Re: Psuedomonas & Tobi Nebulizer Antibiotics

[Guest guest]

The diagnoses and living circumstances under Medicare Part D covers tobramycin

is indeed limited. Medicare Part B is backup for this particular drug, but I

suspect only in the hospital. I recommend having your prescribing doctor and

pharmacist file appeal with your Part D provider AND contact the staffer at your

Congressperson's office who deals with Medicare issues. When my Congressperson

Barbara Lee gets involved, things turn around quickly.

Good luck!

Alana

>

> Please advise

>

> I have a psuedomonas infection in both lungs and the only med that killed my

lung culture Medicare refuses to pay

>

> Tobi has no generic and is $5,000 +

>

> Anyone dealt with this before?

>

[Guest guest]

My last 'expidighted' appeal was submited Sept 9th and still in progress

I can't wait months to appeal antibiotic Tobi [a nebulizer med NOT tobramycin

which is IV administered]

I'm workin on the congressperson angle as we speak tho

> >

> > Please advise

> >

> > I have a psuedomonas infection in both lungs and the only med that killed my

lung culture Medicare refuses to pay

> >

> > Tobi has no generic and is $5,000 +

> >

> > Anyone dealt with this before?

> >

>

[Guest guest]

Ah, yes. I was reading the Tobi neb regulations when I responded to you.

They're related drugs. Ironic how it's easier to get the IV. Why can't they

just trust and honor our doctors orders?! Good luck with the congressperson.

>

>

> My last 'expidighted' appeal was submited Sept 9th and still in progress

>

> I can't wait months to appeal antibiotic Tobi [a nebulizer med NOT tobramycin

which is IV administered]

>

> I'm workin on the congressperson angle as we speak tho

>

>

[Guest guest]

My psuedomonas infections clear with Cipro 500mg twice a day for 10 days. No

luck with this?

Lori

________________________________

From: charmedcripchic <charmedcripchic@...>

Sent: Sun, January 16, 2011 6:51:16 PM

Subject: Psuedomonas & Tobi Nebulizer Antibiotics

Please advise

I have a psuedomonas infection in both lungs and the only med that killed my

lung culture Medicare refuses to pay

Tobi has no generic and is $5,000 +

Anyone dealt with this before?

[Guest guest]

Did you file an appeal? I'm doing one for the rx I mentioned on the IL

group. They would cover mine if I had CF.

Take Care,

Kimi

Need birthday cards and more?

Visit my Etsy site: _www.craftykfox.etsy.com_ (www.craftykfox.etsy.com)

In a message dated 1/16/2011 7:51:29 P.M. Eastern Standard Time,

charmedcripchic@... writes:

Please advise

I have a Psuedomonas nfection in both lungs and the only med that killed

my lung culture Medicare refuses to pay

Tobi has no generic and is $5,000 +

Anyone dealt with this before?

[Guest guest]

I meant to add this to my last email.....I too found out I have

Psuedomonas, but the type that is colonized. I had done some online reading on

it

and remembered that Gentamicin could be used. Is this an option?

Take Care,

Kimi

Need birthday cards and more?

Visit my Etsy site: _www.craftykfox.etsy.com_ (www.craftykfox.etsy.com)

In a message dated 1/16/2011 7:51:29 P.M. Eastern Standard Time,

charmedcripchic@... writes:

Please advise

I have a psuedomonas infection in both lungs and the only med that killed

my lung culture Medicare refuses to pay

Tobi has no generic and is $5,000 +

Anyone dealt with this before?

[Guest guest]

Nope- Cipro isn't working

>

> My psuedomonas infections clear with Cipro 500mg twice a day for 10 days. No

> luck with this?

>

> Lori

>

>

>

>

>

>

> ________________________________

> From: charmedcripchic <charmedcripchic@...>

>

> Sent: Sun, January 16, 2011 6:51:16 PM

> Subject: Psuedomonas & Tobi Nebulizer Antibiotics

>

>

> Please advise

>

> I have a psuedomonas infection in both lungs and the only med that killed my

> lung culture Medicare refuses to pay

>

> Tobi has no generic and is $5,000 +

>

> Anyone dealt with this before?

>

>

>

>

>

>

>

>

[Guest guest]

Thank you Kimi [hugs and appreciation] I'm going to ask my dr about that med

>

> I meant to add this to my last email.....I too found out I have

> Psuedomonas, but the type that is colonized. I had done some online reading

on it

> and remembered that Gentamicin could be used. Is this an option?

>

> Take Care,

> Kimi

>

> Need birthday cards and more?

> Visit my Etsy site: _www.craftykfox.etsy.com_ (www.craftykfox.etsy.com)

>

>

> In a message dated 1/16/2011 7:51:29 P.M. Eastern Standard Time,

> charmedcripchic@... writes:

>

>

>

>

> Please advise

>

> I have a psuedomonas infection in both lungs and the only med that killed

> my lung culture Medicare refuses to pay

>

> Tobi has no generic and is $5,000 +

>

> Anyone dealt with this before?

>

>

>

>

>

>

[Guest guest]

Oh, sorry. That is too bad. I am lucky it still works for me after all these

years. Hope you feel better soon!!

Lori

________________________________

From: charmedcripchic <charmedcripchic@...>

Sent: Mon, January 17, 2011 4:51:30 PM

Subject: Re: Psuedomonas & Tobi Nebulizer Antibiotics

Nope- Cipro isn't working

>

> My psuedomonas infections clear with Cipro 500mg twice a day for 10 days. No

> luck with this?

>

> Lori

>

>

>

>

>

>

> ________________________________

> From: charmedcripchic <charmedcripchic@...>

>

> Sent: Sun, January 16, 2011 6:51:16 PM

> Subject: Psuedomonas & Tobi Nebulizer Antibiotics

>

>

> Please advise

>

> I have a psuedomonas infection in both lungs and the only med that killed my

> lung culture Medicare refuses to pay

>

> Tobi has no generic and is $5,000 +

>

> Anyone dealt with this before?

>

>

>

>

>

>

>

>

[Guest guest]

Good idea, Kimi. My doc mixed gent with cephtazadime when I had stubborn

pseudomonas, though, my infection was in my urinary tracted. Good luck,

charmed.

>

>

> Thank you Kimi [hugs and appreciation] I'm going to ask my dr about that med

>

[Guest guest]

My dr is sick of paperwork and won't support my appeal

The FDA only approved Tobi for CF and by law off label prescriptions can be

denied coverage by Medicare

My last expidighted appeal was submitted Sept 9 and still pending

At this point I'm about to say bleep-it and just let myself go to hospice

I'm tired of all of the medical coverage crap, being sick, in pain, with no

help. I spend days on end being punted around the system, making calls and

emails that never get returned, filing appeals and then my drs can't be bothered

to vouch for me.

This is how folks give up.

>

> Did you file an appeal? I'm doing one for the rx I mentioned on the IL

> group. They would cover mine if I had CF.

>

> Take Care,

> Kimi

>

> Need birthday cards and more?

> Visit my Etsy site: _www.craftykfox.etsy.com_ (www.craftykfox.etsy.com)

>

>

> In a message dated 1/16/2011 7:51:29 P.M. Eastern Standard Time,

> charmedcripchic@... writes:

>

>

>

>

> Please advise

>

> I have a Psuedomonas nfection in both lungs and the only med that killed

> my lung culture Medicare refuses to pay

>

> Tobi has no generic and is $5,000 +

>

> Anyone dealt with this before?

>

>

>

>

>

>