How are you treating your MRSA?

[flatfordl]

My daughter has cultured MRSA for two almost three years now. Her MRSA is now considered colonized. Our Docs have never treated her for it and always acted like it was no big deal.

Until her last CF Clinic when he told us she needed to start Tobi 28 on 28 off. Keep in mind we have never had to do Tobi before. And why now is he going to treat the MRSA? I asked him this and he said he has found that patients who are on Tobi that culture PA and MRSA, have found a decrease in their MRSA numbers and he believes it is due to the Tobi. He admits there is no research to back this up.

We told him we would start Tobi when it is on the market in the powder form (hopefully soon).

Has anyone else been told this? How is your doc treating your MRSA?

 

[flatfordl]

My daughter has cultured MRSA for two almost three years now. Her MRSA is now considered colonized. Our Docs have never treated her for it and always acted like it was no big deal.

Until her last CF Clinic when he told us she needed to start Tobi 28 on 28 off. Keep in mind we have never had to do Tobi before. And why now is he going to treat the MRSA? I asked him this and he said he has found that patients who are on Tobi that culture PA and MRSA, have found a decrease in their MRSA numbers and he believes it is due to the Tobi. He admits there is no research to back this up.

We told him we would start Tobi when it is on the market in the powder form (hopefully soon).

Has anyone else been told this? How is your doc treating your MRSA?

 

[flatfordl]

My daughter has cultured MRSA for two almost three years now. Her MRSA is now considered colonized. Our Docs have never treated her for it and always acted like it was no big deal.
<br />
<br />Until her last CF Clinic when he told us she needed to start Tobi 28 on 28 off. Keep in mind we have never had to do Tobi before. And why now is he going to treat the MRSA? I asked him this and he said he has found that patients who are on Tobi that culture PA and MRSA, have found a decrease in their MRSA numbers and he believes it is due to the Tobi. He admits there is no research to back this up.
<br />
<br />We told him we would start Tobi when it is on the market in the powder form (hopefully soon).
<br />
<br />Has anyone else been told this? How is your doc treating your MRSA?

 

[Jana]

I've been colonized with MRSA for quite a while--maybe 10 years now? I didn't think TOBI was effective against MRSA, but I've been doing the 28 on/28 off to help control pseudomonas since before my issues with MRSA began.

My doctors treat it when it's symptomatic. Often that involves some guess work since it's hard to tell which bacteria is causing the problem, and sometimes both have to be treated together. Usually a round of oral Zyvox does the trick for me, but sometimes I take Vancomycin. Often I'll go for long periods with no trouble from MRSA, but then other times it just won't quit, with issues starting back quickly after a round of antibiotics.

If your daughter is colonized with pseudomonas as well, it seems like TOBI would be a good idea anyway. I think it has made a real difference for me.

Hope this helps!

 

[Jana]

I've been colonized with MRSA for quite a while--maybe 10 years now? I didn't think TOBI was effective against MRSA, but I've been doing the 28 on/28 off to help control pseudomonas since before my issues with MRSA began.

My doctors treat it when it's symptomatic. Often that involves some guess work since it's hard to tell which bacteria is causing the problem, and sometimes both have to be treated together. Usually a round of oral Zyvox does the trick for me, but sometimes I take Vancomycin. Often I'll go for long periods with no trouble from MRSA, but then other times it just won't quit, with issues starting back quickly after a round of antibiotics.

If your daughter is colonized with pseudomonas as well, it seems like TOBI would be a good idea anyway. I think it has made a real difference for me.

Hope this helps!

 

[Jana]

I've been colonized with MRSA for quite a while--maybe 10 years now? I didn't think TOBI was effective against MRSA, but I've been doing the 28 on/28 off to help control pseudomonas since before my issues with MRSA began.
<br />
<br />My doctors treat it when it's symptomatic. Often that involves some guess work since it's hard to tell which bacteria is causing the problem, and sometimes both have to be treated together. Usually a round of oral Zyvox does the trick for me, but sometimes I take Vancomycin. Often I'll go for long periods with no trouble from MRSA, but then other times it just won't quit, with issues starting back quickly after a round of antibiotics.
<br />
<br />If your daughter is colonized with pseudomonas as well, it seems like TOBI would be a good idea anyway. I think it has made a real difference for me.
<br />
<br />Hope this helps!
<br />

 

[Rebjane]

My daughter has cultured MRSA for about 5 years off and on. When she first cultured it she was sick and they tried Bactrim at first that was not effective then ZYvox which worked great but then her cough would come back. Eventually she needed IV Vanco and a hospital admission and eventually things calmed down, We were unsuccessful at trying to get rid of it.

So, when she has a flare up and is symptomatic is when we treat her MRSA; Zyvox is what we use plus she is on a daily dose of Bactrim prophylactically.

I also thought TOBI was not effective against MRSA. However, My daughter recently cultured PA and the doc put her on TOBI and Cipro and I questioned him about her MRSA and he said the TOBI may help with the MRSA(maybe it's just anecdotal?)...Anyway, long story short, my daughter did end up on Zyvox as well because she got the flu. Her repeat sputum culture showed only staph aureus not MRSA not PA

Only time will tell about her next culture I guess.

Anyway, Zyvox is our drug to treat MRSA, usually my daughter is on it once a year.

HTH

 

[Rebjane]

My daughter has cultured MRSA for about 5 years off and on. When she first cultured it she was sick and they tried Bactrim at first that was not effective then ZYvox which worked great but then her cough would come back. Eventually she needed IV Vanco and a hospital admission and eventually things calmed down, We were unsuccessful at trying to get rid of it.

So, when she has a flare up and is symptomatic is when we treat her MRSA; Zyvox is what we use plus she is on a daily dose of Bactrim prophylactically.

I also thought TOBI was not effective against MRSA. However, My daughter recently cultured PA and the doc put her on TOBI and Cipro and I questioned him about her MRSA and he said the TOBI may help with the MRSA(maybe it's just anecdotal?)...Anyway, long story short, my daughter did end up on Zyvox as well because she got the flu. Her repeat sputum culture showed only staph aureus not MRSA not PA

Only time will tell about her next culture I guess.

Anyway, Zyvox is our drug to treat MRSA, usually my daughter is on it once a year.

HTH

 

[Rebjane]

My daughter has cultured MRSA for about 5 years off and on. When she first cultured it she was sick and they tried Bactrim at first that was not effective then ZYvox which worked great but then her cough would come back. Eventually she needed IV Vanco and a hospital admission and eventually things calmed down, We were unsuccessful at trying to get rid of it.
<br />
<br />So, when she has a flare up and is symptomatic is when we treat her MRSA; Zyvox is what we use plus she is on a daily dose of Bactrim prophylactically.
<br />
<br />I also thought TOBI was not effective against MRSA. However, My daughter recently cultured PA and the doc put her on TOBI and Cipro and I questioned him about her MRSA and he said the TOBI may help with the MRSA(maybe it's just anecdotal?)...Anyway, long story short, my daughter did end up on Zyvox as well because she got the flu. Her repeat sputum culture showed only staph aureus not MRSA not PA
<br />
<br />Only time will tell about her next culture I guess.
<br />
<br />Anyway, Zyvox is our drug to treat MRSA, usually my daughter is on it once a year.
<br />
<br />HTH

 

[xosder22]

tobi is not for the treatment of mrsa. tobi is strictly used for PA. mrsa is treated with bactrim or linezolid orally or vancomyacin iv

 

[xosder22]

tobi is not for the treatment of mrsa. tobi is strictly used for PA. mrsa is treated with bactrim or linezolid orally or vancomyacin iv

 

[xosder22]

tobi is not for the treatment of mrsa. tobi is strictly used for PA. mrsa is treated with bactrim or linezolid orally or vancomyacin iv

 

[pipersmom]

Many Drs are using TOBI on MRSA patients, Piper takes it as well. She has not cultured pseudo for 6 yrs, but there is some thought that MRSA can mask pseudo on a culture.

Piper takes bactrim as needed, though I'm considering asking for her to be back on it f/t. We were trying to give her a break from it so she wouldn't develop resistance, but she's ending up on it at least once a month anyway. We have not done oral zyvox because they're trying to save it for when nothing else (namely the bactrim) works. She has done IV zyvox, and usually uses that, meropenem, and either tobra or timentin, when she has an exacerbation. She has a severe reaction to vancomycin (red mans x 10) so it is completely off the table, unfortunately.

Lynsey, I would try the TOBI, but I tend to take an aggressive stance because of Piper's history. At this point for us, any weapon in the arsenal that may help is put to use, particularly when it won't cause harm.

 

[pipersmom]

Many Drs are using TOBI on MRSA patients, Piper takes it as well. She has not cultured pseudo for 6 yrs, but there is some thought that MRSA can mask pseudo on a culture.

Piper takes bactrim as needed, though I'm considering asking for her to be back on it f/t. We were trying to give her a break from it so she wouldn't develop resistance, but she's ending up on it at least once a month anyway. We have not done oral zyvox because they're trying to save it for when nothing else (namely the bactrim) works. She has done IV zyvox, and usually uses that, meropenem, and either tobra or timentin, when she has an exacerbation. She has a severe reaction to vancomycin (red mans x 10) so it is completely off the table, unfortunately.

Lynsey, I would try the TOBI, but I tend to take an aggressive stance because of Piper's history. At this point for us, any weapon in the arsenal that may help is put to use, particularly when it won't cause harm.

 

[pipersmom]

Many Drs are using TOBI on MRSA patients, Piper takes it as well. She has not cultured pseudo for 6 yrs, but there is some thought that MRSA can mask pseudo on a culture.
<br />
<br />Piper takes bactrim as needed, though I'm considering asking for her to be back on it f/t. We were trying to give her a break from it so she wouldn't develop resistance, but she's ending up on it at least once a month anyway. We have not done oral zyvox because they're trying to save it for when nothing else (namely the bactrim) works. She has done IV zyvox, and usually uses that, meropenem, and either tobra or timentin, when she has an exacerbation. She has a severe reaction to vancomycin (red mans x 10) so it is completely off the table, unfortunately.
<br />
<br />Lynsey, I would try the TOBI, but I tend to take an aggressive stance because of Piper's history. At this point for us, any weapon in the arsenal that may help is put to use, particularly when it won't cause harm.

 

[janddburke]

My daughter cultured MRSA for the first time about 5 years ago. nothing worked until we tried Zyvox (YUK, I'll spare you the details) this did the trick.

now if she has any cough we treat right away with Bactrim. haven't needed the Zyvox again.

Quite frankly, since the MRSA diagnosis she has never done better (knock wood). Knowing what we were dealing with and how to treat it really seemed to make all the difference.

this week she is even trying out for her High School Lacrosse team!

~~Debbie

 

[janddburke]

My daughter cultured MRSA for the first time about 5 years ago. nothing worked until we tried Zyvox (YUK, I'll spare you the details) this did the trick.

now if she has any cough we treat right away with Bactrim. haven't needed the Zyvox again.

Quite frankly, since the MRSA diagnosis she has never done better (knock wood). Knowing what we were dealing with and how to treat it really seemed to make all the difference.

this week she is even trying out for her High School Lacrosse team!

~~Debbie

 

[janddburke]

My daughter cultured MRSA for the first time about 5 years ago. nothing worked until we tried Zyvox (YUK, I'll spare you the details) this did the trick.
<br />
<br />now if she has any cough we treat right away with Bactrim. haven't needed the Zyvox again.
<br />
<br />Quite frankly, since the MRSA diagnosis she has never done better (knock wood). Knowing what we were dealing with and how to treat it really seemed to make all the difference.
<br />
<br />this week she is even trying out for her High School Lacrosse team!
<br />
<br />~~Debbie

 

[joeytsmom]

My son (11 yrs) has had colonized mrsa in high levels for years now. We were told "oh we don't treat that" but Joey was SICK whenever it would rare up. He'd get worse cough, congestion, decreased energy, low apetite, etc. He'd go on zyvox (pill form) for 2 weeks, feel a little better, then go back to a sick little kid. It sucked.

He was hospitalized for 2 weeks last March and had iv antibiotics, seemed to help but a few months later, symptoms were back.

Now instead of Tobi, which the body can build up immunity, another CF parent from a different part of the country said they were using Gentamicin, an inhaled antibiotic not much used with cf any longer. We tried it and it's been like a miracle drug for Joey. He has a vial each morning through the nebulizer and pulmozyme at night. The symptoms disappeared, coughing almost entirely gone and his latest sputum cultures showed FEW mrsa as he's been way over many for years. YAY! His dr said he's not putting other patients on gentamicin. It's not supposed to be irritating or lose potency. Not supposed to build up immunity. Ask your dr about it. It couldn't hurt!

 

[joeytsmom]

My son (11 yrs) has had colonized mrsa in high levels for years now. We were told "oh we don't treat that" but Joey was SICK whenever it would rare up. He'd get worse cough, congestion, decreased energy, low apetite, etc. He'd go on zyvox (pill form) for 2 weeks, feel a little better, then go back to a sick little kid. It sucked.

He was hospitalized for 2 weeks last March and had iv antibiotics, seemed to help but a few months later, symptoms were back.

Now instead of Tobi, which the body can build up immunity, another CF parent from a different part of the country said they were using Gentamicin, an inhaled antibiotic not much used with cf any longer. We tried it and it's been like a miracle drug for Joey. He has a vial each morning through the nebulizer and pulmozyme at night. The symptoms disappeared, coughing almost entirely gone and his latest sputum cultures showed FEW mrsa as he's been way over many for years. YAY! His dr said he's not putting other patients on gentamicin. It's not supposed to be irritating or lose potency. Not supposed to build up immunity. Ask your dr about it. It couldn't hurt!