Bronchiectasis

[GinnyMa]

I am new to BLF. Anyone on this site with bronchiectasis? Wondering if you use an inhaler.

[RoadRunner44]

Hello GinnyMa. I and many others on this forum suffer with bronc hiectasis. I nebulize colomycin daily but don't have an inhaler. Why not tell us a little more about your problems so that we can get to know you better. I will try and answer any questions you may have and can guarantee others here will also be happy to do so too. Best wishes, chrys

[friendly in reply to RoadRunner44]

I use a ventolin inhaler but use a spacer with it as it makes a huge difference, do not think I would be here now if I could not use it, have been using it for 40 years for bronchiectasis and before that I used ventolin tablets, I also use spiromax at the moment, have not been on it long, my consultant is using me as a guinea pig at the moment as now I am getting older things are not getting any better so he is doing his best to find different medication for me to try out but I think there are not many things left to try that I have not already had. keep well Sylvia.

[cofdrop-UK in reply to friendly]

Hi friendly

What have you tried already, apart from the inhalers.

Cx

[friendly in reply to cofdrop-UK]

well now you are asking, over the years numerous antibiotics that I have become immune to or they some that disagreed with me and different corticosteroids which did not help, as I said before my salbutamol ventolin inhaler is the only thing that helps me cough up the rubbish in my lungs which is the main importance of helping when you have bronchiectasis plus the fact I am a great believer in getting as much exercise as possible.

[GinnyMa in reply to RoadRunner44]

I was diagnosed over 20 years ago and free of symptoms. Last summer Pulmonologist put me on Breo inhaler and all was good for a month. Then I had a relapse, was sick, diagnosed with pneumnia, and put on Augmentin. A week after getting off the antibiotic, I had another relapse and was put in the hospital, and prescribed Levaquin. Got better for 2 weeks, and another relapse. I kept being reassured that the inhaler was not the problem, even though side effects listed it as such. Now this was not a coincidence to me anymore, but cause and effect and I told them no more Breo. My PC and lung doc consulted and agreed that the steroid was irritating my lungs as it happens to some people. Now they are looking for an inhaler without steroids. Now, after9 weeks of feeling sick, my wish is no inhaler.

[RoadRunner44 in reply to GinnyMa]

Are you on anything at the moment Ginnyma? You sound pretty fed up. Do you have good family and friends to talk to when you are a bit down? Chrys

[GinnyMa in reply to RoadRunner44]

Doc put in a prescription for Serevent, (steroid-free) and druggist couldn't locate any. Now nothing for the bronchiectasis for the past 5 days........just off Prednisone for GCA after 4 years! I am of the mind that the lesss drugs, the better. Docs don't like that.

[RoadRunner44 in reply to GinnyMa]

I don't know why but the pharmacist tells me that certain drugs just aren't available. I have been waiting for something my doctor precribed for me and its now over three months and still no sign of it. What is going on, do you know?

[HungryHufflepuff in reply to GinnyMa]

Hello and welcome 😊 I don't have bronchiactasis but I did have serevent inhaler for several years and it was wonderful. Then it was taken away and I've had an ever changing series of inhalers since then. At my appointment two weeks ago I asked about getting serevent back again and was told it's gone. I'm in the UK and I know you're in the US but it seems globally this inhaler is being phased out which is really too bad because it was the only thing that worked for me. I hope things start to improve for you soon 🤞

[GinnyMa in reply to HungryHufflepuff]

Thank you for the information. Since Serevent is also being phased out in the UK, it must not have been profitable for the drug company or give bad side effects. Too bad, since it helped you and I suspect it might have helped me as it had no steroids. All the current inhalers seem to contain two drugs, one of which is a steroid. Love your name!

[Hidden in reply to GinnyMa]

😳😢❤️

[Hidden]

Hello GinnyMa. There are quite a few of us on here who have bronchiectasis and you will probably find that we all have different treatment according to our needs. I had no inhalers from diagnosis in 1953 to 2007. Then I had long acting atrovent and fostair which has an element of steroid in it. Inhalers are not standard treatment for bronchs and I don't think that mine help me in the way that they do those with copd. I think the steroid does keep the inflammation down and lessens exacerbations in me. I hope that helped.

[Jaybird19]

I was diagnosed as bronchiectasis by Xray used ipatrophium and salbutamol inhalers for years then clenil was introduced as well.

I use spacers for each ( bthis gives you more of the inhaler content)

I rarely produce sputum but my breathing is abysmal. I am aiways out of breath and it takes 20 minutes t. Sitting still get it to near normal.

When you use your inhaler clean your teeth and gargle afterwards. Replace tooth brush after 3 months. Some people say use the brush after 20 minutes to prevent steroid harming your teeth and gums. I think if you do that you are then ingesting the stray steroid that maybe around.

Do read instructions on the spacer and inhalers.

Good luck

[Hidden in reply to Jaybird19]

I think you should read my last reply to GinnyMa. This may apply to you too. Were you not diagnosed by ct scan?

[Jaybird19 in reply to Hidden]

I have read your email to Ginny Ma

My problems started with a lung abscess 0ver 30 yrs ago so memory fails me regarding mri. I have had a number of MRI scans for various reasons.one of my head soon after the lung abscess but do not remember others. So i was diagnosed as having " industrial asthma" after that, and saw the my hospital resp specialist every year until he retired. His successor then told me it was bronchiectasis. I have had xrays quite a lot and ct scans too so it looks like the diagnosis was based on the lung abscess. I was very ill with that and my breathing has become worse over the years not helped by working with chemicals in hospital and Public Health lab , working with tb specimens and growing fungi cultures in open petri dishes( now not allowed) many techniques that have been banned for safety reasons after years in use . This means i have been exposed to a number of hazards. I also have had two PE since 2008 due to broken leg and damaged veins .

My knowledge of bronchiectasis is limited . This i have found out since i joined the BLF forum. I had thought that there are people with bronchiectasis who do not produce sputum and those whose main problem is like me the breathing which has become steadily worse over the years. I have produced soft green purulent sputum when i have had an infection .As a micro biologist i have seen and worked with many sputum specimens and am used to the appearance. (The appearance was part of the final report going out to doctor)

So now you have told me this I have to find a specialist with the specific knowledge. My present resp. consultant cancelled my yearly appointment due oct7th and has ìgnored requests from me and my doctor for an appointment.I have had to wait a year to get accepted on breathe easy course too.

So i have given you all the details that I can remember.

I have read your comments and you obviously know a lot so i value your oplnlon .

what do you think?

[Hidden in reply to Jaybird19]

Thankyou for such a detailed description of your troubles. You have had ct scans and so somebody who knew what they were looking at should have recognised bronch.

However, You have been exposed to so many different potentially harmful agents over the years that you could be struggling with several types of damage at once. I suspect that there are consultants who throw the patient back on the GP because they don't know what to do with them. It happens more than you think.

So, this is your opportunity. Look for a good bronchiectasis specialist on the internet. Close enough for you to access. They are usually at big teaching hospitsl. It must be a bronch expert not just a genersl respiratory consultant.

Take the nsme to your GP. Get your GP on your side by stating the obvious, that the last consultant has not been treating you.effectively and has messed you both about. As your health is paramount you both need the help and advice of a true bronch specialist. If you have another condition with the bronch.their tests and their knowledge will tell them and you can have suitable treatment for that alongside.

You deserve to feel better than this and your GP deserves better advice to support you.

Good luck. Take control.

[Jaybird19 in reply to Hidden]

Thank you . Sorry to be so detailed but it is all as you see, of possible significance. I had already found Wythenshawe at Manchester is the NW Centre and not too far. Next step get GP appointment! A major effort these days.

I have learnt so much since i found this forum, thank you again

[Hidden in reply to Jaybird19]

Thankyou for the details. It is only through learning those that we can try to help you. Bronchiectasis and its treatment is very complex and you have other issues as well. I don’t know much about Wythenshaw except that it is a transplant centre. I hope that you find a good specialist to look after you. Do keep us posted.

[tbeth]

I have bronchiectasis and use the Symbicort inhaler in addition to other neubulized medication. I prefer the Dulera inhaler but my insurance does not want to pay for it. The doctor prescribed a smartvest also.

[cofdrop-UK]

Hi GinnyMa

I do use inhalers but I also have asthma. I have a Terbutaline inhaler (a bronchodiator similar to Ventolin) and Alvesco (a steroid inhaler). I also nebulise Terbutaline, followed by nebulised hypertonic saline, followed by physio twice a day.

Many folks with bronchiectasis nebulise antibiotics. Unfortunatelly I can’t do this as I am intolerant to the ones I have tried.

Cx

[Hidden]

I hate to throw a spanner in the works but having read all of your replies I very much doubt that you have bronchiectasis at all. The only way that it can be diagnosed is by ct scan. Xrays simply do not show it properly. Your symptoms are far more in line with asthma or copd or some other condition.

With bronchiectasis the main problem is is infection which grows in the fluid which collects in the damaged airways and lungs. You say you have no mucus.

Inhalers are not the front line treatment for bronch but they are for copd asthma and other conditions. So few doctors understand bronchiectasis and actually your doctors seem to have been treating you for one of these other conditions rather than bronch. If you have been misdiagnosed for all of these years it needs to be put right.

I gather that you are in the US because of your use of the term pulmonologist. I do suggest that you find a different DR to the ones whom you have been using, preferably one who specialises in bronchiectasis and start again. A bronch expert will also recognise and diagnose the other conditions. You need a proper diagnosis and as I said this can only be done by ct scan.

[GinnyMa in reply to Hidden]

Ifyou reread my entry, I never said how I was diagnosed or that I had no mucus. I actually had full lung function tests and did have many ct scans. I trust the diagnosis.

[Hidden in reply to GinnyMa]

I was trying to help you at 3am and unfortunately got mixed up with spmeone else’s diagnosis. I still think that treating bronch with inhalers is evidently not helping you and you asked the question.

[Hidden in reply to GinnyMa]

I suggest that you google British Thoracic Society guidelines for treatment of bronchiectasis.

[Joinery123]

Hi. I have bronchiectasis and use seretide - a combination inhaler. What are you using?

[wheezyof]

I have bronchiectasis and bronchiolitis obliterans.

I have 3 inhalers : ventolin, fostair and spiriver respimat.

I take azithromycine 3x's a week

I use a flutter and breathing exercise to clear the mucus from my lungs.

I have stronger antibiotics to take if I have a flare up.

I have the flu jab every year and had the pneumonia jab 4 years ago.

We are all different. Many people benefit from oral steroids and mucus loosening drugs, however I react badly to both of these.

I wish you as well as you can be xx

[GinnyMa in reply to wheezyof]

Thank you. Wish you well also!

[Izb1]

Hi GinnyMa and welcome to the site. I was treated for asthma for years before finding I had bronchiectasis. I told the doctor so many times the inhalers were making me worse and just not working, now I know why. I find that once I get an infection it is terrible to get rid of or keep under control as I get sinus problems. I do use Seretide when things are building which sometimes helps but cant use it everyday as it makes me worse. I clear my lungs everyday and use a nasal wash twice a day. I have a healthy diet and keep away from processed food. I take a few vitamins and use a nasal guard when going out. Hope this helps. Irene x

[GinnyMa in reply to Izb1]

Sounds like the steroid component is not good for you also. I also use a flutter valve, eat well, get my flu shot, pneumonia shot, and take vitamin D. Before the past nine terrible weeks, I walked daily for an hour and I think it was keeping me, and my lungs, as well as can be expected for a 78 year old woman.

[Izb1 in reply to GinnyMa]

Hi GinnyMa, I dont think inhalers work well for bronchiectasis, most open up the airways and as you know with this disease your airways are already wide open. I dont like steroids of any kind and will only use them when it really is the only option. I also think you can become dependant on inhalers (only my opinion) . I think you have to do whats right for you, finding whats right is the battle. Sounds like you are ontop of things. Wish you all the best x

[Tinker26]

My consultant took me off the steroid inhaler as I have only bronchiectasis as he said it encourages more bugs and only use ventolin due to allergies xx

[GinnyMa in reply to Tinker26]

That is very interesting! After 9 weeks of being sick, I agree with your consultant. I think that Ventolin is same as albuterol????? My doc mentioned it as an alternative, but said it is only good for about 4 hours. Do you use it continuously or just as needed?

[Tinker26 in reply to GinnyMa]

Just before I nebulise my daily saline or on damp days ,hope you get better soon xx

[GinnyMa in reply to Tinker26]

Thank you. I wish you good health also! Hopefully, some day, they will find a drug specifically for bronchiectasis. It is considered a "rare disease" and our doctors are trying to piece together drugs that treat other diseases in the hopes they might help us.

[Cateran]

Hello GinnyMa,

Can I recommend that you get (free from CHSS or BLF)the booklet :"Living With Bronchiectasis" which will inform you about much that you need to know, especially the Scottish booklet, which has recently been updated (2018). I had some input into the revision and can vouch for its veracity. Please trust many of these replies above which come from articulate and knowledgeable experience of actual sufferers and patients with bronchiectasis and with inhalers.

[Hidden]

Hi there, I use Salamol, Fostair, Braltas and nebulise Saline. Also take Azithromycin 3 times a week and use a salt pipe. Also have Asthma. Currently using my rescue meds but not coughing up any sputum. 😒 Today I vomited my dinner along with phlemgh. Sorry for too much information.