't the best combo or the combo the infectious disease doc has "ok'd"? They're just going with what they have used before for MAC and also what literature says to use. I personally just want to start SOMETHING.

Any other pointers when treating this bugger? How will these orals make me feel?

Also, how many of you treating mac are/were on IV for it? The nurse said they don't do IV for mac unless my sensitivities (which are gonna be run next week) are resistant to the orals. Is that your experience with this?

I'm kinda nervous but really excited to try something else. I've been on IV abx for 2 weeks and feeling way worse and FEV1 is down 17% from several weeks ago, so something is going on and it doesn't appear to be the "usual" infection stuff.

Thanks so much.

 

[ladybug]

Hello hello!
<br />
<br />Well, I can't get in to see infectious disease doc until next week sometime, but I was VERY persistant today that we start SOMETHING NOW. So, CF doc is putting me on azithro MWF 500 mg and something else (I think it starts with an e?) three times a week. They will also add on another oral med, but they need to do an eye check first for that (next week I suppose).
<br />
<br />So, for now I'm only starting on 2 meds, but hopefully they will at least start to do something until i can get on the actual meds next week.
<br />
<br />Do you guys think I was smart insisting we start something, even if it is something that probably isn't the best combo or the combo the infectious disease doc has "ok'd"? They're just going with what they have used before for MAC and also what literature says to use. I personally just want to start SOMETHING.
<br />
<br />Any other pointers when treating this bugger? How will these orals make me feel?
<br />
<br />Also, how many of you treating mac are/were on IV for it? The nurse said they don't do IV for mac unless my sensitivities (which are gonna be run next week) are resistant to the orals. Is that your experience with this?
<br />
<br />I'm kinda nervous but really excited to try something else. I've been on IV abx for 2 weeks and feeling way worse and FEV1 is down 17% from several weeks ago, so something is going on and it doesn't appear to be the "usual" infection stuff.
<br />
<br />Thanks so much.

 

[theLostMiler]

I re-read the post and saw that you have been feeling badly for about 2 weeks now.

My experience with non-tb stuff is that it is always a tough decision when deciding when and if to treat it because of mycobacteriums ability to become resistant so quickly. It is especially hard to treat b/c the sensitivities take so long to get back so when you are already feeling badly, you have to wait even longer. Depending on the me and whether the b. cep or the m. abscessus is "flaring" or what my docs are trying to guess which is causing the fevers or whatever (its always an educated guess).

When I got around to meeting the Infectious Disease doctor, he was the one who found I had been getting treated by my old adult cf doctor for the wrong mycobacterium and by the time I got to him, I was only sensitive to one oral antibiotic, Biaxin... my Infectious Disease doctor I think decided to hold off on it, to "save" it for later.

Anyways, my sensitivies have been changing after about two years of only being sensitive to IV abx I am on Levaquin (which is intermediate) and Zyvox (which I am supposed to start taking but am nervous due to previous side effect, so we will see)

okay, I've been off on a tangent...

My doctors normally try to start me on things based on my history when I am feeling especially nasty, and sometimes I get switched up on in the middle of treatment. Overall, I dont think this time will hurt you, I know they dont like to start 'blindly' but everyone knows you gotta do things sometimes so I wouldnt get too worried and I hope you start feeling better soon.

Also would you mind telling me what mycobacterium you have? I dont like using MAC b/c I understand it to be a specific mycobacterium strain (mycobacterium avium complex or something) but I dont know if it is just the general way to talk about any mycobacterium strain.

Sorry, this probably didnt even answer anything haha...

 

[theLostMiler]

I re-read the post and saw that you have been feeling badly for about 2 weeks now.

My experience with non-tb stuff is that it is always a tough decision when deciding when and if to treat it because of mycobacteriums ability to become resistant so quickly. It is especially hard to treat b/c the sensitivities take so long to get back so when you are already feeling badly, you have to wait even longer. Depending on the me and whether the b. cep or the m. abscessus is "flaring" or what my docs are trying to guess which is causing the fevers or whatever (its always an educated guess).

When I got around to meeting the Infectious Disease doctor, he was the one who found I had been getting treated by my old adult cf doctor for the wrong mycobacterium and by the time I got to him, I was only sensitive to one oral antibiotic, Biaxin... my Infectious Disease doctor I think decided to hold off on it, to "save" it for later.

Anyways, my sensitivies have been changing after about two years of only being sensitive to IV abx I am on Levaquin (which is intermediate) and Zyvox (which I am supposed to start taking but am nervous due to previous side effect, so we will see)

okay, I've been off on a tangent...

My doctors normally try to start me on things based on my history when I am feeling especially nasty, and sometimes I get switched up on in the middle of treatment. Overall, I dont think this time will hurt you, I know they dont like to start 'blindly' but everyone knows you gotta do things sometimes so I wouldnt get too worried and I hope you start feeling better soon.

Also would you mind telling me what mycobacterium you have? I dont like using MAC b/c I understand it to be a specific mycobacterium strain (mycobacterium avium complex or something) but I dont know if it is just the general way to talk about any mycobacterium strain.

Sorry, this probably didnt even answer anything haha...

 

[theLostMiler]

I re-read the post and saw that you have been feeling badly for about 2 weeks now.

My experience with non-tb stuff is that it is always a tough decision when deciding when and if to treat it because of mycobacteriums ability to become resistant so quickly. It is especially hard to treat b/c the sensitivities take so long to get back so when you are already feeling badly, you have to wait even longer. Depending on the me and whether the b. cep or the m. abscessus is "flaring" or what my docs are trying to guess which is causing the fevers or whatever (its always an educated guess).

When I got around to meeting the Infectious Disease doctor, he was the one who found I had been getting treated by my old adult cf doctor for the wrong mycobacterium and by the time I got to him, I was only sensitive to one oral antibiotic, Biaxin... my Infectious Disease doctor I think decided to hold off on it, to "save" it for later.

Anyways, my sensitivies have been changing after about two years of only being sensitive to IV abx I am on Levaquin (which is intermediate) and Zyvox (which I am supposed to start taking but am nervous due to previous side effect, so we will see)

okay, I've been off on a tangent...

My doctors normally try to start me on things based on my history when I am feeling especially nasty, and sometimes I get switched up on in the middle of treatment. Overall, I dont think this time will hurt you, I know they dont like to start 'blindly' but everyone knows you gotta do things sometimes so I wouldnt get too worried and I hope you start feeling better soon.

Also would you mind telling me what mycobacterium you have? I dont like using MAC b/c I understand it to be a specific mycobacterium strain (mycobacterium avium complex or something) but I dont know if it is just the general way to talk about any mycobacterium strain.

Sorry, this probably didnt even answer anything haha...

 

[theLostMiler]

I re-read the post and saw that you have been feeling badly for about 2 weeks now.

My experience with non-tb stuff is that it is always a tough decision when deciding when and if to treat it because of mycobacteriums ability to become resistant so quickly. It is especially hard to treat b/c the sensitivities take so long to get back so when you are already feeling badly, you have to wait even longer. Depending on the me and whether the b. cep or the m. abscessus is "flaring" or what my docs are trying to guess which is causing the fevers or whatever (its always an educated guess).

When I got around to meeting the Infectious Disease doctor, he was the one who found I had been getting treated by my old adult cf doctor for the wrong mycobacterium and by the time I got to him, I was only sensitive to one oral antibiotic, Biaxin... my Infectious Disease doctor I think decided to hold off on it, to "save" it for later.

Anyways, my sensitivies have been changing after about two years of only being sensitive to IV abx I am on Levaquin (which is intermediate) and Zyvox (which I am supposed to start taking but am nervous due to previous side effect, so we will see)

okay, I've been off on a tangent...

My doctors normally try to start me on things based on my history when I am feeling especially nasty, and sometimes I get switched up on in the middle of treatment. Overall, I dont think this time will hurt you, I know they dont like to start 'blindly' but everyone knows you gotta do things sometimes so I wouldnt get too worried and I hope you start feeling better soon.

Also would you mind telling me what mycobacterium you have? I dont like using MAC b/c I understand it to be a specific mycobacterium strain (mycobacterium avium complex or something) but I dont know if it is just the general way to talk about any mycobacterium strain.

Sorry, this probably didnt even answer anything haha...

 

[theLostMiler]

I re-read the post and saw that you have been feeling badly for about 2 weeks now.
<br />
<br />My experience with non-tb stuff is that it is always a tough decision when deciding when and if to treat it because of mycobacteriums ability to become resistant so quickly. It is especially hard to treat b/c the sensitivities take so long to get back so when you are already feeling badly, you have to wait even longer. Depending on the me and whether the b. cep or the m. abscessus is "flaring" or what my docs are trying to guess which is causing the fevers or whatever (its always an educated guess).
<br />
<br />When I got around to meeting the Infectious Disease doctor, he was the one who found I had been getting treated by my old adult cf doctor for the wrong mycobacterium and by the time I got to him, I was only sensitive to one oral antibiotic, Biaxin... my Infectious Disease doctor I think decided to hold off on it, to "save" it for later.
<br />
<br />Anyways, my sensitivies have been changing after about two years of only being sensitive to IV abx I am on Levaquin (which is intermediate) and Zyvox (which I am supposed to start taking but am nervous due to previous side effect, so we will see)
<br />
<br />okay, I've been off on a tangent...
<br />
<br />My doctors normally try to start me on things based on my history when I am feeling especially nasty, and sometimes I get switched up on in the middle of treatment. Overall, I dont think this time will hurt you, I know they dont like to start 'blindly' but everyone knows you gotta do things sometimes so I wouldnt get too worried and I hope you start feeling better soon.
<br />
<br />Also would you mind telling me what mycobacterium you have? I dont like using MAC b/c I understand it to be a specific mycobacterium strain (mycobacterium avium complex or something) but I dont know if it is just the general way to talk about any mycobacterium strain.
<br />
<br />Sorry, this probably didnt even answer anything haha...

 

[Ratatosk]

I'm glad for your own piece of mind that they're starting you on something and hopefully you'll get some results. Waiting I'm sure has caused you a lot of anxiety and to have to wait any longer, over the weekend, I'm sure was going to give you even more stress.

Have you been on zithro before? I can do a number on your stomach. DS takes his at night before bed. I don't know if his dosage bothers him, but that was the advice we got here when we thought his vomiting episodes were caused by that. It wasn't, but it was a suggestion that we still follow.

 

[Ratatosk]

I'm glad for your own piece of mind that they're starting you on something and hopefully you'll get some results. Waiting I'm sure has caused you a lot of anxiety and to have to wait any longer, over the weekend, I'm sure was going to give you even more stress.

Have you been on zithro before? I can do a number on your stomach. DS takes his at night before bed. I don't know if his dosage bothers him, but that was the advice we got here when we thought his vomiting episodes were caused by that. It wasn't, but it was a suggestion that we still follow.

 

[Ratatosk]

I'm glad for your own piece of mind that they're starting you on something and hopefully you'll get some results. Waiting I'm sure has caused you a lot of anxiety and to have to wait any longer, over the weekend, I'm sure was going to give you even more stress.

Have you been on zithro before? I can do a number on your stomach. DS takes his at night before bed. I don't know if his dosage bothers him, but that was the advice we got here when we thought his vomiting episodes were caused by that. It wasn't, but it was a suggestion that we still follow.

 

[Ratatosk]

I'm glad for your own piece of mind that they're starting you on something and hopefully you'll get some results. Waiting I'm sure has caused you a lot of anxiety and to have to wait any longer, over the weekend, I'm sure was going to give you even more stress.

Have you been on zithro before? I can do a number on your stomach. DS takes his at night before bed. I don't know if his dosage bothers him, but that was the advice we got here when we thought his vomiting episodes were caused by that. It wasn't, but it was a suggestion that we still follow.

 

[Ratatosk]

I'm glad for your own piece of mind that they're starting you on something and hopefully you'll get some results. Waiting I'm sure has caused you a lot of anxiety and to have to wait any longer, over the weekend, I'm sure was going to give you even more stress.
<br />
<br />Have you been on zithro before? I can do a number on your stomach. DS takes his at night before bed. I don't know if his dosage bothers him, but that was the advice we got here when we thought his vomiting episodes were caused by that. It wasn't, but it was a suggestion that we still follow.

 

[ladybug]

thanks for the support.

yes, i use MAC because that is my particular "type" (mycobacterium avium complex). i think they use the general term NTM (?) to refer to all strains of non-tuberculosis mycobacterium and i know there are a lot of them out there. ick.

i have seen on my culture reports that this is the one that has shown up... there, of course, could be others, but this is the one they say shows up again and again. the only time it didn't show up was when i had a bronch a couple months ago... isn't that odd?!? but, every time i cough something on my own, there is the MAC.

as for the azithro, i actually had no problems on it when taking it for maintenance. that's why i was so depressed when they took me off it a few years back... it was one abx that i felt was easy to take day or night. BUT, i'm sure that can always change, so i will likely take it with food until i see what its gonna do.

 

[ladybug]

thanks for the support.

yes, i use MAC because that is my particular "type" (mycobacterium avium complex). i think they use the general term NTM (?) to refer to all strains of non-tuberculosis mycobacterium and i know there are a lot of them out there. ick.

i have seen on my culture reports that this is the one that has shown up... there, of course, could be others, but this is the one they say shows up again and again. the only time it didn't show up was when i had a bronch a couple months ago... isn't that odd?!? but, every time i cough something on my own, there is the MAC.

as for the azithro, i actually had no problems on it when taking it for maintenance. that's why i was so depressed when they took me off it a few years back... it was one abx that i felt was easy to take day or night. BUT, i'm sure that can always change, so i will likely take it with food until i see what its gonna do.

 

[ladybug]

thanks for the support.

yes, i use MAC because that is my particular "type" (mycobacterium avium complex). i think they use the general term NTM (?) to refer to all strains of non-tuberculosis mycobacterium and i know there are a lot of them out there. ick.

i have seen on my culture reports that this is the one that has shown up... there, of course, could be others, but this is the one they say shows up again and again. the only time it didn't show up was when i had a bronch a couple months ago... isn't that odd?!? but, every time i cough something on my own, there is the MAC.

as for the azithro, i actually had no problems on it when taking it for maintenance. that's why i was so depressed when they took me off it a few years back... it was one abx that i felt was easy to take day or night. BUT, i'm sure that can always change, so i will likely take it with food until i see what its gonna do.

 

[ladybug]

thanks for the support.

yes, i use MAC because that is my particular "type" (mycobacterium avium complex). i think they use the general term NTM (?) to refer to all strains of non-tuberculosis mycobacterium and i know there are a lot of them out there. ick.

i have seen on my culture reports that this is the one that has shown up... there, of course, could be others, but this is the one they say shows up again and again. the only time it didn't show up was when i had a bronch a couple months ago... isn't that odd?!? but, every time i cough something on my own, there is the MAC.

as for the azithro, i actually had no problems on it when taking it for maintenance. that's why i was so depressed when they took me off it a few years back... it was one abx that i felt was easy to take day or night. BUT, i'm sure that can always change, so i will likely take it with food until i see what its gonna do.

 

[ladybug]

thanks for the support.
<br />
<br />yes, i use MAC because that is my particular "type" (mycobacterium avium complex). i think they use the general term NTM (?) to refer to all strains of non-tuberculosis mycobacterium and i know there are a lot of them out there. ick.
<br />
<br />i have seen on my culture reports that this is the one that has shown up... there, of course, could be others, but this is the one they say shows up again and again. the only time it didn't show up was when i had a bronch a couple months ago... isn't that odd?!? but, every time i cough something on my own, there is the MAC.
<br />
<br />as for the azithro, i actually had no problems on it when taking it for maintenance. that's why i was so depressed when they took me off it a few years back... it was one abx that i felt was easy to take day or night. BUT, i'm sure that can always change, so i will likely take it with food until i see what its gonna do.