Hi everyone, I was diagnosed with bronchiectasis back in May. I have an on off cough. I am bothered with a lot of phlegm. I can never bring anything up. I do the breathing exercises nothing much seems to help. I also have auto immune Sjögren’s syndrome. I’m so frightened as I can never really tell when I have an infection. My respiratory consultation was cancelled due to COVID. Can anyone please advise? X
Bronchiectasis and sjogrens - Lung Conditions C...
Bronchiectasis and sjogrens
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Enniskillen1
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Keep drinking plenty of water daily and if you don't have them already ask for a prescription of carbocisteine to help keep the mucus thin and more easily coughed up.
You need to treat the symptom that Sjogren's syndrome is impacting. So not able to cough up you need to drink plenty of water and take the carbocisteine to help keep lung fluids loose so that you can more easily cough up.
I did have these before. Must maybe ask for them again! X
I suggest you ask about using a nebuliser. I have to use it four times a day, as well as the acappella vibratory device. It’s all time-consuming but worth it. Jo
How much saline do you use? When I was in hospital I was nebulising 5ml every 2 hours, as I got a bit better I was sleeping at night so it was only from 6am to 10pm.
I was sent home with a nebuliser but hardly any saline. I was using 5ml 3 times a day. It took a month of calls to the hospital, my doctor to get more than 20x 2.5ml pods to use. The pharmacist at my doctors kept telling me I only needed the nebuliser when I was ill in hospital! Finally I persuaded her to ring the respiratory team at the hospital. They told her yes I needed saline but not how much.
She is reluctantly letting me have 4 x 2.5ml per day. Took a lot to get her to let me have enough to tie in with my other prescriptions - she had my husband collecting a week at a time!!!
There are some lovely people on here who have bronchiectasis so I’m sure someone will reply soon with help and advice.
I hope you have Sjögren’s syndrome under control as it can be unpleasant. I have a friend who has it.
Hopefully you will be seen soon by a bronch specialist and I do wish you well. Take care xxxx
Hi sassy59. Hope you and hubby are fine and keeping safe. Not to bad here and keeping as busy as I can to while away the time with the new version of Shielding. At least hopefully this winter I can dodge the seasonal chest infections with the vast majority wearing face masks 😷. Going to miss the kids and grandkids though.
♥️
Hi Boudica1, we’re doing well here thank you. Glad you’re ok and keeping busy and safe. Yes that’s one thing, I’m hoping Pete won’t get a chest infection. We will also miss family but they can walk buy and wave so that’s something. There’s always FaceTime too thank goodness.
You take care and stay safe xxx💜❤️😘
I am on hydroxychloroquine for the sjogrens. Not sure if it has helped any x
Hi Enniskillen 1. I also have Bronchiectasis and other lung problems and joy of joy's Sjogren's as well.
Are you on Carbocistine as that will help with the mucus? You will need to see a bronch specialist.
As a fellow Sjogren's I don't think I need to remind you to drink plenty of water. It's hard at first to get to know what is going on or if one is aggravating the other and it will take time.
You will need to try and avoid anyone who has a chest infection and if you develop one then you need some antibiotics and contact your doctor about it reminding them that you have Bronchiectasis unless you are one of the very lucky ones that get to see the same one everytime.
Please try to relax and not to worry, yes it's very hard at work times but the breathing in exercises can be a help.
Take care and look after yourself.
♥️
Not on Carbocisteine. I drink loads of water. I sometimes don’t know what end of me is up. Are you bothered with mucous? I am on hydroxychloraquine for the Sjögrens. Are you on any medication for the sjogrens? I sometimes blame myself for not taking the medication for the sjogrens soon enough as this may have prevented the lung damage x
Yes I'm on Hydroxychloroquine and it sort of helps mainly with the achey hands and feet not any use with the new extreme fatigue though. When I was on 400mg a day it did help with the rashes that I get but they dropped the dose to 200 so the skin is having a right rave up.
Have you joined the Lupus group they have a lot of us Sjoggies as well as it's not a Lupus only group they are very welcoming, friendly and also helpful so you might find advice for the Sjogren's as well.
Good luck and keep well.
♥️
I don’t have any aches thankfully. Bothered a lot with mucous and throat clearing. I’m on 200g hydroxy. My readings show high inflammation. I sound congested a lot of the time. I sound like I have a cold a lot of the time. Not sure why this is. My white cell count is very low so I’m at high risk of infection. Don’t know if you infected this way x
When you say you sound congested and sound like you have a cold a lot of the time is that just the chest or nasal?
I suffer from Post Nasal Drip so it tends to end up in my throat and chest and anything I do manage to blow out of the nose is normally thick and sticky unless I actually have a cold. I do get a lot of problems with my Sinuses as well though.
Yes before I was diagnosed there were plenty of times I was clearing my throat and still do to some extent but the meds I'm on for my chest are helping. Mind you having said that I am under review at the moment and waiting for the results of a chest x-ray to see what happens next as I've had quite a few problems this year with one thing and another.
Good luck and keep well.
X
I’m forever ringing the doctor. My ears feel full. Yes I think it’s my nose as my nose feels blocked a lot of the time. It feels as though I have mucous in my throat. My sinus seem to bother me as well. So is probably not my chest. Doctor left me really strong antibiotics for a week and made no difference. Like you say it is probably post nasal drip with me as well. Do you have a problem picking up infection easily? By the way joined the BSSA there. Sorry for frying your head with all the questions x
I hope you get good results from your scan. I’m finding it difficult to deal with everything that is going on with me. I hope you don’t fret like I do x
The only consultant I’ve seen of late was a respiratory consultant and he seemed very matter of fact. I don’t know if I should be on any medication for the bronchiectasis. An appointment with anyone at the minute is as scarce as hens teeth! X
Make sure your doc gives you TWO weeks worth of antibiotics- the general advice from NHS is TWO not one weeks worth as it takes more time for us to recover from an infection- info on NHS site- good luck 👍
Nose and sinuses often acfected ad common when u have bronchiectasis = rhinosinusitis. I use a prescribed nasal spray but when v bad i take nasal decongestant pill otc/ sudafed.of u dont feel well,ring dr.i findind writing bullet points is helpful in telling dr 1234.add on what you need eg antibiotics/ nasal spray etc
Thanks for your advice. I was on a steroid nasal spray for 4 months. Really dried me up more. Sjogrens already dries up nose etc. What cures one kills another!
Yes.all a balanciing act.ive used steroid spray 4 nose and sinuses as better than symptoms i have as hav allergies yr round that causes probs too.i also take antihistamine,but still have probs.we cant win!! X
I don't mind you frying my head but please bare in mind about the Sjogren's Brain fog so it may be a little while to respond sometimes or a bit confuddled for people to read 😉🙃🙂🙃🙂🙃🙂. You can tell if it's a infection in the Sinuses as you may well get what I call a face ache/headache in the face. For me it's a aching nose and/or cheek(s) and around the eyes. I have to be extra careful with any Sinus infections especially if it is taking to long to clear up or I feel like it's going down to the throat because as I've said before I have multiple lung problems and Arrythmias so the doctors will prescribe prednisolone if they are concerned. They don't like having to do that unless they are getting a bit desperate though as I'm already on steroid inhaler and other stuff and I'm in the Extremely High risk group so don't need more problems with the Prednisolone interfering with the immune system.
Lucky I'm Shielding and if I do have to go out the vast majority of people are wearing face masks 😷. Have you joined the Lupus UK group on Healthunlocked? As I have said there are a lot of Sjogren's people there because Sjogren's is known as the little sister of lupus 🐺.
I hope you don't have to many symptoms to content with most of mine like to play Hide and Seek and suddenly jump out screaming BOO 😬💥💥💥.
Take care and keep well.
♥️
Forgot to mention yes I do have a lot of problems with mucus until I get to cough it up. Check out the NHS site about Bronchiectasis because as far as I remember Sjogren's is not listed as a cause for bronchiectasis. Also check the BSSA site as that is a wealth of knowledge of Sjogren's.
♥️
I have read somewhere before sjogrens can lead to bronchiectasis. My rheumatologist ment this as well.
Hi Enniskillen1
I have bronchiectasis and a couple of other issues. I used to have that problem of not knowing if I was developing a chest infection or at the start of a flare up with my asthma that would lead to an infection. I’ve got quite adept at juggling things around to deal with symptoms as they happen. A change in mucus colour can be an indicator of an infection, so I watch for everything. I have hypertonic saline and atrioventricular via a nebuliser to help with lung clearance via a PEP mask which works for me as I have TBM as well. We tune into the changing demands of our bodies and trial and error helps us strike the right balance. I hope you find yours soon. Good luck
Thank you for replying. That’s the thing I never cough anything up. You take care too x
Hi Enniskillen, Sorry to hear of all your problems. I have bronch and know what it's like to cough up loads of sputum. My respiratory nurse got the doctor to prescribe an Aerobika and it helped no end. There are other breathing devices on the market too, which other people find helpful. I was in a zoom meeting when the gadget started to work its magic and I had to keep turning the laptop away, so colleagues could not see me coughing up loads of green nastiness. Good luck. You need to keep on at your surgery to get you a consultant's appointment. A telephone appointment would be better than nothing.
Yes getting a telephone consultation from a respiratory nurse on Tuesday x
Good luck xx
Was speaking to her today. Told me my chest sounded very clear. Will write to doctor to prescribe carboc... x
I was put on. Inhaled colomycin antibiotic which has kept me infection free for the last 18 months
Hi Enniskillen1,I have asthma ,bronchiectasis and copd it's the bronch that causes most infections and issues with mucus ,so I regularly use azithromycin for infection control and and mucolyte for clearance ,carbocysteine used 3 times a day for 6yrs and now on nacsys 600mg effervescent tablets .aAlso using a flutter device or acapella device to clear lungs completely every morning makes life so much better. I hope this helps and you feel better soon
I can see many of our lung buddies have recommended drinking lots water, very good advice and moving about if that's possible. Even gentle stuff such as chair Pilates that can make you cough may help with bringing up that phlegm which is important to remove with bronchiectasis.
I do hope you get to speak to a consultant soon, it doesn't look as if any face-to-face appointments will happen until mid to end of next year if that but maybe virtual at least. It is difficulty because the first thing our consultants to is listen to our chests!
Take good care and have good Sunday. 😊
I’m having a phone consultation on Tuesday with respiratory. X
Ive been diagnosed with bronchiectas too and i used to have one chest infection after another. Are you under the care of the Community Respiratory Team? They come out to me rather than me having to go to the surgery.
Ive got a device called an Accapella which is meant to help with shifting the nasty green stuff
Yes I am under their care. I’m getting a phone call on Tuesday x
I was diagnosed with bronchiectasis by a wonderful consultant in Gloucestershire called dr. Parry he has since sadly died but not before I was able to thank him for the difference he had made to my life .I used to continually cough up copious amounts of phlegm ,but he prescribed Azithromycin 250mg tablets one a day ,within less than a month the phlegm has lessened to the extent that when I feel the need a couple of deep breaths and fierce blows dislodges and clears my lungs . I now take Azithromycin during the winter months only and at my last review I was told I have the lungs of a 127 year old woman according to my tests but the practise nurse said the machine does tend to exaggerate .Several times I have had lung infections but fortunately my emergency antibiotics and steroids have sorted me I am crossing fingers and toes and touching wood as I have been well for over 3 years now and the only time I have been to the doctors surgery is for my annual review .I hope this helps stay safe love gracious.
Please can you tell me more about exactly what you take.... I am newly diagnosed, 54yrs, 3 teenagers and fighting off an NTM (on the same meds as TB). The bronchiectasis part is doing my head in.... doctors seem nonchalent about it.
nonchalant (sp)
For Bronchiectasis I use Flutiform, two puffs morning and night. It has changed my life. When I get chesty I use a Flutter Mucus Clearance Device. You can get these from your Doctor. Not sure about your Sjögren’s syndrome though.
Firstly, please don't panic. Keep hydrated, get on carbocisteine, do physio like postural drainage with clapping, at a pinch you can do this yourself. There is much helpful info out there, this link is to one of the best, in my opinion.
chss.org.uk/documents/2013/...
I have belonged to Bronchiectasis R us for mnay years now, there is a plethora of pertinent info empathy and understanding on there, have a look.
bronchiectasis.info/default...
Look after yourself and the best of luck.
Hi,
I have emphysema (COPD) and Sjögren’s syndrome and you are only person I have met with it. Have you joined Sjögren’s society? Could be worth asking them if it wasn't for COVID I would suggest being referred to pulmonary rehab ( look up & see if you can find locally) I found that the most useful thing apart from meds & inhalers. Also look up Huffing breath something I learned at rehab also respiratory nurses. My local hospital 'Royal Berkshire' have a dedicated cardiac & respiratory department that I can ring with any concerns I may have. There is a lot of help out there its just so unfortunate that with lockdown you will need to do some work on the computer.
Dont forget British Lung Foundation helpline.
Sorry for rambling on and good luck. 😀 Joan
Please tell me how you are affected by the sjogrens? I thought I was the only one with both. Do you have any issues with infections. I am suffering with extreme anxiety. Hope your train of thought is not like mine. X
I got a telephone consultation today. I do the breathing exercises and part of it is huff breathing x
Hi Enniskillen1,
Sorry for the delay replying about Sjogrens, to be honest it is difficult to know which symptoms belong to which but it is known that dryness is a prime symptom of sjogrens so I guess for me it is dry eyes & mouth .
I have also suffered extreme fatigue and anxiety which have been treated with anti depressants and sedatives. Most recently my GP prescribed 1500 mg vit D which has had a marked difference after all the weeks indoors due to 'COVID19 lockdown'.
Good that you've had telephone help, I also used 'Talking Therapies' 'Talking Health' a free 6 week telephone service in England hopefully in Scotland too, they supplied booklets on anxiety, COPD and others specific to your needs. Do contact them because I find actually talking to someone very helpful.
Remember there is a lot of help out there also many people with similar problems so you are not alone.
Warm regards
Joan
I have bronchiectasis too but mine was caused by acid reflux(now on omeprazole)..I used to worry a lot if I was getting an infection or not as I did used to bring up a lot of greenish mucus of a morning,but I think a lot of it is post nasal drip as since I have had bronchiectasis I do have post nasal drip,thick mucus and itchy nose/sneezing..most of it felt like was from my throat though,I could tell when I brought something up from my lungs because I could feel it catch,if you know what I mean..I was sleeping on an angle at first due to reflux but now I'm back down flat I seem to coff up less that I know is from my lungs..I'm no doctor but I'm sure when I was sleeping up on an angle my post nasal drip was going into my chest so that's why I used to cough up more from my chest
It seems as if I have got both together too. The throat clearing is horrible x
I have the same symptoms as yourself but mine is COPD so my consultant has said. I have a lot of mucus on my chest and find it difficult to bring up. My own doctor will give me antibiotics until I send in a sputum sample. As the same as yourself I can’t distinguish between an infection or not. But I use a face steamer and that helps to dislodge the thick stuff on my chest. I find it better than putting a towel over my head and inhaling from a bowl. Hope it might help.
Got a phone call today from a respiratory nurse. She went through the breathing with me again I do take brain fog. She said my chest seemed very clear but did suggest trying carboc.. I would be unable to give a sample. I took a full course of antibiotics there and I don’t even know if I needed them or not. If you have copd does that mean the oxygen in your blood is not good? I had to have a chest x ray a few weeks ago due to chest pain. Some of it may have been down to anxiety.
sorry that you are not feeling very well, I find it hard to bring the phlegm up, I have a butterfly that the doctor prescribed, it can help but is very hard to do. I also have carbocian 2 x 3 times a day. I hope you feel better soon.
Thank you. The respiratory nurse has ordered carb..... for me.
Are you doing the breathing exercises correctly? Try lying on a sloping bed and do the techniques as prescribed by a physio. They know more about this than doctors. I do 50 mins morning, 50 minutes evening and 30 minutes in the a afternoon. A hard graft. It may or may not work. Talk to your physio first. All the best. Cliff.
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