Still struggling chloramphenicol?.

[carolg1]

Well I’m on my fourth lot of antibiotics, but still bringing horrid thick mucus up it’s been the longest winter ever... I have now been given the antibiotics chloramphenicol which I have never had or seen before anyone else on here had them. Thanks carol

[Hidden]

Yes I’ve had those. Not often prescribed as oral abs, tho often as eye drops for conjunctivitis. No problems on them except night sweats, tho that could’ve been anxiety as I was very unwell at the time

[carolg1 in reply to Hidden]

Hi hanne I’m praying it kicks the butt of this blighter that’s making so much mucus it really does feel like cattarh sinus but no one bats an eyelid, when I tell them how long de mukeing yesterday 6 hours gross

I’m just worn out but sputum samples come back clear or just bacteria ...... hope you are well xx

[Caspiana]

Hello carolg1 .

I can't help with your question, but I just wanted to say, I'm sorry you aren't well. It has been a long winter here too, but not as bad or as long as yours. Please take it easy.

Thinking of you.

Cas xx 🌹

[carolg1 in reply to Caspiana]

Thanks Cas , I keep thinking things can’t get much worse now after ct scan my suspicious looking nodules following pet scan look naughty but they can’t offer me any radiotherapy or chemo because I am not strong enough surely that’s not right I’m trying my best to get myself weller everything is such a struggle xx

[Caspiana in reply to carolg1]

My dearest carolg1 ,

I know what you mean, just when it seems we are rock bottom something else creeps up. Please keep us updated Carol. I wish I could say something constructive and wise, but all I can say is I am thinking of you and hope things get better.

Much love to you.

Cas xx 🌞🐞🐝

[pepparuby1]

I don’t know about these tablets - but I do know the long cold wet winter seems to go on forever in the UK which after a while just becomes tiresome and I am more likely to get chest infections in the winter!!! Having said this - I’ve been very lucky this year - only one chest infection which was after Boxing Day - I took my antibiotics but not steroids as it Disney seem to need them - also the five or seven day steroids arnt great for me.

I do hope you feel better soon x

[carolg1 in reply to pepparuby1]

Thanks peppy xx

[Hidden]

I have only used Chloramphenicol as eye drops, to clear infection there. But I've never heard them used as treatment for chest infection.

[OAP27]

These tablets were used before the development of broad spectrum antibiotics and then banned in the USA. For a small number of people they have serious side effects - google it and you’ll be able to see what they say. Can I ask what region of the U.K. you’re in and which hospital you go to? Ok if you’d rather not say.

[carolg1 in reply to OAP27]

Hi I live in South Yorkshire I think my doc gave them to me because he’d run out of ideas , what nasty side effects did they have because I’m so low at the moment think I would develop everything thanks for responding xx

[OAP27 in reply to carolg1]

Can’t remember but it was only a minute number who might develop side effects but they have to cite the possibilities on the leaflet I think. Good luck, let us know if they make a difference!

[Bella395]

OH had them about one or two years ago for bronchiectasis. Still has some in the drawer. He was given them by his consultant because of other antibiotics not working. They are an old fashioned antibiotic, rarely used these days. Strangely enough they worked very well the first time OH had them but not so well when used on later infections. I got the feeling that the consultant prescribed them because he was struggling to know what to do but could be wrong. Hope the drug works for you. Concentrate on getting that gunge up from your lungs. Use a Flutter, PEP device, active cycle breathing technique, autogenic drainage or saline nebules - anything that helps you get the stuff up.

[carolg1 in reply to Bella395]

Hi Bella I think you hit the nail on the head he didn’t know what to give me next to try . Is it normal for bronchiectasis patients to do lung emptying four and five hours a day , I’m so confused with it all xx

[Bella395]

TBH I don’t know what normal bronchiectasis is and I share your confusion. However, having seen OH trying to clear his lungs for hours on end, five hours must leave you feeling exhausted and is excessive. Are you on carbocysteine? Do you have a nebulizer? Have you seen a physiotherapist? Have you tried any devices? Get as much information as you can and try different things. Clearance is key to preventing infection.

OH is trialling a smart vest soon so I am keeping fingers crossed that it will help. If he could just clear his lungs within about half an hour, two or three times a day, that would be acceptable. At the moment it can take hours, particularly in the morning.

[carolg1 in reply to Bella395]

Hi Bella, I’m definitely on the same page as you I could cope say if it was three times a day for half hour but it’s such a struggle so much of it my question is why so much if no infection, sometimes I’m at it 2 to 4 hours it’s gross.. can you let me know if the vest helps I’ve tried all the others they help a little but not enough , thanks for your help x

[Bella395]

Well, I am not getting my hopes up too much about the smart vest. He wanted to try it so I contacted the rep. She said that he meets the criteria but cannot have the trial without physio support. They’ve never used one so we are all meeting up. If it works we will have to buy it but the company does terms to pay for it over time.

Meanwhile, I am trying to help him learn autogenic drainage which he says does help. Currently he is on Tobramycin nebules for pseudomonas and is still coughing up phlegm but not as much so maybe the infection is clearing. It didn’t respond to Ciprofloxacin.

I can only think that your lungs are inflamed and that is why you are producing so much phlegm. Do you have asthma as well? OH does and is steroid dependent.

Bronchiectasis is a horrible disease, made worse by the fact that so many health professionals don’t appear to be interested or understand it. We have a respiratory unit and the nursing staff are great but I look back and see gaps in the care and treatment. Things like not addressing the clearance problem properly. I think they are more used to COPD/emphysema.

I hate this disease but I see it as a battle and it is not going to get the better of him. He has the same attitude but it is tough going.

I will try to remember to post back when the trial has started (week after next). If I forget, please reply to the thread and I will get the notification to jog my memory.

[carolg1 in reply to Bella395]

Thanks for all that Bella I agree with every word you say they have very little knowledge on bronchiectasis it is so disabilitating beyond belief some days..., hope you remember to let me know how you get on xxx

[Bella395]

He doesn't start the trial until the middle of next week but I shall certainly try to get back to you when he has given it a few days. Heard today that the Tobi has cleared the pseudo but he is still congested and crackling. It could well be back when the course of Tobi is finished unless he can shift this gunge from his lungs. We are trying to get him an appointment with a consultant who specializes in bronchiectasis. Don't know if it will help but best to try.

[carolg1 in reply to Bella395]

Hi Bella don’t know where about you are from but the bronchiectasis specialist seem to be at royal Brompton in London I live in south York’s but if needs must I will travel a bit good luck x

[Bella395]

Thank you for good wishes. I don’t think I could cope with London, never mind him! LOL He was under the care of Northern General for many years when he just had asthma. Hoping to go back to see a consultant who specialises in bronchiectasis.

[carolg1 in reply to Bella395]

Hi bella I am a patient at northern general but not for the bronchiectasis it’s for my gastro issue do you know the name of the bronchiectasis specialist he may be seeing because if he’s good it’s a lot closer to me than London and I can ask to be referred, thanks Bella xx

[Bella395]

I don't know yet - there was a clerical error and he was referred to the wrong hospital so they are having to send another referral. Check the NGH website as there are a number of consultants in the respiratory team. Dr Pirzada is flagged up as having a special interest in bronchiectasis but I do not yet know who OH will see. I hope it won't be long but I will chase it up.