New member - older CF'er - couple of antibiotic questions

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stevehof

New member
Hi All,

I'm 57 and living in sunny southern California. My health care is in the hands of an HMO, Kaiser Permanente. I have been quite happy with Kaiser. You do have to be a little aggressive now and then but they seem to have decent protocols. The one area that they may be lacking is cutting edge technology concerning CF. The pulmonary doctor I see is not a CF specialist.

I have been taking Septra DS and Ceclor for about 15 years. I do inhaled Tobi once or twice a year when my infections need to be beat down some. I don't use it month on/month off as it was designed to be used because it irritates my lungs and I do lot of extra wheezing during the treatment duration. It is not a very comfortable regimen for me. So far, Ive been able to avoid regular use of IV antibiotics unless I get a cold or flu&

So, are there any other new ORAL antibiotic maintenance therapies available that are approved and in use by accredited CF centers? Septra and Ceclor have been around forever....:^)

Cheers, Steve
 
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anonymous

New member
Hi my name is haley 18 with CF and CFRD

I'm glad to hear that your health has been relativly stable for so long!!

At my CF center, they often perscribe Zythromax to the patients. I'm taking 500mg every other day. The purpose of this thearpy is not for its antibiotic proporties, but rather that it acts as an antinflamatory. I know many CFers take ibuprofin for this same reason, but my docotrs say that the Zythromax works GREAT in some patients and doesn't really do anything for others. So it couldn't hurt to ask your doc about it.
 
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stevehof

New member
Hi Haley,

Thanks for the information! I'll ask my Doc about Zythromax. That sounds promising because reactive airway and inflamation have become more of an issue for me lately...

Steve
 
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HollyCatheryn

New member
I've done some other things (non-antibiotic) that have really helped in my maintenance. My need for antibiotics, both oral and IV has been steadily decreasing for the last 4 years. I'd be happy to detail some of these things. I've tried to avoid the use of antibiotics as much as possible, even for maintenance, because they seem to cause as many problems as they cure - for me. There are lots of options that are very successful for people with CF.
 
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anonymous

New member
Welcome!
57 is great! I'm assuming your doctor has you do breathing tests periodically to check your lung capacity? If so, if you'd want to share, do you happen to know what your FEV1 percentage is? I'm just curious, I guess.
Does your HMO not cover the CF Clinic/doctor?
In answer to your question, sometimes erythromycin, which is similiar to Zithromax from my understanding, (but cheaper), can also help w/ maintenance. It is an "older" drug, but this is something you may want to ask your doctor about.
Elle
 
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cfNana

New member
I use Ciprofloxacin (cipro), Biaxin, Augmentin, Bactrim, Levaquin, and Dicloxacillin when I need orals. Most of the time It's Cipro, levaquin, and Bactrim. The rest of the time I'm on Iv's. If the ones you are on work thats great. If not you have a lot of choices. --I'm 46 with CF, it's good to hear from other older cfrs.. By the way are you on Dornase???--- Nana
 
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stevehof

New member
Reply to anonymous...I think my FEV1 was around 60% two years ago when I last tested. Coincidentally, I'm going in for PFT's on Wednesday.

Reply to cfNana...I tried Dornase a few years ago and I didn't think it made any positive difference in my health....

Thanks to everyone for the insights and suggestions. It looks like Zythromax and Advair would be a good combo to lobby my doctor to try for a while...
 
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anonymous

New member
Hi Steve,

Good luck with the Zithromax. I was on it for three months without any major improvements. My doctor has now removed it from my daily treatment plan, but has introduced Pulmozyme.

A prior poster stated that the Zithromax may help for some and not for others. Hope it works for you.

When I read your post that you were 57 I was so amazed. It really gives me some hope.

Dxat35.
 
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anonymous

New member
Ditto Zithromax..our center uses it and believes in it..DNASE many who use it do not realize how much it does help until they try and stop it...same with zithromax....
RN CF Coordinator
 
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anonymous

New member
Excuse my ignorance here, but are DNASE and Pulmozyme the same thing?<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
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