MDR pseudomonas treatments?

J

jjnorthport

New member
I have mdr pseudomonas, I spend so much time trying to clear the thick mucus out that I am exhausted. There are no oral antibiotics for me,and the doc says I'm not exhibiting fevers due to infection so no IVs. I just wish I could get some relief from this mucus. What treatments has anybody been given by their doctors?
jj
 
R

Ratatosk

Administrator
Staff member
When ds cultured pseudo he was on tobi (inhaled) and if he developed a cough he was put on Cipro (oral).

Are you on hypertonic saline (inhaled) or pulmozyme?
 
J

jaimers

Super Moderator
hypertonic saline or pulmozyme could be helpful for you. I'm on inhaled Tobi every other month to combat pseudo. I know your psuedo is MDR but sometimes the bugs respond differently in the petri dish than they do in our lungs. My pseudo is resistant to a lot of drugs on paper but responds pretty well to some of them in reality. Maybe ask if there is a combo of inhaled antibiotics that you can try to see if they help. Maybe alternate Tobi and Cayston every other month or something like that. good luck and hope you feel better soon!
 
A

Aboveallislove

Super Moderator
I am so sorry for how hard this may be. A couple experimental things I've heard of are plage therapy and cystagon. If other things suggested dont work, it might be worth it to research these options and discuss with your doctors.
 
B

believingjesus

Banned
AboveAll: Is that Phage therapy? I looked into that about a week ago but they sent me some email that said they have some treatments available for various resistant bacteria and can be done at home without ever seeing a doctor. It sounded weird and a little quacky. I wish I knew more about results from using cystagon for CF patients?
 
I

imported_Momto2

New member
I've found mucomyst/alupent mix the best for getting out thick, tenacious secretions. Sorry to hear about this, I know how exhausting it can be.
 
B

believingjesus

Banned
I don't know much about pseudo and I hope I don't have to but you might ask your doctor about taking inhaled ceftazidime or inhaled colistin or meropenem aerosols. I heard they work on some other resistant bacteria in CF lungs.
 
J

jjnorthport

New member
Thank you for all of your advice. I am on to Tobi and cays ton and do hypertonic saline 4x a day. My question is how can I get phage therapy in the USA?
again thanks for all advice.
jj
 
B

believingjesus

Banned
jjnorthport: I deleted that email because it looked weird and I did not see how without ever seeing a patient that they could send you therapy treatments to be treated at home. That is what the email said. All I did was look up Phage Therapy and I put in my name and email and what bacteria I was requesting help with. They said they have treatments for it and can be done at home.???? Honestly in my opinion I think they are out for money. I have heard that inhaled fortaz (ceftazidime) and/or inhaled colistin works. Those are being inhaled by people on this forum for other resistant bacteria and they say their lung function has remained stable mostly and in some instances it has increased. Wish you the best.
 
A

Aboveallislove

Super Moderator
This woman has used phage and you might consider touching base with her. http://cfmudda.blogspot.com/
Personally I wouldn't consider unless dire circumstances so I don't want to seem to advocate... I think us is starting to research phage more so maybe there is a clinical trial. I think I'd be more for pushing doctors to try cystagon off label given is fda approved and has a safe profile although it would be off label use. You can pull info on line re the early studies showing it helps cf. I doubt doctors would do in general but in a case where a patient is struggling they'd be more inclined.
 
J

JustaCFmom

New member
jjnorthport said:
I have mdr pseudomonas, I spend so much time trying to clear the thick mucus out that I am exhausted. There are no oral antibiotics for me,and the doc says I'm not exhibiting fevers due to infection so no IVs. I just wish I could get some relief from this mucus. What treatments has anybody been given by their doctors?
jj
Click to expand...

From what I understand, it would be quite rare for someone with CF to have a fever from these infections. (I suppose part of the problem)

Honestly, I would push for some kind of IV antibiotic therapy. What do you have to lose??
 
You must log in or register to reply here.
Top