Treatments around the world

[anonymous]

Hi everyone,

I was just wondering if CF treatments around the world are more or less the same. I live in Canada. My lungs are the organs most affected by CF. Here is a list of medications/treatments that I take/do to maintain my lungs.

1) Flovent
2) Oxeze
3) Ventolin (when needed)
4) Pulmozyme or Hypertonic Saline
5) Tobramycin (inhaled - 28 days on/off)
6) Ibuprofin
7) Nasonex (to avoid a sinus drip)
8) Chest Therapy - Acapella

I was taken off Zithromax.

I am interested in knowing if there are other medications/treatments (lung related) that are being used around the world that I should be considering.

Dx@35.

 

[miesl]

Treatments also seem to vary from doctor to doctor and clinic to clinic.

This is Jeremy's list of lung-related meds (U of Minnesota clinic)

-Mucomyst (acetylcysteine) (neb) (2x day)
-Albuterol (neb) (2x day)
-Atrovent (neb) (2x day)
-Hypertonic saline 5% 5 ml (neb) (2x day)
-Vest (2x day)
-Zithromax 250 (1x day)
-Advair 500/50 (2x day)
-Beconase AQ (in theory 2x day, 2x per nostril) (in practice - not nearly that often, he hates having it run down his throat)
-Colymycin (one month at 2x day, when needed for rampant PA infection)

Also,
-Ginger (~1000 mg 2x day) as a natural anti-inflammatory. The doc gave his blessing, and Jeremy's pfts have been stable (or improving) since going on it. However, we've also been exercising more - so we can't pinpoint it to the ginger.

Michelle

 

[anonymous]

Hi Michelle,

Thank you for your response.

I have never heard of Mucomyst, Colymycin and Atrovent.

I am assuming that Mucomyst and Colymycin is a form of antibiotic. Is it to prevent Staff and Pseudomonas?

What purpose does Atrovent serve?

Dx@35.

 

[miesl]

Mucomyst is a mucolytic agent - the dose he uses is 2 ml of 10% solution.

Colymycin - colistmethate is an antibiotic. In this case, it's for psuedomonas, I don't know if it's used for any other bugs.

Atrovent (ipratropium bromide) - is a bronchodilator.

-Michelle

 

[anonymous]

I am from Austria- Europe.
* Pulmozyme twice a day
*some kind of exercise- either cycling, swimming, walking etc.
* breathing therapy once a day with the pep mask
*colistin twice a day
*pulmicort ( a spray)

I don`t swallow any antibiotics cause since I have started pulmozyme and since i am doing the colistin really carefully that`s not necessary anymore...

hope that could help! greetings!
Lisa, 20, CF

 

[anonymous]

My b/f takes:

1. Zithromax - 3 x a week (M,W,F)
2. Pulmozyme - 2 x a day
3. Tobi - supposed to be every other month, but he generally just uses it for a month when he feels junky - twice a day
4. Vitamins - ADEK every day
5. Enzymes
6. Vest - 2 x a day
7. albuterol MDI - 2 puffs before each vest/Pulmozyme treatment (twice a day) - so the lungs can open up for the Pulmozyme/Tobi to penetrate deeper (similar to Oxeze), plus if he needs it for trouble breathing

I think that's it - plus cyclosporine for his liver transplant & Lantus/Humalog for diabetes. He's bad about his ADEK. <img src="i/expressions/face-icon-small-sad.gif" border="0">

It also depends on the severity of your lung involvement and what type of microorganisms are being cultured from your sputum when it comes to medication... Mostly it sounds like the type of drugs you are using are similar to other places, although the brand names might be different.

~L~