tobrimyacin

[Megan321]

Diagnosed with pseudomonas, as written in a previous post 6 weeks ago. Will be starting Tobi...inhalation tomorrow. When I look at the side effects, it scares you to death. On the other hand, I'm sick of coughing, and having dark green Phelgm, excessive sputum etc.....anyone out there experienced this ✌️

[cofdrop-UK]

Are you using a podhaler with Tobi or nebulising Tobramycin through your nebuliser. I don't get on well with Colomycin or Tobramycin but I have asthma too and am intolerant to so many medications, so please don't go by me.

Many people with bronciectasis harbouring pseudo find Tobra very beneficial at helping keep the pseudo under control with less exacerbations. What dosage are you on and are you doing 28 days and 28 days off. It is scary to read any of the patient leaflets but your consultant obviously thinks it is worth you trying this out.

Hope it works well for you.

cx

[Megan321 in reply to cofdrop-UK]

I'll be inhaling it. I think she wants to try and get rid of it, so maybe 3 months.... getting sputum after first month .....

[Hidden]

Dear Megan, I'm not on tobramycin. I'm colonised with pseudomonas too, but at present I nebulise colomycin, which has been very effective for me. Other members here experience of tobramycin though, so hopefully they'll be along to chat.

I know what you mean about side effects of these powerful drugs we bronchs have to take, but have you ever been on a clinical trial? I have, it lasted a year and we had to write down EVERY SINGLE health problem we experienced EVERY DAY of that year. So, that's every headache, gut problem, gynae pain, joint pain, shingles, blah blah blah even if we knew 100% that it was unconnected to the drug being trialled. These problems all get listed as adverse side effects and ranked as either very common, common, uncommon etc down to extremely rare. So since then I treat the listed "side effects" with a pinch of salt - I read them & bear them in mind, just in case I get an unusual symptom, but I don't worry about them.

Of course some people cannot tolerate tobramycin, it makes them wheezy, but presumably you'll have a run-through with the drug to check this doesn't happen.

Are they treating your MAC? I'm just asking because MAC has shown up in my sputum recently but my consultants have decided not to treat it for the time being. As well as pseudomonas I've got a fungal lung infection (aspergillosis) and also a persistent staph infection at the moment so they're trying to deal with those first I think.

[Megan321 in reply to Hidden]

They are dealing first with the pseudo. When that gets put to sleep, then they look at the CT, symptoms, pulmonary tests in April, then we will decide. Toronto Western Hosp doesn't like to do mets unless it is necessary....seems to be an old school way of doing things.....it's all scared stuff we are dealing with.....tsk for your response💕

[Caspiana]

Hello Megan321

I am sorry I am not familiar with the treatment of which you speak, but you're right, reading the possible side effects of drugs can be extremely daunting. The drugs I am on increase my risk of cancer and have even given me a moustache amongst other things. 😑 But luckily the moustache is easily dealt with and side effects generally manageable.

Take it easy. The first few days are always a bit nerve wracking on new meds. It will get better.

Sending best wishes.

Cas xx 😊

[Megan321 in reply to Caspiana]

I know......try to carry on normally....will see how it goes🙏

[angie26]

Hi I have tried Colomycin and Tobrimycin, neither agreed with me, although the hospital trial was OK, I am now due to trial Gentamicin, had a bronchoscopy last week but no results yet, I am a bit concerned to start the Gentamicin as it does have an affect on the liver and frequent blood tests are done whilst on it! my concern is that a few years back after breast cancer I was given an antibiotic which gave me 5 months of jaundice, it was hell!! I am extremely intolerant of some drugs, but we are not all the same , but you sound as though you need to clear your chest infection prior to inhilation??

[Megan321]

Psedomonas is a priority right now. 2 months of Toby, and hopefully that works....you have been through so much, yet you take the time to respond. Thank you for that💞