Our Topic of the Month discussion for August is 'Coping with Lung Problems'.
A large proportion of people with lupus will experience some form of lung or breathing problem at some time, including pleurisy, pleural effusions, interstitial lung disease or blood clots.
We want to hear your experiences of lung problems with lupus. What warning signs led to you seeking a doctor's opinion? What medications do (or don't) help? Do you have any tips or techniques for relieving symptoms?
We would like to hear all of your tips and experiences and we’ll compile them towards the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk
The article itself will be posted on the LUPUS UK Blog at
Shortness of breath when I was doing my routine strolls plus shooting pains in my hands were the first signs of trouble. My GP suspected cardiac problems and made an urgent referral to cardiology. The 'urgent' waiting list turned out to be 8 months long! So I saw the same consultant privately instead - waiting time = 1 week. An echocardiogram led to a misdiagnosis of left ventricular failure, which was not appreciated until after I had a cardiac MRI some 4 months later. By this time, I developed clear signs of Raynaud's phenomenon in my hands and was referred to rheumatology (waiting time 6 months). Again I resorted to a private assessment by the NHS rheumy consultant and was diagnosed with ILD and CTD/Sjogren's. So my first tip would be not to feel guilty if you find you have to use a private route into getting a timely diagnosis - had i not done this, my diagnosis might have been delayed by a year or more.
My ILD was quickly resolved with HCQ plus steroids. Since then, my lungs have remained good, despite other AI problems getting worse. One thing that has helped reassure me about this is (tip 2!) having a peak flow meter at home - this gives a simple visual and quantitative measure of my lung capacity in case I am feeling concerned.
Tip 3 would be to be assertive about getting prompt treatment when you suspect you might be developing a chest infection. don't just 'sit on it' and hope that it will go away on its own. Likewise, make sure you are on your GP's priority list for routine flu and pneumonia inoculations.
Thank you so much for sharing your experiences and your tips! Those are excellent bits of advice that others may not have thought of and could find very helpful - I especially like the idea of having a peak flow meter at home. Where did you purchase one? Was it very expensive?
I've had breathing problems for the past 2yrs I was apparently jus diagnosed with asthma until they done a routine check for copd. They said I didn't have asthma and took me off my inhalers it got worse over this last year. Then I repeatedly went to my docs month after month they sent me for xrays etc now they have referred me too the chest clinic which I'm there on the 4th oct....
I'm sorry to hear that you've had these problems going on for so long. I hope that your appointment at the chest clinic goes well and they are able to provide some answers and start some effective treatment.
Hi Paul. I have asthma It was diagnosed over 30 years ago. I used to get lots of chest infections until I was diagnosed with sleep apnea. With a c pap machine the infections became less. I get my doctor to check my lungs if they start to feel tight or uncomfortable. I check my breath out put if it tight. I have had to have prednisone if the asthma gets worse. It’s a constant listening to my body and never be afraid to ask the doctor to check it out x
I have had difficulty with it but I have now customised it a little. Firstly the mask was difficult to wear so I have made a liner which stops the mask sticking to my face plus it stops the air coming out of the sides. I also have a risers for the tube which get it out the way from my head I find it difficult still but still working on it. Thanks xx
My SLE was diagnosed in 1995 and was mostly controlled with Plaquenil and NSAID’s. My joints, particularly hands and wrists were badly affected and I have a continual butterfly rash and Raynauds syndrome. I was then referred to a chest / respiratory specialist when my persistent cough became worse whilst taking Methotrexate in 2010. My Lupus Rheumatologist was able to liaise with him to change my medication to Azathiaprine which I took for about 4 years. I occasionally had joint flare ups and/ or chest infections which usually meant short courses of tapering Prednisilone. The cough was causing additional discomfort for me because of stress incontinence, and continual U TI ‘s. The cough has become increasingly productive and my Consultant has regularly assessed my condition with X Ray, scans and Lung Function tests. He has confirmed a diagnosis of Interstitial Lung Disease, or in his words, “ significant scarring of the lungs” with Bronchiectasis and mild asthma. I have breathless episodes but have really benefited from seeing a physiotherapist who specialises in breathing techniques. She has helped me to change my mindset from “ terrible cough” to “coughing is good” as it clears all the rubbish from my lungs and respiratory tract. I manage to control it with adhering to morning exercise to clear the mucous, and taking Flixotide and Ventolin inhalers. The regular exercise ( walking 5 k every day) has also improved my joints and enabled me to maintain my weight. I take Carbosisteine capsules 3 times daily to make the transit of mucous easier. A low dairy diet has also been advised. I no longer take Azathiaprine and find I am not so susceptible to picking up viruses that turn into chest infections. I have had Pleurisy a few times but otherwise feel in control.
Thank you so much for sharing your experiences. It is wonderful to hear about everything you have done to help maintain better control of these symptoms and the benefits you have noticed. Were you referred to the physiotherapist by your doctor or did you find them yourself?
Hi Paul, I was recommended the physiotherapist by my Respiratory Consultant but had to pay privately for my sessions with her. The NHS is unfortunately unable to provide many ‘joined up” therapies or appointments as both Rheumy and Respiratory medicine departments are so overstretched.
I am now retired and can fairly easily fit my lifestyle around my needs. ie I never accept social invitations in the mornings or BC ( before cough) The last few weeks of intense heat have been extremely challenging. My lupus rashes are depressing and the need to cover the skin all day is tedious. I have been taking my walk very early and crashing out in the afternoons.
I've had blood clots in the past, so I'm on Xarelto as a preventative medication. I was in a car accident in June and the seat belt tightened across my chest and I was in the hospital recently for chest pains. I had xray, scans, heart checked, all of which came out positive. I'm short of breath and feel my chest tightness. It's been 1-1/2 months since the accident and I still feel like it was yesterday ! Could this accident have triggered my SLE to become more active?!
I'm sorry to hear that you are still struggling following your accident. I'm not medically qualified so I cannot say whether the accident could have triggered your SLE to be more active, although stress and trauma are potential triggers for flares and so it may be possible.
Tightness in the chest got worse year on year until suspected pulmonary embolism led to diagnosis of severe pulmonary hypertension which 6 months later led to diagnosis of Lupus sle .
I should have been to the doctor at least 5 years earlier to get it checked out.
I knew something was wrong as heavy excersise or serious stress made me nearly pass out.
I have since been told my liver and kidneys are badly damaged and have a dilated ventricle.
Thank you for sharing your experiences. So, would your advice to others be to see their doctor sooner if they are having chest symptoms? Was there any reason in particular that stopped you going sooner?
Great timing I've just got an appointment through for Respiratory Medicine.
My previous Rhumy sent me for a Lung Function test 6 months ago, as the last one was 2 years previously and came back fine. I'd said I i was feeling generally worse with off and on tightness in my chest and a cough, so she was covering all bases. The test came back saying I wasn't absorbing enough oxygen so was sent for a CT scan. That came back with nodules and possible Bronchiestasis.
I then went to see a Respiratory consultant. We went through symptoms e.g. breathless (I just though I was unfit), productive cough, malingering chest infections etc... She said she thought the Bronchiestasis was linked to my Sjogrens, she gave me a leaflet and we talked about what to do if I thought I had a chest infection- all in all a positive experience. She also said she'd write to my Rhumy.
I'm currently on Hydroxychloroquine and on and off tapering Prednisone. My Rhumy mentioned probably putting me on Methotrexate at my next appointment, after speaking with Respiratory Medicine. He asked me if I knew why I'd got Bronchiestasis and I said not really but I might have had shopping cough when I was pregnant with my second child. He said could be the lupus as well....
If I feel tight chested I go to the docs and get antibiotics as if I get a chest infection - it's usually 5-6 different antibiotics before it shifts and then there's a persistent cough for weeks after.
(1) regular cardiovascular exercise (2) allergy medicines (3) always carry an inhaler and emergency stash of steroids (4) staying away from areas with high levels of ANY particulates (5) change air filters 3 times sooner than recommended (6) keep a clean house - wipe surfaces, vacuum, dust but minimize unnecessary harsh chemical exposure (7) immediately treat any infection that could travel to the lung.
Those are my tips. I was diagnosed with “shrinking lung” as part of my lupus diagnosis.
Hope this helps!
ONE MORE: ALWAYS wear a mask if you are in a hospital setting.
I have terrible shortness of breath then lung collapsed and ended up in coma for a month was drug induced by hospital . I am now on oxygen 24/7 and waiting for lung transplant
As background: I was diagnosed with Lupus 2 1/2 years ago after having RA for nearly 20 years. My rheumatologist thinks My disease evolved and not Lupus, rather than disease overlap. I am currently taking hydrochloraquine, etodolac, occasionally low-dose prednisone for flares, and recently (since January 2018) mycophenalate in stepped-up dosing to my current dose of two tablets twice daily. The mycophenolate has helped with photosensitivity, hair loss, joint pain, and fatigue to a good extent. There has been no kidney involvement indicated. Pertaining to lung involvement: About six months ago I developed a chronic, dry cough, which seems to come on and worsen during flares, especially with fatigue. My voice also becomes thin and weak. I am not short of breath, but have a slight constricted feeling, for lack of a better description, and a “fluidy” during coughing periods. Chest X-rays that were taken (not during a “coughing” period) and were negative. My primary thinks the cough is due to post-nasal drip, however, there are times when I’m experiencing severe post-nasal drip and have no cough. If I want, my rheumatologist said he would order breathing tests.
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