Bronchiectasis

[syobelee]

Hi! What is your protocol for Bronchiectasis? I use relvar , spiriva and nebulize 3 percent sodium chloride. Are steroids bad for Bronchiectasis?

[Bkin]

The treatment generally is tailored to suit the individual patient (for all lung / breathing issues) for times when the condition is stable and for when it has become unstable (eg lung infections)

Inhaled steroids are prescribed to be used daily for many lung patients including those with bronchiectasis.

Oral steroids are prescribed for all lung patients including those with bronchiectasis mainly at a time the patient has a lung infection. Some lung patients are prescribed these at a lower maintenance dose daily (usually for those patients with severely damaged lungs who are prone to frequent infections).

Yes steroids can be harmful for any one, healthy or damaged lung if they are used excessively and not as they were intended to be used by prescription. If they are used long term on a daily basis at high doses.

Oral steroids can also help prevent further health complications developing if used properly as prescribed. In UK they would only be prescribed where there was a need by a qualified medical professional - usually a GP or Specialising Consultant.

[syobelee in reply to Bkin]

Thank you! Very helpful.

[Hidden]

Oral steroids are not a standard treatment for bronchiectasis unless the patient also has copd or asthma with it. They tend to mask bacterialexacerbations because of the affect which they have on breathlessness. You can check this by googling the guidelines for bronchiectasis treatment. I have had bronchiectasis for 67 years and have never had or needed them. My consultant co wrote the guidelines.

The most important treatment is self management- emptying your lungs of the fluid in which bacteria can multiply. As you nebulise 3% saline I presume that this helps to loosen the mucus for you to do this.

Antibiotic treatment, orally, nebulised or by IV is used for exacerbations. Some people with bronchiectasis benefit from an inhaler. I have Fostair twice a day.

You need a consultant who is a bronchiectasis specialist. GPs know nothing about bronchiectasis and general respiratory consultants very little more.They do not have the training or experience in a very complex condition and tend to treat it the same as copd, which it is not. The GP needs the advice of the specialist as to which drugs to give you, the correct doses and length of course. Also, some antibiotic treatment has to be done or supplied through the hospital.

Find out if your consultant is a bronch specialist. If not, find one in your area. They are usually at big teaching hospitals. Take the name to your GP and insist on a referral.

I hope that this helped a bit.

[syobelee in reply to Hidden]

Thank you so much. Very helpful.

[hypercat54 in reply to syobelee]

Hi Hidden is our oracle in all things bronchiectasis related so hers is the advice to listen too. Most of us here have copd which is much more common and what applies to us won't necessarily work for you. x

[Bkin]

Please be aware syobelee, generally no one here is appointment by BLF or HU, (except **as below)

Everyone is speaking from their own personal experience and understanding. What may be the case with one individual doesn't mean that applies across the board to everyone with the same diagnosis.

As I said previously the treatment generally is tailored to suit the individual patient, who may or may not have more than Bronchiectasis going on.

Self education goes a long way to understanding the health issue and the medications we may be prescribed, in addition to what our own medical team can advise.

BLF information pages on Bronchiectasis: blf.org.uk/search/site/Bron...

** healthunlocked.com/blf/memb...

[hypercat54 in reply to Bkin]

Do you have Bronchiectasis Bkin?

[Bkin in reply to hypercat54]

yes I do

[Hidden]

I was talking solely about bronchiectasis as syobelee had asked. I have no opinion on steroids.

[Hidden]

Hidden is quite right. Neither inhaled nor oral steroids are routinely recommended in the treatment of bronchiectasis alone, unless you also have asthma, ABPA, COPD or inflammatory bowel disease. Here’s a link to the British Thoracic Society’s current guidelines

thorax.bmj.com/content/74/S...

Unfortunately I have severe asthma & ABPA along with bronchiectasis, so I use inhaled corticosteroids all the time & frequently need prednisone. Wish I didn’t because they have so many undesirable side effects

[hypercat54 in reply to Hidden]

Well said Hanne. Only those with bronch like you and littlepom are qualified to give advice on it. Anyone else is just speculating and could give incorrect information. x

[Hidden in reply to hypercat54]

Thanks. And by the same token, I don’t give advice about COPD! I leave that to those who have experience of it

[hypercat54 in reply to Hidden]

Yes. I do the same. I have asthma and copd so do have some knowledge and experience of it. x

[Bkin in reply to hypercat54]

qualified ? - you mean experience of the illness surely. I don't consider myself qualified in any of my years of experience managing my illnesses, do you - because you have COPD feel you are qualified?

Besides this is not a competition we are all only sharing experience of our own situation.

[Patk1]

Howre u finding yr treatments? Hope they help.ive q severe bronchiectasis and other multiple complex lung diseases.like others say,ea persons regime is individually tailored to them.i have cicleside,fostair&salbutamol inhslers,plus salbutamol and 9% hypertronic saline nebulisers,plus numerous drugs.i take steroids when i have an infection and flare up.my advice is,as soon as u feel yr going off,ring yr dr

[moderator_AandLUK Administrator Volunteer]

Just for clarification. This forum exists for the discussion of lung conditions and the polite expression of opinions; the guidelines don't allow for any claims of expertise because they cannot be checked, so the assumption should always be that any statements are opinion based on an individual's experience (which might extend to their experience of someone else's condition).

References to official websites on the subject (such as those provide by Bkin and Hanne62) are always helpful.

Thanks for your understanding

[Hidden in reply to moderator_AandLUK]

Also for clarification. I do not and have never, claimed to have professional expertise in bronchiectasis. Nor have I ever claimed to be the only person on this forum with knowledge of its management.

I do however, have a lifetime of managing my condition. I have also learned a great deal of medical information on it due to 30 years of involvement with the consultant who brought bronchiectasis to the notice of the respiratory community in the UK US and worldwide. His student and my consultant for the last fifteen years is co chairman of the British Thoracic Society. In common with her predecessor she shares her expertise with her patients because they both believe that a knowledge of the condition helps in its management. I have also studied many academically and medically accepted publications on it.

My experience of the training of many medics in bronchiectasis, both through contact with them as a patient and acting as a patient for examinations from first year student to consultant level is unfortunately that it is generally abysmal.

The nature of the questions from many on this forum prove that many need help to source a correct diagnosis and expert consultant supervision. The woeful lack of expertise, especially at GP level leaves many confused, frightened and not knowing which way to turn.

It is my aim to help others to cope with the problems which this complex and difficult condition cause.

If you read my posts and answers you will see that I never quote ‘rules’ but rather seek to support others in their choices.

There are no rules with bronchiectasis. We are all different. We all have our good days and bad days. I can tell you that being attacked for helping others is very upsetting.

There are several other members on this forum who have similar lengthy experience of living with the bug boggart within and their help is also appreciated by many, including myself.

[Bkin in reply to Hidden]

There are many members here with bronchiectasis that can also offer information based on their own experiences.

No one here is the only authority to offer guidance based on their own experiences and self learn knowledge.

It is good new members can have a variety of information, it does give them a broader understanding of things.

Have a good day littlepom

[skischool in reply to Hidden]

Very well penned,although you have no medical qualification your knowledge on the subject raised puts many of the so called experts to shame LP.

[Hidden in reply to skischool]

Thank you ski's and the scruffy one.x

[Jools7770 in reply to Hidden]

I would like to say that the information you gave me last year was very encouraging and helpful. I have learnt a lot and have only been diagnosed two years. As you say, we get to know our own bodies and how to manage our own condition. However, I was very pleased to communicate with you as you have first hand experience. Thank you Little Pom x

[Hidden in reply to Jools7770]

Thank you for your very kind words. If I can help others to get by it means a lot. x