August's Topic of the Month - Coping with Lung Pr... - LUPUS UK

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August's Topic of the Month - Coping with Lung Problems (We want to hear your tips and experiences)

Paul_Howard profile image
Paul_HowardPartner
29 Replies

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

lupusuk.org.uk/category/blog/

All submissions will be anonymised.

29 Replies
whisperit profile image
whisperit

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.

Paul_Howard profile image
Paul_HowardPartner in reply to whisperit

Hi whisperit ,

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?

whisperit profile image
whisperit in reply to Paul_Howard

No, they are cheap. You can get your GP to prescribe one or buy them in many high street pharmacies.

CRYSTAL11 profile image
CRYSTAL11 in reply to Paul_Howard

Paul peak flow meters are given out by asthma nurse at our surgery

Pinky06 profile image
Pinky06

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....

Paul_Howard profile image
Paul_HowardPartner in reply to Pinky06

Hi Pinky06 ,

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.

CRYSTAL11 profile image
CRYSTAL11

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

Paul_Howard profile image
Paul_HowardPartner in reply to CRYSTAL11

Thank you for sharing your experiences CRYSTAL11 . How do you find the c pap machine?

CRYSTAL11 profile image
CRYSTAL11 in reply to Paul_Howard

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

Zoe-mabel profile image
Zoe-mabel

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.

Paul_Howard profile image
Paul_HowardPartner in reply to Zoe-mabel

Hi Zoe-mabel ,

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?

Zoe-mabel profile image
Zoe-mabel in reply to Paul_Howard

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.

Lupus1980 profile image
Lupus1980

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?!

Paul_Howard profile image
Paul_HowardPartner in reply to Lupus1980

Hi Lupus1980 ,

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.

BillScotland profile image
BillScotland

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.

Paul_Howard profile image
Paul_HowardPartner in reply to BillScotland

Hi BillScotland ,

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?

Frosty1960 profile image
Frosty1960

Hard to tell as had lung cancer and had to have a lobectomy,I get a lot of problems tightness of chest,pains,also get a lot of phlemb also.

slaithwaite profile image
slaithwaite

Hi, Paul.

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.

katidid profile image
katidid in reply to slaithwaite

(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.

Paul_Howard profile image
Paul_HowardPartner in reply to katidid

Thank you for your tips katidid . They are really helpful.

slaithwaite profile image
slaithwaite in reply to katidid

Thanks for the advice and tips Katidid. Much appreciated

Paul_Howard profile image
Paul_HowardPartner in reply to slaithwaite

Hi slaithwaite ,

Thank you so much for sharing your experiences and tips with us.

Nanapapa6 profile image
Nanapapa6 in reply to slaithwaite

my speciak8st tells me my lung problem is caused by methotrexate so not sure why you would be told to use this drug

Paul_Howard profile image
Paul_HowardPartner in reply to Nanapapa6

Hi Nanapapa6 ,

May I ask what your lung problem is? Have you been instructed to stop methotrexate following this adverse effect?

I assume that this doesn't necessarily occur in everyone and therefore methotrexate will still be used for some patients.

Survivor23 profile image
Survivor23

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

Paul_Howard profile image
Paul_HowardPartner in reply to Survivor23

Hi Survivor23 ,

I'm sorry to hear that you have had such a rough time. Good luck with getting a lung transplant. Please keep us updated with how you are getting on.

WordWeaver profile image
WordWeaver

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.

Paul_Howard profile image
Paul_HowardPartner in reply to WordWeaver

Hi WordWeaver ,

Thank you for sharing your experiences. Do you think you will have any breathing tests? If you do, please let us know how you get on.

WordWeaver profile image
WordWeaver in reply to Paul_Howard

At this point I don’t expect to, but will report back if I do.

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