Pseudomonus V meds

[angie26]

It seems I cannot tolerate nebulising Colomycin or Tobramycin , is there any other way to take these as I understand that they are the only meds to help with Pseudomonus? Awaiting hospital getting in touch!

[Hidden]

I nebulise ceftazidime as I can't tolerate those either. Your consultant will have to prescribe it and probably the hospital supply it as it is difficult to source.

[angie26 in reply to Hidden]

Thanks for the reply good to know! I wasn't sure whether there was anything else X

[Hidden in reply to angie26]

As you have been nebulising I presume that ciproxin taken orally doesn’t work for you any longer? Sometimes it shows in the lab as ineffective against pseudo but actually works in the body. There are also IV Tazocin, Meropenem and Gentamycin but I hope that you aren’t needing that.

[angie26 in reply to Hidden]

Hi Littlepom, I haven't to my knowledge had ciproxin or the IV ones you mention but nurse said this morning that they will try Gentamycin, however my Consultant wants me to have a bronchoscopy next week, watch this space!!!

[Hidden in reply to angie26]

Gentamycin would be my absolute last drug of choice. I tried nebbing it years ago and it closed my lungs down! I have been offered it IV but so far have had the others. I really think that you need to see a bronch specialist to tell your GP what to give you.They sound all at sea there. If u don't have a bronch expert look up one in your area and insist on being referred on thr grounds that your bronch is not being controlled properly. They are usually at big teaching hospitals.

[angie26 in reply to Hidden]

Hi it is not my GP it's the consultant in the hospital, he is head of Respiratory! I am horrified what it did to you, I will ask questions, frightening X

[Hidden in reply to angie26]

Just check that he is also a bronch expert. Sorry to be pedantic but it is important. Gentamycin is a very old and ferocious drug. They still use it for IV but you have to have your blood tested every 48 hrs. I tried it nebulised 18 years ago and it is not used in my clinic to nebulise since colomycin, tobramycin and ceftazidime came along. As you can’t tolerate tob and colo I wouldn’t be surprised if you can’t tolerate gentamycin. I had been doing it about two weeks when I became terribly breathless. No usual sputum, just clear superglue! It took 6 months of just nebbing saline to get my breath back. I took part in a trial of nebulised cipro in 2009. It worked like magic but wasn’t approved by the FDA or NICE. The drug company has changed the name of the drug and are trying again to get it licensed. Some of us on this site have submitted letters to the enquiry in support of licensing cipro for nebulisation. So fingers crossed.

I hope that they find something to help you that you can tolerate. I find nebbed ceftazidime to be fine and it was very effective by IV 18 years ago.

[angie26 in reply to Hidden]

very frightened X

[Hidden in reply to angie26]

You don’t need to be. Talk to them about the gentamycin. If you start nebulising it you will soon knowif you begin to react and just stop it. Some people are fine with it. You are the person who knows your body best and you are the one to make the decisions. Remember we pay these doctors wagesXx

[angie26 in reply to Hidden]

Thank you X

[Sohara in reply to angie26]

I agree with Littlepom. You have no reason to be frightened. You luckily have found this site and are getting good help from fellow Pseudo sufferers , who have trod this road before you and so can help you to help your doctors to get you the right treatment for YOU. The one thing I have learned is that we all have to take our own health care into our own hands. Doctors and consultants are swamped with work in the NHS at the moment, therefore we have to research for ourselves so that we can find the drugs and vitamins etc that help us to stay as healthy as we can. It can be done Pseudo can be controlled , no need to be scared we will all be with you through this.

Love Sohara

[angie26 in reply to Sohara]

thank you X

[Hidden in reply to angie26]

I wouldn’t let them within five miles of me with a bronchoscope. Is your consultant a bronchiectasis specialist or a general respiratory consultant. I’m afraid that general resp cons tend to know very little about bronchiectasis but pretend that they do. They don’t need to do a scope to determine which bacteria is in there as they can send sputum which you cough up to the lab. I am very surprised that your consultant has never given you oral cipro as it is the front line drug against pseudomonas. A bronch specialist would know that. Do think very hard before you let them loose on you with their toy.

[angie26 in reply to Hidden]

I will question oral Cipro thanks X

[Reading4everyone in reply to angie26]

Hi Angie, it is so difficult to find a drug that works for different individuals. I tried gentamicin for several months via a nebuliser which kept the bugs at bay but the side effects were unbearable. It affected my balance, caused hearing loss and I developed tinnitus. Eventually just the hearing loss remained. Not everyone would react in the same way. It is try a drug and find out unfortunately. All the best.

[cofdrop-UK]

Snap. I can't tolerate nebulising Colomycin or Tobra either. Not sure about Ceftaz as I had difficulty with it with my GI probs from IV. It's a bummer when you can't tolerate meds which you know would help to keep the horrors in some kind of order. I am lucky enough to be able and allowed to do IVs at home. Are you able to take a prophelactic antibiotic eg Azithromycin - may be helpful. As LP says Cipro is an option for an exacerbation if you tolerate it ok.

Good luck and if you find something, please let me know!

cx

[angie26 in reply to cofdrop-UK]

Hi thanks for your reply, my Consultant now wants me to have bronchoscopy, last one I had I thought I was going to die!! I thought they had given me too much meds! apparently they are now considering Gentomicin, I did have IV at home prior to the Colomycin , to be honest I have lost count of the drugs I have had. 2014 I had TB and was given a cocktail of drugs and they completely floored me. I'll let you know what the outcome of the bronchoscopy is X

[angie26 in reply to cofdrop-UK]

Hi, is Clarithromycin similar that really helped me out last time?

[cofdrop-UK in reply to angie26]

Clarithromycin and Azithromycin are in the family of antibiotics called macrolides. Gentomycin and Tobramycin are in a different group called aminoglycoside.

cx

[angie26 in reply to cofdrop-UK]

sorry, yes that's what was asking, Clarithromycin & Azithromycin being similar as I was on Clarithromycin which helped me enormously X

[Sohara]

I am sorry to hear about your troubles with the drugs, but you are getting Brilliant and expert advice from Littlepom and Cofdrop. I as well am surprised you have not been prescribed Ciprofloxicin as this is THE best oral antibiotic for Pseudomonas , although not everyone can tolerate it.

Also you should ask about Azithromycin as a prophelactic antibiotic. It was like a miracle drug for me and has cut my infections down by about 75%

Good luck

Love Sohara

[angie26 in reply to Sohara]

Thank you Sohara, I'm at a loss now! prior to the Colomycin I had 2 weeks of IV with Tazosin which was fine, it was some time before I then had the Colomycin and I had the most terrible chest infection and I took my Amoxicllian which did not touch it and my GP gave me steroids and Clarithromicin and touch wood I haven't had a problem for the last 4 months when everyone around me has had it all!!

[hallentine47]

I agree with everything that Sohara has said about this situation. Its what my consultant recommended last year when I was infected with Pseudomonas.