My latest treatment for colonised Pseudomonas

[poppyshola]

After receiving results for the dreaded pseudomonas again ... Doc told me its colonised and that's it ... so changed my way of thinking ... So when I think I might have an infection, to get a test done via GP but don't panic as the stubborn bugger won't necessarily need Iv antibiotics yet ..

The new very young consultant I saw is trying me on nebulised Ceftazidime (1g + 3 of water for injections x twice a day) and yuk it's the horrible cat pee smelling one ... so struggling with it but trying hard to tolerate the taste and wanting to vomit ... but it does help to clear the chest, it would probably help to clear blocked drains too.

It makes me paranoid that I stink of cat pee but hubby said it doesn't nevertheless I feel an urgent need to bath straight after treatment ...

Has anyone else had the pleasure of this stuff

[Yumz199725]

Ahh you poor thing, I've never heard of this condition before and treatment dosent sound very nice, hope you don't have to put up with this much longer! ❤️X

[poppyshola in reply to Yumz199725]

Thankyou Yumz199725 ... its OK although its nasty I'm getting a bit more used to it and I'm finding there are times where its more tolerable .. its definitely easier when it's a bit cooler 😊 x

[Yumz199725 in reply to poppyshola]

Yeah this heat must make it worse! 💔X

[Hidden]

I have been colonised with pseudo since 1986. I nebulised ceftazidime for fifteen years which did a grand job of keeping the numbers down until my lungs began objecting to all forms of nebulised antibiotic. Before going on to nebulised amtibiotic, my bronch specialist ( who is co chairman of the British Thoracic society) is more likely to give a good clearout dose of IV ( which most of us can do at home now) to give the nebulised antibiotic a good base to start from.

[poppyshola in reply to Hidden]

Hi Littlepom.. thanks for your always so very helpful advice.. I've been colonised for quite a long time before (years) and read that it never goes away but then one of my tests revealed it to absent so I was hoping like we do that if I tried to nip my infections in the bud it would stay away 🫡but no such luck ... it reappeared it was either that or Aspergillus ,.. I'm usually treated with IV antibiotics at home, but a new crew of consultants, junior doctors and physios have appeared and I guess unlike the old professionals they like to prove themselves to be super efficient and try something different.. so this time it's nebulising Ceftazidime... last time it was Meropenem, and my body is reacting ... usually feeling a bit lightheaded, gripey tummy etc... I admit the ceft seems to be quite effective but ugh the smell and the taste 😑

How did you stand this yucky treatment for 15 years ? There's me thinking it's a new thing they're trying ..

I'm being a bit naughty and adding 1 extra ml of the water because just adding 3ml to 1m of Ceftazidime chokes me .. at least its a bit more bearable ...

Thanks to you Im readily informed that it's been tried before

I'd much rather see the older consultants whereby if I thought I had an infection ... I took the test and if I proved to have Pseudomonas and felt a bit poorly they would see me, do bloods etc then send me home with IV treatment... I mean that's usually 2 different meds too .. usually Ceftazidime plus one other ..

I'm hoping this works quick because I can't see myself spending years doing this ..

[Hidden in reply to poppyshola]

Pseudo doesn't always show up on lab tests because the numbers are too low and the tests aren't sensitive enough. Believe me, it is always lurking. New doctors have got everything back to front. Your more experienced docs were right and your IV treatment correct.Nebulising is to keep numbers down after IV and hopefully preventing the numbers increasing again but is not effective enough to get them down in the first place. Nebulising is meant to be a long term treatment. These supposed consultants are not experts in bronch. They have too little experience or training in it. No wonder it tastes horrible. It should be nebulised with 5ml saline, not water. 1ml is ridiculous and not diluting it enough. I think that you need to educate these whipper snappers as I have had to do with various doctors during my recent 12 week stay in hospital due to 4 pneumothorax.

Don't forget that the most important thing is to empty your lungs fastidiously every day to deprive the pseudo of the warm wet environment that it likes to breed in.

[poppyshola in reply to Hidden]

Omg Littlepom. ❤️ What would we do without you? I did think it a bit odd and unbelievable that they would expect us to tolerate this so easily... I did think that maybe he was a little bit annoyed with me for previously refusing to take Ciprofloxacin, even though the lovely nurse tried to reassure me its a smaller dose .. because I tell every single doctor don't even think about giving me Ciprofloxacin because when previously given it I took just one tablet and my legs went from underneath me I was sick from mouth and bum and was dizzy as he'll I actually thought I was dying .. so no I'm not even taking a little smithereen of it.., I'm just looking at my box of 'water for injections' 5ml .... instructions are use 3ml reconstitute each 1g vial of Ceftazidime TWICE a day... its a bit worrying they can get that so wrong ...

I think I'm going to have to email lung defence to let them know I'm finding it hard to tolerate it and see what they come up with ... I won't address it to said new consultant though.

Thank you so much Littlepom if it wasn't fir you I would have carried on feeling guilty for putting 1 extra ml of water in making it 4ml when it really needs 5ml ..

I'll keep you posted ❤️

[Hidden in reply to poppyshola]

Good luck with that! It is 0.9% saline which is far more gentle on the lungs than water. I still have some ceftazidime in my cupboard which says on it ‘’ dilute with 5ml 0.9% saline). You should be able to tolerate it if it is diluted properly. For me it was the best one to nebulise although they could try colistin. I have never felt sick or had a reaction with nebulising . I occasionally take cipro if I have an exacerbation. I have had masses of it over the years and have not had ligament problems. I do get sore mouth from everything and oral abs can make me very tired. We have to balance off these side effects against the benefit that the drug gives us. Do remember that if you keep refusing various drug options their options are limited.

1% water is the dilution for injection. Whoever dispensed it to you must have thought that it was being used for injection. A horrible mistake and must be pointed out to them.

[poppyshola in reply to Hidden]

Hmn I'm looking at the instructions Ceftazidime 1g powder for solution for injection or infusion

Ceftazidime 2g powder for solution for injection or infusion

No mention of nebulising

For the intramuscular injection 1 or 2 ml dilutant is 3ml lidocaine

For IV ... 1g or 2g dilutant is 10ml water for injections

It's very confusing ... do you think I have the correct Ceftazidime for nebulising

[Alberta56 in reply to Hidden]

OMG. So these clever new doctors are putting this poor lady through grief for nothing. Bless you Lp for pointing this out.

[Alberta56]

I hope the vile cat pee stuff does the job quickly. The cure sounds almost as bad as the disease. xxx

[poppyshola in reply to Alberta56]

Me too Alberta, Ceftazidime is one of the antibiotics I would usually have in the vein and even then, when preparing it you would usually try to hold at arms length to remove the needle from the bottle of antibiotic powder or get squirted at from the syringe leaving the bottle.. its very fizzy so spits all over you x

[Jaybird19]

read littlepom for a start. she knows most about it

[poppyshola in reply to Jaybird19]

Thankyou Jaybird ... yes littlepom definitely knows more about this than anyone she's a real gem x

[Izb1]

Doesnt sound too good poppyshola but if it works then it will be worth it x

[poppyshola in reply to Izb1]

You're right Izb1, I am forcing myself ... it is helping I keep telling my repulsed stomach that lifts when I first inhale .. but hopefully I'll get used to it and not care so much I smell of cat pee 😂

[Mooka]

like Littlepom I had two weeks of iv antibiotics to get the pseudomonas numbers down and then went onto nebulised colomycin. Still using the nebuliser five years later. I cannot imagine having to nebulise that vile smelling stuff it’s bad enough preparing it for injection. I’d definitely ask for a different antibiotic. Good luck.

[poppyshola in reply to Mooka]

Hi Mooka, that was me a few years ago, nebulising Colomycin until getting pseudomonas then a 2 week course of IV, then back to nebulising Colomycin was having IV approx 3 times a year until my body didn't like Colomycin anymore ... After stopping Colomycin have tried a few different things, then ended up on Carbocisteine which I have much faith in, Uniphyllin, and when needed IV ... Always taking the usual Ventolin and Seretide inhalers too..

Oddly touch wood, Covid left me alone 😔 plus I had no infections for approx 2 years while Covid was rife.. probably because I hardly went out at all ..

Yes it's definitely, without a doubt vile... x

[Oshgosh]

hi,sorry for not replying sooner,but only came out of hospital last evening.I don’t know much about pseudomonas,but the cat pee thing sounds like another version of hell.

I hope it works out for you in the long run.

It seems to me that in the world of lung,most things have to be considered in the long term.i hope that makes sense

[poppyshola in reply to Oshgosh]

Hi Oshgosh, sorry to hear you've been in hospital, hopefully you're much better now 😊 Pseudomonas is a funny old thing .. you don't really know you've got it until your lungs start feeling a bit full and tight ... sometimes little pains shoot through them but quite honestly you get so used to little lung pains and feelings you don't always act on them ... I'm pretty sure they'll find something to give me .. hopefully IV which consists of 2 different antibiotics.. Yes in the world of lung, long term is what it is but I feel much luckier than some x

[Ergendl]

Oh, dear! But if it's doing the trick, it's worth persevering. Hopefully you'll get inured to the smell..