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anonymous
06-11-2006, 08:24 PM
I have cultured pseudomonas for the last two years. I am 19 and I have been hitting antibiotics hard and am at the point of just maintaining rather than trying to erradicate. I am wondering how often others take antibiotics for pseudo. What is treatment regimen? And what do you take as far as inhaled/oral meds. Right now I am just getting started with Zithromax 3x a week. I need to make a decision on how often I should use antibiotics. Options given to me are just wait until I dont feel well or inhaled Colistin every other month or inhaled Colistin every 3 or 4 months. Or Cipro for a month at a time every 3 or 4 months. It concerns me to do a whole month at a time with the Cipro does anyone else use it for less than a month at a time?

coltsfan715
06-11-2006, 08:55 PM
I have cultured Psuedo since I was little and have only had one culture (about a yr ago) that came back without Psuedo, but it has reappeared after about 2-3 months.

When I was younger they had me on a regimen of 1 month on TOBI and 1 month on Cipro. Then I became resistant to Cipro after a short while. Then I was switched to 1 month on TOBI 1 month on Levaquin. That worked for a short while then I had a reaction to the levaquin (still unsure why). After that I was swiithed to 1 month TOBI 1 month Bactrim. I took thar for a while as well. I started having problem with TOBI and they took me off of it.
For me I was never put on Colistin because the bugs I grow have always been resistant to it. Now I take Zithromax every other day (3x a week whichever), but other than that I only take antibiotics when I am sick. For me it works well because my body does not get resistant to drugs as easily that way. For each person it works differently. If you feel better taking something to treat it all the time then go for it. If you would rather not worry about all the meds all the time and just take them when you are sick I would say that would be fine too.

I would just talk to your doc about your concerns either way. They should talk to you. I think alot of times it just takes asking questions and showing an interest. I do not know the advantages to treating the Psuedo all the time vs only when you have a flare up. I will say I get sick a little more frequently now that I am not treating it all the time, but at the same time it may just be natural CF progression that is the problem with me. I used to go in the hospital once a yr with treatment all the time. Since that has stopped I have been in the hospital on average about once every 9-11 months or so. This last time was only 5 months difference, but that happens sometimes.

Hope you decide what to do and that someone who has been on Colistin can offer their opinion.

Lindsey

thelizardqueen
06-11-2006, 09:23 PM
I have cultured Pseudo since I was 14. Up until I was 20 I treated it when I had a flairup. Now I take preventative measures. I do TOBI one month on, one month off. I also take Zithromax 3x a week. I've been on Colistin a couple of times, but I don't tolerate it well, so I stick with TOBI because it does the trick. When I do have an active flairup, I still take the TOBI along with high doses of Cipro for 3 weeks.

NoExcuses
06-11-2006, 11:05 PM
I cultured pseudo when i was about 2. I would do nebulized Tobramycin (before TOBI came out) for 2 weeks when I got sick. I wasn't on Cipro until when I was older because I think it didn't come to the market until early 90s if I remember correctly.

Then I got older and I was on Cipro (2 weeks, 750mg TID) for flair-ups sometimes and Tobra sometimes.

I took IV Tobra when I was 9 for an allergy-related flair-up and Tobra again when i was 16, 20, 23 and 24.

They put me on TOBI 28 days on, 28 days off when i was 18 (1999) because flair-ups were becomming more common and they thought I needed an antibiotic more often. Worked pretty well.

This time last year my FEV1's kept dropping (from 99% to high 70s). As you saw above I was hospitalized twice in one year (June 2004, September 2004). I bouced back both times to an FEV1 of 98% or higher.

The following winter was rough - I was on Cipro for 2 seperate flair-ups again, related to colds that I got.

February 2006 my docs thought that the TOBI was useless - I was resis to Tobramycin in my sensitivity culures (which may or may not translated into resist with neb TOBI) so they took me off. Doc said that he would put me on Hypertonic Salene in hopes that I would cough up enough phlem to avoid a PA flair-up.

Here we are a few months later and it looks like the HTS did the trick. If I get sick again, I'll probably be put on Collisin 28 days on 28 days off.

Other than that I've been trying to eat more asparagus, broccoli and blueberries because they can increase glutathione production in the body. Glutathione has been show in some studies to prevent PA growth.

Hope this helps.

wuffles
06-11-2006, 11:08 PM
I only treat mine when I get a flare-up. That is the easiest way for me, and it seems to work ok so far. Oral Cipro still works for me, so I take either that or inhaled tobramycin for 2 weeks for flare-ups.. which is usually about twice a year.

However, I think it comes down to what works for you.

julie
06-11-2006, 11:42 PM
Out of curiosity, is there a reason why they are bypassing Tobi and putting you straight onto colistin?

Mark has only used Colistin once for flare ups but it was because he wasn't responding to tobi. We were warned of some nasty side affects from nebulized colistin. Luckly he didn't experience any and the colistin worked for that infection, but after that he was back to the Tobi.

NoExcuses
06-12-2006, 12:07 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>julie</b></i>

Out of curiosity, is there a reason why they are bypassing Tobi and putting you straight onto colistin?



Mark has only used Colistin once for flare ups but it was because he wasn't responding to tobi. We were warned of some nasty side affects from nebulized colistin. Luckly he didn't experience any and the colistin worked for that infection, but after that he was back to the Tobi.</end quote></div>

My guess this this someone from a non-US country. Other countries who have socalized medicine use Collistin or Tobramycin 1st before TOBI because TOBI costs so much more.

NoExcuses
06-12-2006, 12:08 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

I have cultured pseudomonas for the last two years. I am 19 and I have been hitting antibiotics hard and am at the point of just maintaining rather than trying to erradicate. I am wondering how often others take antibiotics for pseudo. What is treatment regimen? And what do you take as far as inhaled/oral meds. Right now I am just getting started with Zithromax 3x a week. I need to make a decision on how often I should use antibiotics. Options given to me are just wait until I dont feel well or inhaled Colistin every other month or inhaled Colistin every 3 or 4 months. Or Cipro for a month at a time every 3 or 4 months. It concerns me to do a whole month at a time with the Cipro does anyone else use it for less than a month at a time?</end quote></div>

I forgot to answer your Cipro question. i've never done it for more than 2 weeks at a time.

anonymous
06-12-2006, 12:10 AM
This is the original poster-- I appreciate all of your shared experiences and your advice as well. I have never had a flare up and have never really been sick however a culture started showing light growth pseudo. and at that point I was prescribed inhaled Tobi and oral Cipro however due to the terrible side effects I could not continue the full course of treatment with the Tobi and to make a long story short over the past two years since this started I have been on ALOT of antibiotics and even a 2 week course of IV Tobi and Merempium and then my cultures were negative for 6 months. I also had a bronc just prior to the IV meds and it did not culture pseudo. but my doc recommended the 2 week course of IVs anyway. But at this point with it continuing to show up I am needing to decide from here what to do - continue with long treatments of antibiotics or just wait and see how things go for awhile or take antibiotics for short burst on occasion. I want to be conservative but yet do what is neccesary.

catboogie
06-12-2006, 05:13 PM
anonymous,

i have cultured pseudomonus since i can remember (i'm 27 now). i never even thought about getting rid of it. i force myself to exercise 4-5 days a week, and this, as well as being on the hypertonic saline, has REALLY kept my infections down. i just hate seeing people getting caught up in antibiotics, feeling like there is no other option. anyway, exercise and a healthy lifestyle can really keep your bugs in check. good luck!

laura