J
jpdub26
Guest
Is pulmonary MRSA a significant problem for CFers? Share your thoughts?
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TreasureGoddess
Member
We were initially told "oh don't worry, we don't treat for mrsa" when my son contracted it years ago. It's turned into one of his more major issues now 7 years down the line. It's not a horrible thing, it's just something that flares up and often when my son is admitted it's due to the mrsa flare-ups causing issues. I'd suggest being aggressive at treating it if it's just showing up in cultures. Ask lots of questions about how do you treat it, what's the plan, what's the option if we don't treat it, etc. I wish I'd have known more before rather than just taking the CF team's words as gospel.
We are with a different CF center now. We had too many issues with things that "we don't treat" and is "not a big deal" and "oh, that's GI related". We have a CF team that works with endocrine, GI, ENT and infectious disease groups with a give-and-take and sharing of info and creating plans for whatever comes up now. Much happier.
Saying all that, sometimes the mrsa doesn't need to be treated, just ask lots of questions and judge based on how you feel more than what's in the culture. Sometimes MRSA affects people with CF with symptoms and sometimes it's symptomless.
We are with a different CF center now. We had too many issues with things that "we don't treat" and is "not a big deal" and "oh, that's GI related". We have a CF team that works with endocrine, GI, ENT and infectious disease groups with a give-and-take and sharing of info and creating plans for whatever comes up now. Much happier.
Saying all that, sometimes the mrsa doesn't need to be treated, just ask lots of questions and judge based on how you feel more than what's in the culture. Sometimes MRSA affects people with CF with symptoms and sometimes it's symptomless.
I've had it for 5 years, heavy colonization. We've tried to kill it to no avail. I can't say it's really increase my exacerbations all that much, it's just another bug in the cesspool that is my lungs. Based on just the few posts here, it's impact varies by person. There's some good treatments on the horizon for it though, like Aerovanc. Waiting to get on that study.
Since my first confirmed MRSA colonization 5 or 6 years ago, my relative lung health has taken a nose dive. Whereas I might have needed IVs once a year or even every few years, I'm on average needing them every 5-6 months, with several rounds of oral Antibiotics in between. I also find that my MRSA encourages my PA flareups.
Not everyone who cultures MRSA gets sick with it (I believe that 70% of most people - not just people with CF - carry MRSA in their noses), but I do. It really s*cks.
Not everyone who cultures MRSA gets sick with it (I believe that 70% of most people - not just people with CF - carry MRSA in their noses), but I do. It really s*cks.
W
welshwitch
Guest
I've had MRSA for years and it hasn't given me too much trouble. PFT's still over 100%.
I feel like there may be another thread on this topic - so you might want to do a search for it to get more info. My brother and I both have MRSA and we both have Df508. He's older and has a more mild case and only cultures MRSA. He has only been on IV's once for it and orals a few times and he has cultured it for many years. His mucus hasn't really thickened and his FEV1 is about the same. I first cultured PA and then cultured MRSA maybe 5 years ago. When I first cultured it, it didn't effect me that much, I would go on IV's and be good for at least a year and feel great after IV's. After 2-3 years of culturing it, it started causing me more problems - it has made my mucus super thick and I have to go on orals every few months. Orals make me feel better while I'm on them, but as soon as I finish the antibiotics I feel crummy again and my mucus just comes back in full force. I often cough in the middle of the night now because no matter how much I do nebs and my vest I still feel like there is mucus that needs to get out. My cough frequency has increased and is much more noticeable to me and other people I meet. I never used to have people comment on my "coughing" and now I get it on a daily basis. My FEV1 surprisingly hasn't lowered that much maybe 10% and it surprises me every time I go to the doctor because even though I always feel like crap, my numbers are still good.
The one good thing that has come from culturing MRSA is that it has pretty much taken over my super resistant Pseudomonas so now I don't have that causing me issues.
But as previous people have said, it effects everyone differently. I thought I would give the differences between siblings as an alternate.
The one good thing that has come from culturing MRSA is that it has pretty much taken over my super resistant Pseudomonas so now I don't have that causing me issues.
But as previous people have said, it effects everyone differently. I thought I would give the differences between siblings as an alternate.