Effectiveness of inhaled antibiotics after months of use?

[stevehof]

I have had very little actual sustained clinical improvement from using either inhaled Cayston or Colistin. Plus my lungs are reactive and both these meds make me wheeze a bit. After several months usage, there seems to be even less positive result. I don't see any reduction in sputum production, color or anything else that would indicate these meds are actually reducing infection.

Since I am on Medicare, Cayston now comes with a $2000 co-pay so it's an easy decision to drop it. Kaiser rates Colistin as an IV drug so it's still free. However, again, the benefits from inhaled Colistin just don't seem to be there either.


Anyone else out there give up on inhaled antibiotics due to either reactive lungs or failure to produce any noticeable clinical improvement?

 

[stephen]

stevehof;

I’m on Medicare too. My drug plan is now an “enhanced Medicare” drug plan, so I know what you’re talking about as far as the co-payments go.

I’ve been on Cayston for over six years. (It was free before getting FDA approval.) My feeling is that it definitely helps.

Before being diagnosed with CF in 2005, I use to bleed about 10 times a year. Since the diagnosis, the bleeding has stopped thank G-d. I credit this to the inhaled antibiotics!

The only real difference between pre 2005 and now is the use of Pulmozyme, Hypertonic Saline, and inhaled antibiotics (TOBI, Colistin, Podhaler, and Cayston). I had problems tolerating all but the Cayston.

Thankfully my maximum out of pocket drug expenses is supposed to be capped after passing through the “donut hole”, which I believe is about $4,750 this year. My plan is supposed to pick up the 5% co-pays after I actually shell out the $4750. Last year my costs exceeded the limit by only $75 and I’m currently waiting to get the reimbursement.

Thankfully, while the $4,750 drug bill hurts, it does not change my life style. A factor in my working until almost 70 was to keep the great employer sponsored drug plan I had.

If you possibly can, you should continue whatever drugs your doctors prescribe. The $2000 co-payment will probably drop down to about $280 (5% of the drug’s cost) for your next delivery since you are probably through the donut hole for 2014. There is also assistance available to help with drug co-payments.

 

[stevehof]

Stephen,

Thanks for the reply and suggestions. I would have no issue with burning through $5k to clear my doughnut hole, if I thought the meds were helping. Obviously, you believe Cayston is helping you. I'm sure it helps a lot of folks. I'm looking to see if there are others who not only believe that inhaled antibiotics don't help but may in fact be counter productive due to reactive airway issues. If my small airways become chronically irritated/constricted after a week's worth of antibiotic inhalation, the meds may not be effectively getting town to the pockets of infection. I sure don't see any difference in sputum production. Again, all I seem to get is shorter of breath the further into the 3 week period of therapy I go. I do use Advair to help counter the irritation but that doesn't seem to be enough and my doc doesn't want to prescribe larger doses of prednisone. He believes the immunosuppressive component of pred is not worth the risk. Also, I am borderline CFRD.

 

[stephen]

stevehof;

I do know how you feel. I'm not sure if the Pulmozyme does me any good, but there are no negative side effects, and it's fully covered by Medicare and my supplemental coverage as a Part B drug.

I feel that the Cayston has "controlled" my lung infections because there is nothing else I'm taking or doing to explain the past good six years. Also, the Cayston has no detectable adverse side effects.

Could be that Cayston is loosing its affectivity on me. I'm currently waitng to give TOBI another try, hoping it doesn't do a job on my hearing. I also spoken to my doctor about getting a PICC line and starting IV next week - but no Tobramycin!

 

[viviansuthers]

When it comes to antibiotics, not only humans have been using it. I read from an article that many farmers have made it common practice to give animals antibiotics to ensure they are healthy, even if the animal would not normally be healthy. The FDA, however, will be limiting some of this practice in an effort to keep human antibiotic resistance from growing. If you want more of this info,. you can go here.

 

[Emer76]

I understand how you feel. I went for a lot of years without any inhaled antibiotics because my lungs are so reactive. I eventually had to stop pulmozyme because of coughing up blood. So I went for a while with just albuterol and wondering if there would ever be anything I could take because I was getting resistant to orals. I tried to take Tobi and colistin off and on for years but I just couldn't tolerate them. I took colistin along with hypertonic saline during one admission years ago and got extremely sick. I was only there for a tune up . My numbers were not that bad but plummeted on those drugs. My doctor did apologize for that. Now they listen to me when I tell them I have reactive airways. l eventually took hypersonic by itself later on and did okay. I still take it and cayston has been the only inhaled antibiotic I can tolerate . Cayston has made a difference for me. I know how frustrating it is to take a drug that is suppose to help but doesn't or worse harms you. And our drugs are not cheap! Good luck to you.

 

[windex125]

I also found no improvement with Cayston only used it 2x last year, Someone above posted abt Tobi and hearing watch that very carefully, that is why I now have 2 hearing aids. I must say that Pulmozyme has been my liquid gold, it has changed my life for yrs. no more plugs, stuff flows out like velvet. I actually know when I am having a infection when the taste and color change. But I am on a oral 365 days a year we change it around every 6mts or so. I also stop the Pulmoyzme if I have bleeding. I had a double port put in 2001 as my picc lines were not holding up well and I wld start running fevers. I have not had to use them for 5yrs now pretty strange considering I only have one functioning lung at this time. The other has been collapsed for years. I think a lot has to do with me living in denial more or less. I do my treatments, take my meds try to get some walking in when the weather is good. But I just do not think abt CF everyday.I also have days where I cough for 3hrs straight like hacking seal no sputum... then I realize I can't hide everyday. Wish you all well Pat-CF/59

 

[nmw0615]

Have you tried inhaled albuterol (as in through a neb, not a little puffer/aero chamber) or a similar med? I have reactive airways, but if I do inhaled albuterol about 15 minutes beforehand, I'm fine.

 

[stevehof]

Have you tried inhaled albuterol (as in through a neb, not a little puffer/aero chamber) or a similar med? I have reactive airways, but if I do inhaled albuterol about 15 minutes beforehand, I'm fine.

No, I haven't tried liquid albuterol in saline. I do take a couple of puffs on my inhaler before each inhaled antibiotic treatment and another puff afterwards. I doubt changing to liquid albuterol would help much. My lungs get so irritated by the inhaled antibiotics after a few days use that I am tight and slightly wheezy most all day long. That, of course, makes me more dependent on my puffer for the rest of the day and evening.

 

[nmw0615]

I've found the neb albuterol is much more effective than the puffer. On the antibiotics without it, I would struggle to breathe after only a couple inhalations. As soon as I switched over, I could go the entire treatment without a problem and after the treatment, there were no residual effects.

If anything, it can't hurt to ask about and possibly try.

 

[kgfrompa]

I can not take Tobi I had taken it for four years on a month and off a month,Until I was in a research study and the Dr Orenstein said each month I am on Tobi My wheezing is so much worse so I told my CF doctor and he watched me when i was on Tobi and sure enough I had a allergy to Tobi and would of never done any thing any different had Dr O would of not made me aware of how i was feeling now I am not saying you should not take any of this to heart I know for a fact that Cayston and Colisten are a life saver and work so welll I need them and feel better for them both But I no longer Wheeze with Colistin or Cayston and they clear out my lungs so I keep the junk from making me sicker.I wish you could find a Co pay that would help you easy the payment.Thank you