TREATMENT FOR PSEUDOMONAS.

[Hollyjt]

Hi going on Meropenem again. This is the third time since September. I've had two X rays still showing a shadow on my left lung waiting for a Ct Scan. At the moment I feel like it's never ending. 😕😡 Holly

[sassy59]

Bless you Holly, hoping for better days ahead. You take care xxx😘

[Hollyjt in reply to sassy59]

Thank you Sassy, I appreciate your reply. Holly 🤗❤️X

[Hidden]

Pseudomonas is generally a pain in the bum, partly because there aren’t many oral antibiotics effective against it - only cipro, with some effect occasionally found using doxy - and it has good ability to develop antibiotic resistance. However, there are ways to manage it more effectively once it’s taken up residence: the fact that you’ve needed IVs three times since September for pseudo would suggest to me it’s probably permanently along for the ride, now. I would ask your consultant about nebulised antibiotics: these are usually taken twice a day after finishing physio (but before any steroid inhaler, if you’re on one), and work as a topical treatment to attack the bacteria sat in sputum on the surface of the lung. One of the main reason infections are frequent in both bronchiectasis and cf is that the bacteria are within the sputum, and the immune cells can have difficulty penetrating the excess sputum from underneath to reach them and kill them off. Nebbed antibiotics boost what the immune system does manage to do by coating the sputum from above and attacking the bacteria that way. In combination with effective physio, antibiotic nebs are the best option for managing pseudo long term, and can help reduce the need for IVs.

Fingers crossed that being in for IVs might get the CT scan done a bit more quickly.

[Hollyjt in reply to Hidden]

Thank you for your reply, The problem is I'm very difficult to treat. Had nebulised colomycin, had Cipro nearly closed my kidneys down so hospital said I can't have it anymore, it used to help me a lot since then pseudo has taken over., The gp asked if I had tazocin the micro biologist suggested that it might help but it's down to the consultant. mero was fine till now. I'm a real problem. And you are right the pseudo is a pain in the bum. Holly 😬😢x

[Hidden in reply to Hollyjt]

Hi Holly. Tazocin does nothing for me and my pseudo because it is basically penicillin. There is ceftazidime, which can also be nebulised, Aztreonam if the consultant will get hold of it for you and good old gentamycin which is an extremely effective but harsh drug. Blood tests have to be done on the liver every 48 hrs whilst on it and given your kidney problems, I think it will be a no goer.I would suggest asking about ceftazidime IV which can be followed by long term nebulisation. This worked well for me.

[Hollyjt in reply to Hidden]

Hi Littlepom, Thank you for your reply I had bad reaction with gentamycin. I've never tried ceftazidime,or Aztreonam so I will bear those in mind that's good to know. Pleased you've done well on cefazidime. Take care. Holly X 😀

[Hidden in reply to Hollyjt]

Tazocin (we know it as piptaz) was initially brilliant for the child, but not generally favoured in cf due to the (overblown, in her consultant’s opinion) issue of day 10 reactions and that pseudo seems to acquire resistance to it fairly quickly. Where you have a more resistant strain, though, it can be really good as an alternative and the child had no problems going beyond day 10 for any of the 4 courses of it she’s had in the last 18 months. Azli was liquid gold for us for a while, which she’s back there again for a bit on a trial basis to see if it’s regained efficacy, and Cofdrop was able to successfully access it in her neck of the woods. I’ve just realised that I’m not entirely sure what the situation is with IV Tobi use and BE, but have you ever tried tobi nebs? Those are definitely licensed for BE in the U.K., so there are a few things to potentially try. It’s also worth remembering that IV systemic effects like kidney and liver problems are not usually an issue with nebs as very little if any crosses into the bloodstream, so if IV gent was the problem rather than inhaled, that could still be a possibility. The other thing is, do you take a regular macrolide like azithromycin three times a week? Didn’t do anything at all for the child despite being on it for years, but it is also in the BTS guidelines for BE patients with chronic pseudomonas, and I anecdotally know a lot of patients swear by it for reducing exacerbations.

[Hollyjt in reply to Hidden]

Thank you for your reply Charlie_G Azithromycin wasn't prescribed with me having a bad reaction with nebulise colomycin it worked well for a while it then caused a full blown body rash,that took weeks to clear so they are frightened to try tobi. Yes it was IV gent that I reacted to. So I depended on mero and cipro. Now I'm left with mero and that has decided to act up. The hospital said when I had mero they don't like to give it to often that they would have to try something else I don't no what. Or if I will be able to have anything else on home IV or will be admitted. So Charlie as I said I'm a real problem but I live in hope. It's good that I can talk on here. Holly 😊X Take care of you and the little one. X

[Hidden in reply to Hollyjt]

Azithromycin and colomycin are completely unrelated - allergy or hypersensitivity to one doesn’t have any bearing on trying the other. Only reason to worry about a possible reaction to Zith would be if you’ve reacted to erythromycin previously, or clarithromycin, but even there the evidence is that there’s limited cross-reactivity within the drugs in the macrolide family, so people can often tolerate a different one without issue.

Anyway, good luck, and I hope they find something that works soon. I know the quandary well, albeit from a different perspective, and the problem being resistance rather than intolerances.

[Hollyjt in reply to Hidden]

Thank you. 😊xHolly

[Hidden in reply to Hidden]

We can have tobramycin nebs but not the formulation that is allowed for cf. Too expensive I am told. I tolerated our tobi for about two weeks. I have never been offered tobi I V. It is all smoke and mirrors

[Oshgosh]

I really hope things improve for you.

[Hollyjt in reply to Oshgosh]

Hi Oshgosh thank you I appreciate it. Holly 🙋X

[cofdrop-UK]

OMG we definitely are twins Holly. I empathise what a pain in the a*** being intolerant or allergic to so many drugs is like. I too am colonised with pseudo, cannot take Cipro. Also cannot tolerate nebulised colomycin (put me in hospital), nor can I tolerate neb Tobi (think it might be something to do with the asthma). I had a midline in for a year and now have a port, so at least I’m ready for action.

I don’t do well with Ceph IVs (IBS) so we haven’t gone down the road of neb Ceph. Had Mero (which I prefer when doing own IVs) but not showing complete sensitivity in the lab but we thought it helped a bit but last time we could do FEVs it didn’t budge. Success with Aztreonam but the plan would be to go in for half dose to check if I have a true reaction to this and continue them at home as usual.

I am telling you this to let you know I understand totally with the feeling of ‘running out of options’ but there will be options - even if it’s dual abs. The Tazocin might work very well for you. We are all different and it’s worth a try.

As hard as it is not to be able to take maintenance abs, and it is hard, there will be options so don’t lose heart lovely.

Let us know how you get on.

Love cx

[Hidden in reply to cofdrop-UK]

Oh what a conundrum it is!

[Hollyjt in reply to cofdrop-UK]

Oh bless you dear cof, we are definitely like twins I too have asthma. I hope you are doing fine with the port and you got it sorted. I am so pleased you had successes with Aztreonam and also pleased you can have the treatment at home. Yes it is very hard that thing go this way but it makes a big difference to say how it is on here. Keeping my fingers crossed for you lovely lady. Yes I will let you know how things go. Best wishes Holly 👍X

[TomTitTot in reply to cofdrop-UK]

Can I name myself as triplet. . .

If I don't have stenotrophomonas maltophilia, I have staphylococcus aureus.

I have to be on antibiotics for at least three weeks each time and within three/four weeks I'm repeating an infection. I don't do well with nebulized tobramycin or gentamicin and cipro screws me up as well.

Wicked to be colonized, I'm not a damn continent!

I do have great doctors, but it's hard being a patient they can't fix. I'd much rather be someone who sees a doctor once every ten years, because I've stepped on a nail or fallen from a ladder. . .

We do persevere!

[Hidden in reply to TomTitTot]

Don’t we just!

[Hollyjt in reply to TomTitTot]

Hi TomTitTot, Yes you can be a triplet 🙋 yes I'm lucky I have good doctors they try to do their best for me. Yes it is hard when they can't fix it my gp said it's hard for them too. Yes we have to persevere we have too. I live in hope that one day they might find a treatment that will help. Wishing you all the best take care. Holly 🤗X

[Neville33]

When u were diagnosed with pseudo, did they try cipro or levaquin first..next step is nebulized drugs tobramyacin, Colistin or Cayston...why r they using this drug..I also have pseudo but it is maintained by Colistin..is this an IV drug they r using in you..have they done a sensitivity to see if this drug is working..this info comes from mayo Clinic and NationalJewish

[Hollyjt in reply to Neville33]

Hi Neville33, Ciprofluxine was my first line of treatment then IV with Mero they tried colomycin but had bad reaction same with cipro. So I'm in this situation Mero didn't work. The consultant said they will have to try something else. Holly x

[Bogart24]

Hi there as someone with two strains of psudemonas it can feel bad but you will have good times in between make the most of them Albert

[Hollyjt in reply to Bogart24]

Hi Albert, Yes your right we have to take the good with the bad make the the best of things. Holly x

[Clareyg]

Hi HollyI went onto ceftazadime after piptaz gave me thrombocytopenia and then after the 4th IV course in 5 months onto nebulised Colistin which helped to control it quite a lot and then they worked out it wasn’t only the pseudomonas there was MAC in there as well but they didn’t look for that until they had some control over the pseudomonas for the first time in 3 years. They then started treating that as well and it’s generally quite a bit better on - no IVs since May 20 now which is amazing. Have they screened sputum for NTM varieties? Good luck anyway.

[Hollyjt in reply to Clareyg]

Hi Claryg, It's great that you you haven't needed IV since may. Yes they always do other test along with the pseudo, good luck and best wishes to you also. Holly X

[Hidden]

If this thread proves anything it bears out what I am always banging on about.

How very complex ncfbe is and how every patient is different.

We do have one thing in common!

We fully support each other and share our experiences ina truly positive way to try to help others.

Keep going you wonderful fellow bronchs - and of course our one carer from the cystic fibrosis cohort whose contributions are so helpful and welcome.

👏👏👏👏👏👏👏👏👏👏👏👏👏👏👏👏👏👏👏👏👏👏👏👏👏

[Hollyjt in reply to Hidden]

Hi Littlepom, Yes you are right it is very complex it's great that we have here it's a comfort and brilliant support thank you to our wonderful fellow bronch and also one carer from the cyctic fibrosis and his little one. Bless you all on this forum. Holly XXX

[Hidden in reply to Hollyjt]

💖

[Dedalus]

Hope they find a solution for you soon.

[Hollyjt in reply to Dedalus]

Hi Dedalus thank you for your good wishes. Holly XX

[Alberta56]

I do hope they can find something that works for you soon. One small crumb of comfort- during the bronchi conference that some of us logged in to yesterday, we were told that there is a lot of research and testing of new treatments going on. I know these things take ages to come on stream, but I hope that means that eventually they will be able to offer you something new. Till then hope some existing thing works-these pseudomonas sound an absolute b*****. Best wishes, Alberta xxx

[Hollyjt]

Hi Alberta, Yes I've got to live in hope that they find new treatments and I'll be ok with it.. Yes pseusdomonas is a absolute b*****. Take care Holly 😊xxx

[Megan321]

Do they not use Tobramyacin..this is the main nebulized drug for pseudo...the next pill form is levaquin..maybe suggest this before they keep giving you IV’s..they should be doing a sensitivity test on all drugs..there is also inhaled gentamyacin..lots of luck

[Hollyjt in reply to Megan321]

Hi thank you for your reply I can't have many antibiotic treatment I have bad reactions for alot. Tobromycin is one levaquin is another gentamicin is another one. There fore only mero. Take care Holly 😊