Re: inhaled antibiotic, Colistin

[Guest guest]

I'm so sorry to hear of all your health troubles - very scary.

Do you regularly take an antibiotic? I take Zithromycin M-W-F all the time. If

you don't, perhaps they could try that as $2000 is out of the question for most

of us. I assume your insurance will not cover it.

Suzanne

[Guest guest]

I havent been receiving any emails of late am I doing somethingwrong I did reply

to have mail sent to me Pam

[Guest guest]

Hello Pam

the reason you don't get e-mails is that we have all moved over to a new group

and so no-one is postng here anymore. The new group is bronchiectasis1 and I

will send you and invitation to join us.

Liz

>

> I havent been receiving any emails of late am I doing somethingwrong I did

reply to have mail sent to me Pam

>

[Guest guest]

Hi Norma

sorry to hear of all your health troubles. I hope you are on the mend. Unless

they are still subscribing to messages from this old group site not many people

will have seen your post. We are all at the new group site bronchiectasis1. I

have checked and you are a member.

It's easy to get confused with all the different groups and I see from your post

in another group you came home to hundreds of e-mails!

Try posting in the bronchiectasis1 group and I'm sure you will get more replies.

BW

Liz:)

>

> Hi All,

>

> Has anyone in this group used the inhaled antibiotic, Colistin? My infectious

> disease doctor prescribed this inhaled antibiotic for me to use 15 days each

> month after my most recent hospitalization for pseudomonas pneumonia; however

I

> will not be able to use it as a 15-day supply costs $2,000.

>

>

> I was admitted to the hospital August 5 for 14 days with another pseudomonas

> pneumonia.. I was treated with iv Azactam and inhaled Colistin. I was admitted

> again on August 27 for 6 days. Since my fever was quite high, they did a blood

> culture, and the infectious disease doctor was called in. He increased the

> strength of the Azactam. I was there for six days and then sent to a nursing

> home for two weeks of iv and inhaled antibiotic. The last admission to the

> hospital for pseudomonas pneumonia was the 8th one since my first one in 2008.

I

> wonder what I am not doing correctly to have had so many infections in this

time

> period.

>

>

> Norma

>

[Guest guest]

Hi Norma

sorry to hear of all your health troubles. I hope you are on the mend. Unless

they are still subscribing to messages from this old group site not many people

will have seen your post. We are all at the new group site bronchiectasis1. I

have checked and you are a member.

It's easy to get confused with all the different groups and I see from your post

in another group you came home to hundreds of e-mails!

Try posting in the bronchiectasis1 group and I'm sure you will get more replies.

BW

Liz:)

>

> Hi All,

>

> Has anyone in this group used the inhaled antibiotic, Colistin? My infectious

> disease doctor prescribed this inhaled antibiotic for me to use 15 days each

> month after my most recent hospitalization for pseudomonas pneumonia; however

I

> will not be able to use it as a 15-day supply costs $2,000.

>

>

> I was admitted to the hospital August 5 for 14 days with another pseudomonas

> pneumonia.. I was treated with iv Azactam and inhaled Colistin. I was admitted

> again on August 27 for 6 days. Since my fever was quite high, they did a blood

> culture, and the infectious disease doctor was called in. He increased the

> strength of the Azactam. I was there for six days and then sent to a nursing

> home for two weeks of iv and inhaled antibiotic. The last admission to the

> hospital for pseudomonas pneumonia was the 8th one since my first one in 2008.

I

> wonder what I am not doing correctly to have had so many infections in this

time

> period.

>

>

> Norma

>

[Guest guest]

Hi Liz,

I had forgotten about the new group as that all occurred shortly before I went to the hospital.

Norma

To: bronchiectasis Sent: Tue, September 27, 2011 3:48:16 AMSubject: Re: inhaled antibiotic, Colistin

Hi Normasorry to hear of all your health troubles. I hope you are on the mend. Unless they are still subscribing to messages from this old group site not many people will have seen your post. We are all at the new group site bronchiectasis1. I have checked and you are a member.It's easy to get confused with all the different groups and I see from your post in another group you came home to hundreds of e-mails!Try posting in the bronchiectasis1 group and I'm sure you will get more replies.BWLiz:)>> Hi All,> > Has anyone in this group used the inhaled antibiotic, Colistin? My infectious > disease doctor prescribed this inhaled antibiotic for me to use 15 days

each > month after my most recent hospitalization for pseudomonas pneumonia; however I > will not be able to use it as a 15-day supply costs $2,000. > > > I was admitted to the hospital August 5 for 14 days with another pseudomonas > pneumonia.. I was treated with iv Azactam and inhaled Colistin. I was admitted > again on August 27 for 6 days. Since my fever was quite high, they did a blood > culture, and the infectious disease doctor was called in. He increased the > strength of the Azactam. I was there for six days and then sent to a nursing > home for two weeks of iv and inhaled antibiotic. The last admission to the > hospital for pseudomonas pneumonia was the 8th one since my first one in 2008. I > wonder what I am not doing correctly to have had so many infections in this time > period. > > >

Norma>

[Guest guest]

Hi Liz,

I had forgotten about the new group as that all occurred shortly before I went to the hospital.

Norma

To: bronchiectasis Sent: Tue, September 27, 2011 3:48:16 AMSubject: Re: inhaled antibiotic, Colistin

Hi Normasorry to hear of all your health troubles. I hope you are on the mend. Unless they are still subscribing to messages from this old group site not many people will have seen your post. We are all at the new group site bronchiectasis1. I have checked and you are a member.It's easy to get confused with all the different groups and I see from your post in another group you came home to hundreds of e-mails!Try posting in the bronchiectasis1 group and I'm sure you will get more replies.BWLiz:)>> Hi All,> > Has anyone in this group used the inhaled antibiotic, Colistin? My infectious > disease doctor prescribed this inhaled antibiotic for me to use 15 days

each > month after my most recent hospitalization for pseudomonas pneumonia; however I > will not be able to use it as a 15-day supply costs $2,000. > > > I was admitted to the hospital August 5 for 14 days with another pseudomonas > pneumonia.. I was treated with iv Azactam and inhaled Colistin. I was admitted > again on August 27 for 6 days. Since my fever was quite high, they did a blood > culture, and the infectious disease doctor was called in. He increased the > strength of the Azactam. I was there for six days and then sent to a nursing > home for two weeks of iv and inhaled antibiotic. The last admission to the > hospital for pseudomonas pneumonia was the 8th one since my first one in 2008. I > wonder what I am not doing correctly to have had so many infections in this time > period. > > >

Norma>

[Guest guest]

Suzanne,

I have taken Azithromycin on Monday, Wednesday and Friday for about a year. I have read that others have noticed that it has helped.

Norma

To: bronchiectasis Sent: Mon, September 26, 2011 7:16:25 PMSubject: Re: inhaled antibiotic, Colistin

I'm so sorry to hear of all your health troubles - very scary.Do you regularly take an antibiotic? I take Zithromycin M-W-F all the time. If you don't, perhaps they could try that as $2000 is out of the question for most of us. I assume your insurance will not cover it.Suzanne

[Guest guest]

Suzanne,

I have taken Azithromycin on Monday, Wednesday and Friday for about a year. I have read that others have noticed that it has helped.

Norma

To: bronchiectasis Sent: Mon, September 26, 2011 7:16:25 PMSubject: Re: inhaled antibiotic, Colistin

I'm so sorry to hear of all your health troubles - very scary.Do you regularly take an antibiotic? I take Zithromycin M-W-F all the time. If you don't, perhaps they could try that as $2000 is out of the question for most of us. I assume your insurance will not cover it.Suzanne

[Guest guest]

Norma,So sorry to hear about the recent hospital visits. This is such a difficult disease. Suzanne takes abx every few days. My doctor has been me take an abx once a month for 14 days. We vary the abx every other month. While many on this site do not do the abx unless getting an infection I think that each persons level of disease with the bronch is different. I am probably not as bad as many of you. After reading many of these posts, I feel I am very lucky. So far I do not have to use the vest or inhalers. Anyway according to the Internet, the $2000 medicine has been found to help alot with CF. But you are correct, who can pay $2000?Hope you are feeling better! JoSent from my iPad

Suzanne,

I have taken Azithromycin on Monday, Wednesday and Friday for about a year. I have read that others have noticed that it has helped.

Norma

To: bronchiectasis Sent: Mon, September 26, 2011 7:16:25 PMSubject: Re: inhaled antibiotic, Colistin

I'm so sorry to hear of all your health troubles - very scary.Do you regularly take an antibiotic? I take Zithromycin M-W-F all the time. If you don't, perhaps they could try that as $2000 is out of the question for most of us. I assume your insurance will not cover it.Suzanne

[Guest guest]

Norma,So sorry to hear about the recent hospital visits. This is such a difficult disease. Suzanne takes abx every few days. My doctor has been me take an abx once a month for 14 days. We vary the abx every other month. While many on this site do not do the abx unless getting an infection I think that each persons level of disease with the bronch is different. I am probably not as bad as many of you. After reading many of these posts, I feel I am very lucky. So far I do not have to use the vest or inhalers. Anyway according to the Internet, the $2000 medicine has been found to help alot with CF. But you are correct, who can pay $2000?Hope you are feeling better! JoSent from my iPad

Suzanne,

I have taken Azithromycin on Monday, Wednesday and Friday for about a year. I have read that others have noticed that it has helped.

Norma

To: bronchiectasis Sent: Mon, September 26, 2011 7:16:25 PMSubject: Re: inhaled antibiotic, Colistin

I'm so sorry to hear of all your health troubles - very scary.Do you regularly take an antibiotic? I take Zithromycin M-W-F all the time. If you don't, perhaps they could try that as $2000 is out of the question for most of us. I assume your insurance will not cover it.Suzanne

[Guest guest]

Hi Norma,

It is so awful to be so unwell. Please don't ever think it's because you're

doing / not doing something that is the cause. It really is the " nature of the

beast " ... sadly...

The only med I know of we're given in Aus is Timentin IV, and Tobramycin nebs.

I think Theresa may have had something else but can't remember what now.

However, Aus is behind the rest of the world, and the State I live in is another

2 decades further behind!!

I do hope you're able to get on top of the infx soon, and able to have plenty of

rest...

hugs

joy

[Guest guest]

Hi Norma,

It is so awful to be so unwell. Please don't ever think it's because you're

doing / not doing something that is the cause. It really is the " nature of the

beast " ... sadly...

The only med I know of we're given in Aus is Timentin IV, and Tobramycin nebs.

I think Theresa may have had something else but can't remember what now.

However, Aus is behind the rest of the world, and the State I live in is another

2 decades further behind!!

I do hope you're able to get on top of the infx soon, and able to have plenty of

rest...

hugs

joy

[Guest guest]

hi Pam,

you're still on the old group, you need to move across the new group,

'bronchietasis1' which was formed as the owner/moderator of the old one has been

very ill and unable to continue.

I'll forward this to Liz, who'll be able to send you the link to subscribe to

this group. Otherwise, go to the webpage for this one and you'll find the link

to join the new and very active group.

cheers,

joy

[Guest guest]

To: bronchiectasis Sent: Wed, September 28, 2011 7:47:33 PMSubject: Re: inhaled antibiotic, Colistin

Hi Norma,It is so awful to be so unwell. Please don't ever think it's because you're doing / not doing something that is the cause. It really is the "nature of the beast" ... sadly...The only med I know of we're given in Aus is Timentin IV, and Tobramycin nebs. I think Theresa may have had something else but can't remember what now. However, Aus is behind the rest of the world, and the State I live in is another 2 decades further behind!!I do hope you're able to get on top of the infx soon, and able to have plenty of rest...hugsjoy

Hi Joy,

Thanks for your encouragement. I am trying to get more rest. It was difficult on me having to go back into the hospital a second time 10 days later.

Norma

[Guest guest]

Hi everyone

I have had an inhaled drug called Pulmozone - or something like that - but it not an antibiotic. I have heard of Colistin before but I haven't ever had it. Drugs often have different names in Aus.

Keep well everyone. Theresa

Subject: Re: inhaled antibiotic, ColistinTo: bronchiectasis Received: Wednesday, 28 September, 2011, 9:36 PM

To: bronchiectasis Sent: Wed, September 28, 2011 7:47:33 PMSubject: Re: inhaled antibiotic, Colistin

Hi Norma,It is so awful to be so unwell. Please don't ever think it's because you're doing / not doing something that is the cause. It really is the "nature of the beast" ... sadly...The only med I know of we're given in Aus is Timentin IV, and Tobramycin nebs. I think Theresa may have had something else but can't remember what now. However, Aus is behind the rest of the world, and the State I live in is another 2 decades further behind!!I do hope you're able to get on top of the infx soon, and able to have plenty of rest...hugsjoy

Hi Joy,

Thanks for your encouragement. I am trying to get more rest. It was difficult on me having to go back into the hospital a second time 10 days later.

Norma