Colomycin

[Monetlover]

Have been on waiting list for inhaled Colomycin for 3 years, for treatment of Pseudonomas in lungs.have had Brinchiectasis sinceI was eighteen. Never smoked, just had childhood illness with out antibiotics. Has anyone had this treatment?

[Hidden]

Yes quite a few of us have nebulised or are nebulising colomycin. It is done to keep down the numbers of pseudomonas. Most people find it very effective. I cannot understand why you have been told that you are on a waiting list and waiting 3 years is ridiculous. It is readily available. You need to get on to your consultant's secretary and tell them that you have obviously been overlooked. You will need to do a test of the drug in a visit to hospital to check that it doesn't make you breathless. Get on their backs! We really do have to be proactive in our interests and vociferous in getting the right treatment. Good luck.

[Monetlover in reply to Hidden]

Thanks for your reply. Maybe it is a postcode thing. I live in PE6. Evidently Papworth Consultants are visiting our hospital, Peterborough, as an outreach clinic to assess patients on the list. Suggested is a Brexit thing and the drug is in short supply. This obviously isn’t true. Thank you again, will investigate.

[Hidden in reply to Monetlover]

They are just being lazy and neglecting your needs. Time to kick butts 😊

[poppyshola in reply to Hidden]

I agree Littlepom ... that's ridiculous.. someone somewhere has forgotten ,

[BEaChbe4cH]

Agree with little Pom . Attend royal Stoke hospital and prescription done straight away. Initial supply from hospital then Gp. No problems with supply. Three years shocking. Needs prompt action

[Monetlover in reply to BEaChbe4cH]

Will be chasing up ASAP. Thanks

[cat50]

I am at Nottingham city and I was given the treatment straight after they tested to see if I tolerated it.As LittlePom said time to kick ass.It’s used on many Bronchiectasis patients.I have had no indication it is in short supply.

[Monetlover in reply to cat50]

They have made various excuses, one getting the right nebuliser. Thanks

[cat50 in reply to Monetlover]

my hospital gave me one immediately.Doyou do any nebulising? .I also nebulise 7% hypertonic sodium chloride solution .Pseudomonas should have a planned treatment not left 3years to decide.You have to be very proactive with this disease and read up as much as you can.Point them to theThoracic guidelines for Bronchiectasis with pseudomonas.

[Mooka]

I’ve been nebulising colomycin for five years. There’s no shortage. Just a point though this is to keep the pseudomonas numbers down you will need appropriate antibiotics first. You’ve been forgotten if you’ve been waiting three years.

[Monetlover in reply to Mooka]

it may be longer than 3 years. Mentioned colomycin ages ago. Take azithromycin 3 times a week as a prophylactic.

[Alberta56]

I hope you get it soon. 3 years is an intolerable wait.

[Maturin371]

Hi I'm guessing that if you are taking Az 3 times per week and sort of doing ok this is what your consultants feel you need at the moment. I think if you have pseudomonas colonised it would have overtaken you ages ago without effective treatment (ie the colomycin)? But obviously you need to check in with the docs to see what's what.

[Chrisvern]

I agree with those who say that you should never have had to wait that long. Colomycin and nebulisers are readily available in the NHS.

One thing though, don't hold out too much hope about nebulised colomycin doing much about your pseudomonas. Mostly, once they're in your lungs, they are there to stay. Colomycin is only a prophylactic antibiotic similar to Azythromicin. The difference is one goes to the inside of your lungs (nebulised colomycin) and the other reaches your lungs on the outside via blood. All they might do is stop you catching other infections than the ones pseudomonas generate which are antibiotic resistant.

Personally, as I have COPD too, I found that taking nebulised antibiotics (Colomycin or Gentomycin) just further impaired my breathing so I stopped using them and saved myself a lot of faff! I do occasionally use nebulised salbutamol if I feel that my usual inhalers are inadequate for the situation.

Hope that helps

Chris

[Hidden in reply to Chrisvern]

Colomycin and azithromycin have different functions. Azithromycin works against inflammation which deters different bacterias. I took it for 5 years but had to stop wheny heart failed. Colomycin goes directly into the lungs to keep down pseudomonas numbers to a level which can be lived with. You are right, once it's there it's there.Even though I have bronch,I like you had breathlessness nebulising all of the abs except ceftazidime ( broncho spasm) and so it is IV for me now if the pseudo has a party. I hope that you stay well.

[eleanordigby]

Nebulised colomycin has worked very well for me, for a number of years. A minority of people can’t tolerate it because it can cause lung spasm. When I went for the first dose, I was only fractionally within the acceptable toleration range, but I used my bronchodilator before each dose and over a few weeks found it wasn’t making me wheeze anymore. Thank goodness, because it really suppresses the pseudomonas

[Monetlover]

Thank you to everyone who replied to my post. I appreciate your interest.

I must add I caught pseudonomas about 15+ years ago in hospital and I am now 83 years of age. Suppose I haven’t done too badly, but test every time with pseudonomas from sputum and get very breathless on exertion Will chase up with consultants at hospital.