Hi I’m having a nightmare with my bronchiectasis, I’ve had numerous exacerbations this year, use my rescue pack and prednisone when needed…cant remember being well in all honesty. I had HIB in April and given Levofloxacin as Doxycycline won’t shift my HIB. Think I had HIB in 2015, 2016, 2018 and 2023. During the pandemic I was largely indoors! Also on 6 months antibiotics Oct to Mar.
I’ve had pneumonia twice and been given Levofloxacin but there’s an added fly in the ointment …chronic sinus inflammation. Doctor (Gp)wasn’t being helpful but finally sent an expedite letter, I’m told I need an operation…again likely to be a very long wait. Nose is continuously green and infected, using a nasal wash out.
Apart from Bronchiectasis (since 2015) and asthma since I was 15 (now in my 60s) , I have hay fever, nasal drip, allergic rhinitis and numerous allergies ..waiting to see an allergist, there was talk that I needed to see an immunologist at one point.
Anyway, sorry for long post but my Respiratory Doctor/Nurse say I need to use a saline nebuliser. I was given one to try but came out in watery blisters around my hairline and an itchy rash. I thought it was the saline…but then when I tried using a mouth piece I got ulcers in my mouth! So I’m now thinking it’s what the mask is made of.
I’ve been given a Cirrus2 inter surgical Ecolite mask kit which I’m told is non pvc and non latex but lo and behold…blisters and rash in my hair……I’ve spoken to Intersurgical and the mask appears to be made from Polypropylene/TPE. Good old Google…I can be allergic to that material, causes exactly the symptoms I’m getting..I’ve had to stop using the nebuliser.
I can’t clear mucus easily ..tried breathing excercises and am on everything and his brother to get mucus clearance (first carbosistine and then Nacsys but still I vomit. On inhalers, montelukast, braltus too….tried a flutter as well.
Does anyone know please if there are ANY masks out there that may be ok, or has come across this before as I’m drawing an absolute blank when searching and my Respiratory Consultant seems stumped too!
Thanks for reading, any help or advice appreciated…I really am a half glass full person having survived cancer but this little beastie is proving a nuisance.
Penny x
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Gosh I don't know what to say (& that's unusual for me)! What I whole crock you're having to live with.The only thing I can think of is to try calling the helpline in the morning. 0300 555 2800 (I think) uk office hours. The professionals may have a suggestion for you.
I do hope you find help soon......I'm wondering if your respiratory consultant is a specialist in bronchiectasis which is what you need rather than a consultant who isn't.
PS have you tried Sterimar saline spray for the PND & rhinitis? I believe it's in a stainless steel container 🤞
UPDATE. So after much messing about trying to get the results of my sputum test from the hospital and involving my GP and Consultants secretaries (and being told I would have to wait for the results until after the Bank Holiday) it appears that I had Moraxella Cacarrhalis growing in my test. I had a lovely chat with a helpful GP and she wants me to double up my Doxycycline for 10 days and take another prednisolone if I think I need it. Anyone else had this bacteria? Still feeling very yuck, chest rattling. Will continue to hold off on the nebuliser until I see an allergist, but will be asking about immunology
I’m so sorry to hear about all that you’re going through. Let me tell you how I use saline to help clear my lungs. I was first given 7% saline, but it was too strong. It hurt my mouth, throat and lungs. I next tried 3%, but it wasn’t good for me either. Finally, I found 0.9% (on Amazon) and that has been great for me at thinning the mucus.
The nebulizer that I use is a small hand held device that is silent and fast at dispensing. I’ve never used a mask, but do use the mouthpiece. Since you can’t use either, if I were you, I’d just put the nebulizer near my mouth and inhale the mist. Your inhalation will draw the medication into your lungs. Not perfect, but I think it will work well enough for you, until you find a non allergenic mouth piece.
I originally bought the Philips Innospire Go and used it for 3 or 4 years. It recently stopped working, and I found that the Go had been discontinued. I haven’t found one yet to equal it. So unfortunately, I can’t give you a good recommendation.
Oh my word Penny what alot you have got going on. I can't offer any advice but do sympathise with your problems. I suffer with sinus problems and have bronchiectasis so know what a pain it is keeping everything at bay. KPacific seems to have given a good reply and hope this works for you x
Thanks everyone…took peege advice and phoned the Helpline..what a great service! ..am using Sterimar (thanks) Nurse thinks until I get my sinus operation it’s just a battle between infected nose and chest ..😄They have suggested that at the moment I stop taking the nebuliser and wait until I see an allergist. Also suggested Fexosenadine for my allergies…anyone tried it? I currently have a nasty infection and am battling trying to find out what it is because it’s resistant to two courses of Doxycline and one prednisone.. microbilogy have sent back my results to my Consultant but no joys with hearing back…back onto the Secretary tomorrow. They have a backlog of letters! Thanks again xxx
Just curious as to why you were told to stop nebulizing as nebulizing albuterol and 3% 0r 7% saline and airway clearance is the only way to keep bacteria numbers down and in some cases eliminate the bacteria. I nebulize with a mouth piece attached to my Aerobika device to remove the mucous. I hope this helps.
Thanks… I spoke to the helpline who said that the solution I’ve got 7% is possibly causing an issue, plus because of my allergies (to all the various plastics) I’m causing more harm by inflaming my lungs…she did say that I do need to ensure I’m clearing my lungs as much as I can. Unfortunately at the moment as I have ANOTHER nasty excerbation I need to try and clear that with the medication provided but obviously with my sinus situation that is unlikely to be dealt with quickly (and constant infected nose) it’s all very much a vicious circle
I'm sorry to here having hasselt with the mask I don't know but some one might be able to help I have chronic sinus with rinitis and post nasel drip had this thirty years it also causes my inner ear ta infame causing dizzines I've had everything going from buying things plusses from docter nothing worked I saw e n t consultant last month he give me advamy nasel spray well didn't think much off it but some one recommended sterima nasel wash for congestion well I tried it it was very good I used it 3 times a day for a week up to now everything being good it's just salt wash it's a spray I'm shocked how good it was
I have Bronchiectasis too and feel your pain in trying to get help.
Regarding your nasal infections, are you able to buy something called Navage nasal irrigation system? It uses batteries to push the solution through one side of nose and sucks it out the other. I couldn’t find out what the nasal pads are made of so you might try touching them to a part of your skin where it wouldn’t be painful if a reaction. If you are allergic to the pads, you might try putting a plastic wrap over them, pressing it tightly, and making two holes for the fluid to come through. I’m guessing you’re not allergic to plastic wrap.
Also, I wear a vest that vibrates to loosen the phlegm in my lungs, so that it is easier to cough it up. I wear this when I do my breathing treatments, 3 times a day. And my doctor prescribed an albuterol sulfate solution for my breathing treatments. The vest is expensive and the doctor has to request it. But I would think with all of your difficulties and illnesses that you should qualify for one. I have been told that it is just a rental unless I keep it for five years or longer and then it’s mine
I hope you were able to find some relief and feel better.
Thanks for all your advice. I’m definitely going to look into the nasal system you mention. I’ve really never heard of the vest you mention…does it have a name please?
Mine is a Smartvest for airway clearance. It’s also, in general, a ‘percussion’ vest. I hope you are able to get one as it’s been very helpful. If doctor says no, there may be something similar on Amazon.
I cant remember what tge vest thing is called although there have been questions and answers about them before......to find those try writing vest in the search bar & see what comes up. P
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