New Survey

[Katie_ALUK]

Do you have bronchiectasis?

We’re working with a researcher from the University of Edinburgh who is looking into the use of intravenous (IV) antibiotics to treat bronchiectasis. The research will be the first of its kind and will provide evidence for guidelines on how long IV antibiotics should be used as treatment for bronchiectasis. Now we need to hear from you to better understand what a ‘good’ outcome of the trial would be. You can let us know your thoughts in our new snap survey here.

auk2016.typeform.com/to/C0q...

The Helpline Team

[Hidden]

I have completed the survey. However, I am sure that other people like me with lifelong bronchiectasis and experience of IV antibiotics would tell the researchers that seven days IV is not sufficient in bronchiectasis.

[cofdrop-UK in reply to Hidden]

Just completed and wished I hadn’t bothered. Little to no patient imput required and assumptions made eg. that IVs appeared to only mean you are hosptalised. Cx

[Hidden in reply to cofdrop-UK]

Exactly. Why do they waste time and money doing research into things which are already old hat rather than finding something that will really help us and ASK THE PATIENT!

[cofdrop-UK]

Thank you Katie for the opportunity for those who this has the most impact on to comment. I have vague recollections, as it was quite a while ago now of taking part in an abs 7-14 days questionnaire, which I thought was requested by James, but I may be wrong. I haven’t looked at the link yet but will complete at some time.

As it happens I am attending OP for my first dose tomorrow of Mero and will do the remaining IVs at home myself. I find this incredibly interesting and important as I can’t personally tolerate the only effective oral for pseudo, nor can I tolerate any of the prophylactic meds. I think we are resorting to the only option, the old regular top ups. At least I have a port.

Cx

Apologies Katie for some reason I called you Kelly. Now amended.🤭x

[CDPO16 in reply to cofdrop-UK]

Best wishes for tomorrow cof xx

[cofdrop-UK in reply to CDPO16]

Thank you lovely. Xxx

[Hidden in reply to cofdrop-UK]

Unfortunately this research seems to be interested in whether 7 days IV is as good for bronch as 14 days and not on the benefits of regular top ups, which I think wd be a better question.I hope that the mero does you good. I am having a nebulused trial of mero on thurs. I think we both know where that will eventually end up.

[CDPO16 in reply to Hidden]

Best wishes to you too LP xx

[Hidden in reply to CDPO16]

Thankyou so much. X

[cofdrop-UK]

I hope nebbed Mero works well for you. It would be a great relief.

I guessed from your post that this research was re 7-14 days, which is the same as I recall as the statements I believe James required, although it may not have been done through BLF, more likely at that time to have been asked from the patient panel through ELF.

Cx

[Hidden in reply to cofdrop-UK]

I suspect that the mero is going to be the same as the others. It will seem to work but after ten days it willbegin to make me breathless and wheezy. Oh well 🤞🏻

[cofdrop-UK in reply to Hidden]

That’s what nebbed abs do to me. Fine at assessments gradually be oming more breathless - I put it down to the asthma but you don’t have asthma. Colomycin put me in 5*. I would still have had a crack at inhaled cipro though had it worked out after all the rigmarole with that. Let’s hope this one bucks the trend for you. Xx

[Pamieann]

Yes I do have Broncexstatis. I had a bad time for a couple of years until a Hospital Specialist recommended IV Antibiotics. For the first time of repeated chest and Pneumonia infections, I was put on a two week course. I have only had one bout of Pneumonia in 10 years. It works.

[YummyBear]

Hi Katie, I saw this survey a little too late to participate. Do we get to see the final results?I am finding Bronchiectasis rather difficult to grasp what to expect. I was newly diagnosed in May 2020, by means of me enquiring at my surgery what the outcome of the HR CT chest scan I had in March 2020. The GP searched the Hospital system and found a brief report which said 'mild bronchietasis'. After having Whooping Cough in 1982, whenever I had a cold, I would develop a lingering cough, treated with Prednisolone or puffers. Some 37 years later a Locum thought it best I get checked out with a Respiratiry Consultant! After the diagnosis in May 2020, I received a letter in Sept.2020 detailing the medication, rescue packs of a/b, followed by a Zoom call from the Chest Clinic. The specialist went through breathing excercises. Alas, I still dont know what to expect; there was no mention of a follow-up or if I should be checked out annually. I've had 2 flare-ups this year and took Amoxicillin. I found the experience quite alarming. How would I find out what to do to help myself: should I contact the Chest Clinic? Many thanks