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Those who use colistin?

A

anonymous

New member
I know I brought this up a couple times, but still no luck as yet on getting the insurance company to cover it.

My insurance company (Southern Health) says its an experimental drug when inhaled? The say FDA has not approved for inhalation in cf. I'm appealing and sending some info I found on the net about its use in cf.

Anyone have any other suggestions? Can you recommend any good websites that promote the use of colistin in cf? I've found several.

John 26 w/cf
 
A

anonymous

New member
I know I brought this up a couple times, but still no luck as yet on getting the insurance company to cover it.

My insurance company (Southern Health) says its an experimental drug when inhaled? The say FDA has not approved for inhalation in cf. I'm appealing and sending some info I found on the net about its use in cf.

Anyone have any other suggestions? Can you recommend any good websites that promote the use of colistin in cf? I've found several.

John 26 w/cf
 
A

anonymous

New member
I know I brought this up a couple times, but still no luck as yet on getting the insurance company to cover it.

My insurance company (Southern Health) says its an experimental drug when inhaled? The say FDA has not approved for inhalation in cf. I'm appealing and sending some info I found on the net about its use in cf.

Anyone have any other suggestions? Can you recommend any good websites that promote the use of colistin in cf? I've found several.

John 26 w/cf
 
T

tonrsoul82

New member
Wow never had this problem with any of my inhaled neb treatments.
 The only problem I have had with social security is since I
went to Part D with all their new bull crap is they don't want to
cover my neb medicine BECAUSE I don't live in a group home, or rest
home type enviorment.  But I finally got them to approve my
neb treatments for a year at a time.  Good god their is no way
I could afford to pay for the neb treatments lol.  Xopenex =
400$ a month.  Tobi= about 1,000$ per month..  Pulmazyne
about 1000$ a month.. and I sure colestein is somewhere in that
area.  I love my pharmacist (well not really) cause he did
most all the work to get social security to approve it.
 
T

tonrsoul82

New member
Wow never had this problem with any of my inhaled neb treatments.
 The only problem I have had with social security is since I
went to Part D with all their new bull crap is they don't want to
cover my neb medicine BECAUSE I don't live in a group home, or rest
home type enviorment.  But I finally got them to approve my
neb treatments for a year at a time.  Good god their is no way
I could afford to pay for the neb treatments lol.  Xopenex =
400$ a month.  Tobi= about 1,000$ per month..  Pulmazyne
about 1000$ a month.. and I sure colestein is somewhere in that
area.  I love my pharmacist (well not really) cause he did
most all the work to get social security to approve it.
 
T

tonrsoul82

New member
Wow never had this problem with any of my inhaled neb treatments.
 The only problem I have had with social security is since I
went to Part D with all their new bull crap is they don't want to
cover my neb medicine BECAUSE I don't live in a group home, or rest
home type enviorment.  But I finally got them to approve my
neb treatments for a year at a time.  Good god their is no way
I could afford to pay for the neb treatments lol.  Xopenex =
400$ a month.  Tobi= about 1,000$ per month..  Pulmazyne
about 1000$ a month.. and I sure colestein is somewhere in that
area.  I love my pharmacist (well not really) cause he did
most all the work to get social security to approve it.
 
J

julie

New member
John, we have BOXES of colistin that my Dh will never use, and if he needs it again we can get an RX. Are you interested? I know this won't solve the ins. problem but it can get you by in the meantime....

Email me if you are interested.
 
J

julie

New member
John, we have BOXES of colistin that my Dh will never use, and if he needs it again we can get an RX. Are you interested? I know this won't solve the ins. problem but it can get you by in the meantime....

Email me if you are interested.
 
J

julie

New member
John, we have BOXES of colistin that my Dh will never use, and if he needs it again we can get an RX. Are you interested? I know this won't solve the ins. problem but it can get you by in the meantime....

Email me if you are interested.
 
L

Liza

New member
Hi, we've never had a problem with colisting either. I believe we too have some left over. I will double check the exp. dates and post back. I too offer to send them if you can use them. If they put her back on it we can get a new script as well.

Liza
(mom of 2teen girls w/CF)
 
L

Liza

New member
Hi, we've never had a problem with colisting either. I believe we too have some left over. I will double check the exp. dates and post back. I too offer to send them if you can use them. If they put her back on it we can get a new script as well.

Liza
(mom of 2teen girls w/CF)
 
L

Liza

New member
Hi, we've never had a problem with colisting either. I believe we too have some left over. I will double check the exp. dates and post back. I too offer to send them if you can use them. If they put her back on it we can get a new script as well.

Liza
(mom of 2teen girls w/CF)
 
K

Kimmiek

New member
ditto. I too have collistin..Just got it a couple of months ago...I have the syringes, sterile water and collistin. As long as it's the same (my assumption would be yes). If you need it until you can get approved. PM me and I can send you some.

Also, you can contact your local CF foundation. They provided it to Mike free of charge before he had insurance as well.
 
K

Kimmiek

New member
ditto. I too have collistin..Just got it a couple of months ago...I have the syringes, sterile water and collistin. As long as it's the same (my assumption would be yes). If you need it until you can get approved. PM me and I can send you some.

Also, you can contact your local CF foundation. They provided it to Mike free of charge before he had insurance as well.
 
K

Kimmiek

New member
ditto. I too have collistin..Just got it a couple of months ago...I have the syringes, sterile water and collistin. As long as it's the same (my assumption would be yes). If you need it until you can get approved. PM me and I can send you some.

Also, you can contact your local CF foundation. They provided it to Mike free of charge before he had insurance as well.
 
A

anonymous

New member
I really appreciate the offers. Right now I have a bad cold and am going to the doctor tomorrow. I'm still working on the insurance company, but currently I'm back to inhaling gentamicin. (can't take the tobi)

I will post again if I can use it.

John
 
A

anonymous

New member
I really appreciate the offers. Right now I have a bad cold and am going to the doctor tomorrow. I'm still working on the insurance company, but currently I'm back to inhaling gentamicin. (can't take the tobi)

I will post again if I can use it.

John
 
A

anonymous

New member
I really appreciate the offers. Right now I have a bad cold and am going to the doctor tomorrow. I'm still working on the insurance company, but currently I'm back to inhaling gentamicin. (can't take the tobi)

I will post again if I can use it.

John
 
K

Kimmiek

New member
John..
I do hope you are feeling better. Please remember, listen to your CF docs. If they prescribe it, it's for a reason.
Don't let the insurance company dictate whether or not you get the medications you need to insure good health. CF is tough enough to deal with without having to fight insurance companies, etc. Oh, and believe me, I have fought LOTS for Mike!

If you don't feel comfortable taking the medication from one of us (I understand). Then please call the CF Foundation Pharmacy. They have been ALOT of help to Mike in the past. Providing lots of medication over the years either when Mike did not have insurance, or for something the insurance company did not cover.

My family, friends and co-workers now donate to the CF Foundation. I am even considering setting up something where a portion of the income from my company goes directly to them. This is the exact reason why I am doing it. Not only to find a cure and research, but to hopefully make someone with CF's life a little easier. I know the battles I have fought in my lifetime for my bro, and what he would feel like when he was sick.

If you need info on how to do this, let me know and I will be happy to help.

Take care of yourself, and best of luck to you John!
 
K

Kimmiek

New member
John..
I do hope you are feeling better. Please remember, listen to your CF docs. If they prescribe it, it's for a reason.
Don't let the insurance company dictate whether or not you get the medications you need to insure good health. CF is tough enough to deal with without having to fight insurance companies, etc. Oh, and believe me, I have fought LOTS for Mike!

If you don't feel comfortable taking the medication from one of us (I understand). Then please call the CF Foundation Pharmacy. They have been ALOT of help to Mike in the past. Providing lots of medication over the years either when Mike did not have insurance, or for something the insurance company did not cover.

My family, friends and co-workers now donate to the CF Foundation. I am even considering setting up something where a portion of the income from my company goes directly to them. This is the exact reason why I am doing it. Not only to find a cure and research, but to hopefully make someone with CF's life a little easier. I know the battles I have fought in my lifetime for my bro, and what he would feel like when he was sick.

If you need info on how to do this, let me know and I will be happy to help.

Take care of yourself, and best of luck to you John!
 
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