Any COPD clinical trials near Stockport?

[Wotnoair41]

I have Bronchiectasis, which comes under the umbrella of COPD. I have an electric nebulizer on prescription, which uses a saline solution, but lately it is becoming less effective. I've also tried a "Flutter"with mixed results. I had to buy that myself for £50!!! I am willing to go on any clinical trials for COPD if anyone knows if there are any running in my area (Stockport).

[mrsmummy]

Hi, bronchiectasis is not COPD. The COPD umbrella covers emphysema and chronic bronchitis, which are obstructive lung diseases, and occurs when the lungs become inflamed and damaged and the airways are narrowed. Bronchiectasis is a restrictive lung disease where the airways of the lungs become abnormally widened leading to a build-up of excess mucus that can make the lungs more vulnerable to infection. Welcome to the forum.

[Wotnoair41 in reply to mrsmummy]

mrsmummy. I'm only quoting my GP when I say that Brochiectasis comes under the umbrella of COPD, which I suppose just about sums up how on the ball some GPS are! My current GP didn't even know what a Flutter was!

I definitely do have Bronchiectasis, as discovered when I had a bronchoscopy in 2003, but everytime I get a letter from the surgery for my anual lung function test, or anything related to my Bronchiectasis, it always refers to COPD.

Skischool. That link didn't work. I just get an error message.

Cofdrop-UK. Thanks for that. Most informative. I will definitely speak to my consultant about saline strength when next I see him ( hopefully in two months time). Mine is currently 0.9%. I'll also ask him about clinical trials.

One time, the pharmacist mistakenly gave me some boxes of Salbutamol mixed in with my saline nebs. I thought it might be worth trying, so I did. Wow! It really did loosen up my sputum, but made me feel a bit shaky. When I mentioned it to the pharmacist, he hastily asked me to bring the boxes back. I told my GP but she didn't seem interested other than to say that the pharmacist just made a mistake. It wasn't discussed either way as to whether Salbutamol would be better or worse for me, so it just sort of "went away". I used to have a great GP, but he left the practise and moved away, so, I'm left with my current one who just seems to be coasting and taking the money.

What is acapella? Also what are pseudomonas?

[cofdrop-UK in reply to Wotnoair41]

I am wondering if you use any inhalers. If and when you get assessed for hypertonic saline they would usually have you nebulise Salbutamol first to open up your airways. I nebulise Terbutaline (a different bronchodilator) prior to nebulising hypertonic. You GP doesn't sound very clued up.

An acapella is a PEP device, as is the flutter. As we are all different, some find one device helpful and ohters useless. That's why you need to be referred by your consultnt to a respiratory physiotherapist, to find what suits you best.

m.youtube.com/watch?v=b2Rht...(Not working as expected?)

blf.org.uk/support-for-you/...

erj.ersjournals.com/content...

Pseudomonas is a bacterium. See link above.

Love cx

[skischool]

mike again,just found this,its nhs choices link and particularly refers to your request.

nhs.uk/Conditions/Bronchiec....

cheers

[cofdrop-UK]

Hi Wotnoair and a very warm welcome to you. mm is quite right Bronchuiectasis does not come under the umbrella of copd but is a separate condition, although some GPs even don't seem to realise this.

Re the flutter - you should have had this on prescription, but again some GPs are not overly clued up on bronch quite often. With flutters and acapellas I have been given some over the years by the hospital, bought some myself and now get an acapella sent every 6 months.

What stength of saline are you nebulising. Most people with bronchiectasis find 'isotonic' 0.9% to be useless. There are higher strengths which are much more helpful at lung clearance 'hypertonic' which comes in strengths 3%, 6% and 7%. So you might want to ask about this with your consultant. I say consultant because you would have to have your first dose assessed as an outpatient to check you don't have a bronchospasm. Thereafter it would be prescribed by your GP.

With regard to clinical trials. There are clinical trials for inhaled antibiotics both specifically for cf and specifically for bronchiectasis, which are part of EMBARC. Usually you have to meet the criteria to take part in a trial and one of the criteria for these particular trials are that you are colonised with pseudomonas. There will usually be a consultant at your hospital, usually one within a cf unit or bronchiectasis service who is a Site Principal Investigator If you don't have one then you could inform your consultant you are interested and if you meet the criteria would s/he refer you to, or arrange to contact a consultant who is involved in the trials.

Good luck.

love cx

[inhaler1]

Hi, I have had Dr remove COPD from my records as Bronchietasis is not the same thing, it is more likened to Cystisis fibrosis and makes a big difference in treatment , there seem to be more specialists now taking an interest in treatments so hope you find a trial near your area.

[Christabella153]

Have only seen 1 in London

[cofdrop-UK]

dundee.ac.uk/news/2015/dund...

This is of course EU money but I am reliably informed there is funding cetainly until 2020. The consultants involved, not only from Europe but internationally, are very colaborative and proactive.

cx

[Hidden]

There are trials coming up at the QE in Birmingham for bronchiectasis

hypertonic saline

tobramycin via an inhalor rather than nebulised

anti inflammatory medication.

There may be trials at a hospital near you and of course, there is always the sticky matter of fitting the criteria.