does anyone else feel that zithromax doesn't do much?

anonymous

New member
I have been on zithromax for almost 3 years now i think. I just havent even felt like it does ANYTHING. i mean my health has not improved over these years, if anything its gotten worse. I do not fault zithromax for that but it just doesnt seem like it is helping.

my doctors all seem to be enamored with it. i just dont see why, especially since i havent heard others rave about it....
if you are out there though, and you love it, i'd liek to know! or if you feel the way i do i'd like to know too...

caitlin
 

Mockingbird

New member
Yeah, I felt the same thing, so i stopped taking. My doctor explained to me, though, that I'm really not supposed to notice a difference. He explained to me exactly what it does, prevent inflammation of lungs or something and that it would be making me healthier in the long run and probably adding years to my life. The way he said it was a lot better, though, so I was almost convinced to start agian, but really my bills are high enough as it is and I'm just tired of paying for it. I guess maybe it really would be better for me to start taking it, though. Since so many doctors like it there probably is something to it.
 

Purplelungs

New member
Since you said you havent heard any one say good things about it I will. I am one that has found it helping me. No I didnt notice a difference right away. But it was like it kept the small infections at bay and kept me from having as many small infections grow into a big infection which would have caused ivs. There are alot of factors that has improved my health over the past few years, and one of the factors I attribute to zithromax. Sure its not a cure all, but it just kept small things away so that i could recover from all the big infections. With all the factors in place, zithro, alot less stress, new doctors and a different way of treating me, being happy i went from having to go to the hospital or home ivs at least 5 times a year to twice a year. Zithromax probably hasnt helped the most but just enough. My pfts even went up about 10% the doctors say that zithro has contributed to that. That is also what its supposed to do is beside reduce inflamation, slightly increase lung function or at least keep it from getting worse. Yes it doesnt always work, and it doesnt work for everyone.
Maybe the zithro is acting as a placebo for me, but I really dont think so. Like I said I think its helping with my inflamation and keeping those small bugs at bay.
 

Lilith

New member
Hello, Caitlin.

Yeah, I've been on Zithromax for a while, too. And while I haven't noticed anything significant, I think it is helping my immune system. It used to be that, whenever I got an infection, I would always have to go on IV medication because the oral meds never seemed to have much of an effect. But now I'm finding that the oral antibioticts, like Cipro and such, are having a greater impact on the smaller bugs. I haven't had to go on IV's nearly as often. This is most likely due to the Zithromax.

Don't know if this helps any, but that's my experience with this particular drug.
 

anonymous

New member
Meanwhile... while you are taking zithromax, which is just suppose to reduce inflamation, the antibacterial properties of the drug are destroying all the good and healthy bacteria in you system, which is designed to help you digest and absorbe nutrients, and promote a healthy system.

Obiviously, you should trust your doctor if that is your nature. Myself I am am always scepctical of their actions, as I feel they are just well educated drug dealers with little compassion for much other than playing golf and watching their bank accounts.

I feel, zithromax should be used only in extreme situations, and should be used by patients who are waiting for transplants. For anyone with a FEV1 greater than 40% or 50% you should not be taking any antibiotic for longer than a month, with exception to addressing something like TB. But that is just my opinion.

Zithromax is an accidental drug, it wasn't designed or intended to be used for what its being used for.
 

Purplelungs

New member
As are alot of medications...they were made for one purpose and found to do alot more good for another purpose. Everyone has their own opinions which is wonderful. While I agree that a person shouldnt be on antibotics for too long because you can become reisistant, I really do think zithromax has helped ME alot. Lilith put it more eliquently than i did, that for ME it has helped my immune system more and helped me to fight off the small bugs that I would wind up on iv therapy for. Which I think is worse than being on zithro....if I was on iv antibotics more often i could be resistant to those meds alot sooner and when I need them the most it wont work. Its one of those things where your darned if you do darned if you dont...Sure i can become resistant to zithromax at some time...but since its not as strong as the iv meds I will need...i think its a trade I am willing to make....you know rather become resistant to a smaller antibotic first than the stronger ones.
 
I

IG

Guest
reminds me of this quote...
Egger: Heres the history of our medicine.
"I have a sore throat."
2000 BC : "eat this root"
1200 AD : "That root is heathen, say this prayer."
1500 AD : "That prayer is superstition, drink this elixir."
1800 AD : "That elixir is snake oil, Take this pill."
1900 AD : "That pill is ineffective, Take this antibiotic."
2000 AD : "That antibiotic is artificial, Here why dont you eat this root."

Anyway I'm with Manda. Zithromax [when I was on it] held the little infections at bay for me. Which prevented the big infections which I'm sure I would have had more of if I wasn't on it. The trade off was worth it for me.
Just like being on vancomycin and losing my hearing.
I'd rather be alive and hard of hearing than dead and not risking it all.

oh yeah the quote is from <a target=new class=ftalternatingbarlinklarge href="http://www.bash.org/">Bash.org</a>
 

Mockingbird

New member
He he, I like that quote a lot, candice. =-) What purple lungs and lilith said is exactly what my doctor said it was supposed to do. =-)

Anonymous, skeptical of doctors? ha ha, get a clue. Or if your doctor makes you feel that way, then get a different doctor. Either way, you're going to actually have to put some trust in your doctor if you want him/her to help you.
 
L

luke

Guest
Caitlin,

Zithromax is not a drug that should make you noticeably "feel good" when you take it like your nebs (or for me Motrin). It may not even be one of those drugs that you may notice a difference when you quit taking it. It is hard for us to tell gauge progress or digression sometimes when the change is so slow and minimal. What I do know is that when I started taking it 3 years ago my FEV1 baseline increased 4-5%. That is a very significant change when with us each % means so much. I think that data suggests a an average of a 5% increase in FEV1 with usage. I would encourage taking the medicine. For us preventive medicine is so very important in our overall prognosis and unless you are having miserable side effects from the drug you might consider just trudging on by taking it.


Luke
 

anonymous

New member
Hi,

Everyone responds differently to different medications. I was on Zithromax for a couple of months and did not notice any major improvements. Even though studies suggest a possible increase in FEV and fewer exacerbations, I was encountering the opposite effect. My doctor and I decided to discontinue the Zithromax and to alter my treatment plan. I am having much better success with Pulmozyme.

Dx@35
 

Purplelungs

New member
I also wanted to say I know of two cfers that were allergic to zithromax so it made them alot worse than doing any tiny bit of good. Its just good to remember like all medication some people have very good results, moderate, to no results or very bad results. It varies person to person.
 

anonymous

New member
thanks for all of your replies. i am not considering going off of it, i guess i will just have to hope that it is doing me some good even though i cannot see/feel it.

dont you wish there were just more drug options!??!

its funny how people without cf or medical problems just assume there are all these drugs out there to fix everything, when with us, after cultures and synergy tests and things like that, there are really a limited amount!

caitlin
 

HollyCatheryn

New member
My docs have been pressuring me about starting Zithromax. I've been stalling because I don't like the idea of taking an antibiotic I don't need and my PFTs seem to have gone up a bit over the last year without taking it. So, I looked up the research on it.A couple of things didn't impress me. The study sited contained 45 people. Hardly enough to base any real conclusions upon. Most experienced a weight increase of a couple of pounds - hardly enough to get excited about. Most people's PFTs increased around 6-8% - meaning if your PFTs before Zith. were 70 after they are 74.2 - 75.6. For all the trouble you can get into with resistance (the study was only 6 months long) and yeast/gut flora imbalance, I decided it didn't have enough to offer me to make it worth MY while. Now, that said, if you have chronic infections and inflamations (which is not my case) or you're trying to stop a steady decline perhaps trying it would be worth it.
 

miesl

New member
I found an interesting read on the zithromax/PA interactions.

<a target=new class=ftalternatingbarlinklarge href="http://www.rednova.com/news/display/?id=216711&source=r_health
">http://www.rednova.com/news/display/?id=216711&source=r_health
</a>
It explains more the pathways in which zithromax is suspected to work against chronic PA infection.
 

anonymous

New member
Wow. That article is so hard to decipher it must be true! I've been on zithro about four years, and during this time my baseline has remained steady. That's something, considering my FEV1 had dropped 25 percent over the previous two years. The zithro is the only major change my regimen, so I'll go with whatever the article said -- even if part of me still suspects the pills work because they're big and brightly colored.

Q
 

Mockingbird

New member
He he, yeah that article is a bit hard to follow. =-) I think in the first part, though, it says zithromax hinders psudemonis growth, even though psudemonis is supposed to be resistant to it. I thought that was interesting.
 
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