Newly diagnosed
Posted , 6 users are following.
Hi everyone. I usually "hang out" on the Polymyalgia and Giant Cell Arteritis board, but was diagnosed with bronchiectasis early December. I've also since been told I have pseudomonas.
It looks like the bronchiectasis is caused by my compromised immune system, having been on high doses of prednisolone (steroids) for over 2 years with Giant Cell Arteritis. And having had several serious chest infections, including pneumonia in August.
I had a bronchoscopy early December because of a permanent dry cough, extreme tiredness and breathlessness.
I was put on Carbosisteine and turbo inhaler 200/6 and told that I would eventually see a physiotherapist, but that it would be a while due to waiting list.
Although they found the pseudomonas during the bronchoscopy, I was only told of it at my follow up appointment early January. I had spent the whole of December battling a chest infection, been given antibiotics by my GP and refused a second dose when I still felt ill, as she said I needed to save them for when I next had a really bad chest infection.
When I saw the respiratory consultant at the follow up, he asked how I'd been. I told him of the infection and he, almost gleefully, told me that the antibiotics prescribed would not have done anything to help, as the pseudomonas is resistant to most antibiotics. He then prescribed the correct ones. Of course I should have asked why I wasn't told immediately about the pseudomonas. It would have saved me a month of feeling so unwell, but at the time, I was too busy concentrating on what he was telling me and I also felt that he was rushing the consultation.
I hardly cough up any phlemgh. The inhaler has helped with my tight chest.
It's difficult for me to distinguish between feeling fatigued and generally unwell due to bronchiectasis/pseudomonas and my autoimmune illness of GCA.
Is the pseudomonas something that stays in your lungs and the antibiotics just dampen it down?
I'm due to have a spinal biopsy end of February and because it's a general anaesthetic, the doctor performing it wants to make sure I'm free of any chest infections. In fact, it was cancelled at the very last moment 10 days ago when they found out I had the infection.
It's all very new to me, so I would really appreciate any advice you can give me. Thank you.
1 like, 8 replies
Operalyn Susanne_M_UK
Posted
Sounds like you've been really poorly and I am sorry. My lungs have been colonised by pseudomonas for years and it is always present when I have a sputum test. Very few antibiotics are useful against it but I take ciprofloxacin in high dose when I get an infection and it is pretty effective. Other antibiotics which can only be taken intravenously are also effective I believe. I manage to live a pretty normal life with it but for get about four to six chest infections a year and in a bad year more. I have the opposite to you - I have a very productive cough which means I do physiotherapy every day to get the rubbish off my lungs.
I am not sure this is helpful because you have problems I do not but just want to reassure you that life with pseudomonas is possible.
I hope you get all the help you need. Kind regards
Limmen Susanne_M_UK
Posted
Sorry to hear you have been so unwell. It is quite common to have pseudomonas in your lungs. It seems to flare up when your immune system is low. The doctor would normally request a sputem test when you have a chest infection to see what antibiotics the infection is sensitive to. Sometimes Ciprofloxacin is enough, but a worse infection usually needs something stronger like Gentamicen. But it is not a drug you would want to take if you did not really need it.
I find the best thing to keep well is to strengthen your immune system the best way you can. I go to a Naturopath for a mixture made especially for that purpose.
I wish you well in the future.
Regards,
Max
tabatha84296 Limmen
Posted
Hi, Max - Tabatha here with a question about your naturopath visit which you have referred to before - are you getting Vitamin IVs from him or "C" IVs or just get his recommendations for vitamins? You've got me wondering what his 'mixture' is to build the immune system.
Thanks,
Tabatha
pinksnugsy Susanne_M_UK
Posted
Hi there
I also have pseudamonus and have done for many years. It's always in my sputum samples but when the levels are moderate to high I go on intravenous anti biotics. I take meropenum (1g) & ceftazadine (2g) 3 times a day for at least 14 days. When I'm really poorly I have 4g Tazocin & 1g meropenum 3 times a day. When I'm not on ivs I nebulise anti biotics 2 times a day plus I take 7% hypertonic saline along with carbosistines. It took my years to find a good chest consultant I don't even go to the docs when I'm not well I'm able to ring my consultant & see her pretty much straight away & inevitably I need ivs. I send sputum samples off regularly to see how things are and I'm lucky that I'm able to do my own ivs at home as I've had bronchiectasis since I was a little girl. I'm own 48 so I'm an expert now lol!
Hope you find a good chest consultant as this is key to help you manage it.
Good luck.
Rach
Susanne_M_UK
Posted
Thank you very much for your replies, Operalyn, Limmen and pinksnugsy. It's really useful to hear other people's stories.
So far, I'm not impressed with my respiratory team, simply because they didn't think it to was necessary to tell me I had pseudomonas until I saw them a month after they discovered it, and knowing I have a weak immune system.
My immune system has been lowered by the steroids I take, as having an autoimmune illness means that my immune system doesn't recognise my body as "self" and needs to be kept low to counter the effects of the illness. Weird what the body gets up to!
I was put on a week's dose of ciprofloxacin. I'll see the respiratory team again early March with a CT scan before then.
pinksnugsy Susanne_M_UK
Posted
I was in hospital once with a lady that has exactly the same as you. She also had very little phlegm but gets breathless & tired. Pseudamonus can be very draining. I can't stress enough how important it is to have a good team of people around you from your respiratory nurse to your consultant. If I was you I would send samples off if you can cough anything up just so you now what the pseudamonus levels are like. There are tablets you can take on a daily basis to keep things on a level.
It's all about trial & error to see what suits you.
Take care ?
Susanne_M_UK pinksnugsy
Posted
I'm seeing my rheumatologist tomorrow, she looks after my autoimmune illness and is the one who requested all these different investigations I'm having, as she thought there might be something else not right. Maybe if I ask if she will contact the respiratory team to ask to be kept in the loop, it will help and keep them on their toes. The trouble is they are based at two different health care trusts and don't even share the same IT systems. I'm currently under 4 different consultants at two different hospitals.
Two years ago I was fit and healthy and working full time. Frightening how quickly things can change!
Operalyn Susanne_M_UK
Posted