Lung symptoms: Hey folks, I’ve been doing some... - LUPUS UK

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Lung symptoms

AmyG6500
AmyG6500
22 Replies

Hey folks,

I’ve been doing some autoimmune reading, funny how this becomes part of life isn’t it?

I told my rheumi 6 months ago I was getting breathless particularly when lying down. He wrote in his letter that I had mentioned it but my creatinine levels were normal. Is that even relevant?

I’ve read more about lung involvement recently and wondered if I should be pushing to have this checked up. Any thoughts?

I’m also very light headed and can’t think straight through the brain fog.

My mum said to get my blood pressure checked. That hasn’t been done in over a year and to my knowledge my oxygen levels have NEVER been checked.

I have undifferentiated connective tissue disorder. RO positive.

22 Replies
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Penguintaz

Hi Amy,

This sounds rubbish of your Rheumy! My blood pressure, heart rate and 02 levels have been checked ever since I mentioned chest pain last year (I also have a high heart rate and low blood pressure). At the time it was plurel effusion which cleared up after a steroid course. Mention chest pain to your GP, they can check blood pressure, 02 and heart rate, even if creatine levels are normal I think there could be something going on.

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Lisalou19

My doctors have a blood pressure machine in Their surgery that you can pop in and use. Not sure how far your surgery is and if they have the same.

I get breathless at times but was told my gp this could be caused by using steroids. Having said that I am off for a lung function test this Thursday, so I suspect my rheumatologist thinks there maybe an issue. I’ve never really given much thought to internal damage until recently. You should push to get yourself checked out further. Only don’t tell them you’ve been reading online, that gets you the automatic look of 🙄

X

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AmyG6500
AmyG6500
in reply to Lisalou19

Yeah. I know that look well! 🙄😭

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SleepyWolf

Hi Amy,

I have SLE with RO positive, diagnosed last year. When I mentioned to my rheumatologist that I was experiencing frequent breathless, light-headed or dizzy spells (usually after bending down or climbing stairs, but sometimes when lying down) she sent me for 24 hr cardiac tape and cardiac echo - both of which were fine. Blood pressure also fine. She said that if there was a lung problem it would have got much worse quite quickly, so didn't explore that any further. I am also anaemic. I can't see any reference to creatine levels on my clinic letters.

A few months later and I am no better or worse in terms of frequency of breathlessness, and have begun to see it as just one of the fun things that come along with Lupus.

I hope you can get some explanation for your symptoms.

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whisperit

You can get home testing kit for some of this eg you can get a BP machine, blood glucose tester, and peak flow meter (for lung capacity) quite cheaply from most pharmacies, or from the internet. I've also used medichecks home testing for a few things when my medics have been reluctant to order blood tests (but they are pricey of course). x

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louise-a

If you use a peak flow and the chart it can help your Gp evaluate. So many reasons for breathing issues but if it needs looking into whisperit has made great suggestions which you can start yourself, good luck. x

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AmyG6500
AmyG6500
in reply to louise-a

That’s a good idea. Thanks

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Fennella02

My first symptom of respiratory issues was breathless when lying down. I was referred for lung function tests which weren’t very revealing initially and then I was tested for respiratory strength. These showed low strength so I was tested for diaphragmatic strength which was very low. Strangely though, no-one was especially interested in that. I’ve since read that up to 25% of lupus patients have poor diaphragmatic strength so perhaps thats why but it doesn’t seem to be a widely acknowledged fact. Anyway, over the past 3 years, my respiratory function has declined but mine is airways rather than lung - there’s a big difference. Mine is both restrictive and obstructive bronchiolitis/small airways disease for which I take tablets and inhalers, prompt action with antibiotics etc. All the stuff that COPD suffererers get but it’s not COPD. Hope this helps a bit xx

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Boudica1
Boudica1
in reply to Fennella02

Hi. COPD is an umbrella diagnosis for any disease that causes obstruction in the lungs, avioli and bronchial tubes.

It is not just a smokers disease as some of the diseases can be caused by repeated chest infections, work related and other illnesses such as Measles. Some of them can also be inherited such as emphasima which is rife in my family.

COPD is a lazy diagnosis without investigation of what the actual disease is. Chest x-ray and spirometry tests can't diagnose emphasima, bronchiectasis and fibrosis, only a CT scan will be able to provide a clear picture of the lungs and show what is going on and where.

I was given to lazy diagnosis of COPD some years ago via an x-ray. It wasn't until I had a scan that the proper and complete diagnosis of bronchiectasis, emphasima and fibrosis was discovered.

The usual treatment for some lung diseases is not always the best for others.

Also a respiratory clinic is not capable of dealing with Bronchiectasis as like fibrosis the mucus that collects in the passage ways needs to be encouraged out with specific breathing techniques and medicine.

X

4 likes
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Fennella02
Fennella02
in reply to Boudica1

I agree re COPD. My consultant peered at me as he told me ‘I’m treating you as if for COPD, which you do not have’. Nevertheless, my dx is Bronchiolitis and Obstructive Airways Disease. I’ve been told in the past that it’s restrictive too but when the RV & TLC ratio is 144% pred as mine is, there’s some debate as to whether it’s Res or Obs.

Agree re lazy diagnoses. My consultant is so not interested in me. He wants to discharge me to my GP but GP says no. He told me last year that I might have ‘a bit of bronchiectasis’ but told me that the treatment would remIn the same. Hmmm.

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Boudica1
Boudica1
in reply to Fennella02

Have you had a scan? If not maybe you could ask for one to get a proper diagnosis, it will rule out anything else.

If bronchiectasis is suspected the scan will show it, where it is and how much is affected.

The treatment for bronchiectasis is not the same as other obstructive diseases. Also most GPs and other doctors rarely come across it and have limited knowledge in the treatment of it. The only one that is qualified is a bronchiectasis specialist and not someone who deals with respiratory problems as they are different. With bronchiectasis along with the meds you also need to know how to clear the lungs every day but because of the mucus that collects in the bronchial tubes the patient is prone to additional infections. They need to also have an emergency pack of antibiotics for use when they get a chest infection. Most GPs don't realise this and have to be told by a bronchiectasis specialist.

Basically bronchiectasis patients have a similar treatment as Fibrosis patient.

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AmyG6500
AmyG6500
in reply to Boudica1

No, I haven’t had a scan. Except a spinal and brain MRI to rule out MS, that was a 18 months ago. I don’t know if that would have shown lung issues. Do they look at other things or just what the scan was ordered for?

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Boudica1
Boudica1
in reply to AmyG6500

You would think so, I guess it may be because they are not sure what they are looking for they look at everything.

To be honest I'm not sure as I myself have been having a lot of urq pain and because of some blood in pee GPs thought kidney stones. Repeated x-ray's and scans of that area showed no kidney stones.

No one spotted or mentioned that I have gallstones and as one is really big and the gallbladder is fairly close to the right kidney you would have thought it would have been spotted.

Over 2 years they've been chasing the cause of the pain.

So I think if they've been told it may be this then they may not look at anything else.

Oh well at least I know now.

1 like
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Fennella02
Fennella02
in reply to Boudica1

My scans were 2011 & 2012 which is when things were just getting going. They showed shadows in both sides ‘tree in bud’. But, it was after that when my spirometry started to decline. I’d love another but I have to be sure that it would change the management or it’s unjustified xx

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AmyG6500
AmyG6500
in reply to Fennella02

That’s very interesting that your first symptom was breathlessness when lying down! Tells me I need to push on this. Thanks

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louise-a
louise-a
in reply to Fennella02

really helpful to me too, thanks. x

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Chanpreet_Walia
Chanpreet_WaliaAdministrator

Hi AmyG6500,

I do not believe that creatinine levels are related to the lungs. According to The Lupus Encyclopedia, creatinine levels are checked to see whether there is too much protein being filtered through the kidneys. Many rheumatologists order this test for SLE patients to make sure they do not have lupus nephritis.

Yes, you most definitely should push to have your lungs checked or to be referred to specialist i.e. a pulmonary specialist. If you are experiencing breathing difficulty, you must seek medical attention. We published a factsheet on ‘LUPUS: The Heart and Lungs’ which you may find helpful lupusuk.org.uk/wp-content/u...

To read our blog article on, ‘coping with brain fog’, click here lupusuk.org.uk/coping-with-...

Please keep us updated, wishing you all the best.

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AmyG6500

Thank you, I will read the fact sheet! That’s really helpful

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Joy_1

Hi Amy

I too have UCTD, but with lung involvement. I was diagnosed in 2012. My problems actually started with a persistent cough and I did not get any joint issues until a couple of months later.

Thankfully my lung issue is classified as mild and has not progressed at all since I was first diagnosed thanks to my Prof, the meds and hitting the pool 3 times a week. So quite a few slaps on the wrist for the team who are looking after you!! Shout shout shout.

Initially I had an x-ray then a lung function test + CT scan. At least they can do a lung function test that is not invasive. Have they even listened to your chest?

Joy

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AmyG6500
AmyG6500
in reply to Joy_1

No, no one has listened to my chest for years. In fairness I’ve never had a chest infection.

I think as soon as I mention anxiety (which I’ve been treated for for decades) they put it down to that. This is new tho and curled up for a nap is not exactly an anxious time.

It’s just so hard to find the energy to shout! I’m sure you know what I mean. I’ve pushed so hard to get this far, it’s exhausting. I will push further, I know I must. 😩😴😴😴

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AmyG6500

Thanks so much everyone for your comments and advice. I’ll get a peak flow and chart for a start.

My peak flow was rubbish as a child and I know my lung capacity isn’t great. Actually I’m a trained singer (when I have the energy these days) so my diaphragm strength and lung capacity should be better than average.

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louise-a
louise-a
in reply to AmyG6500

Yes I agree . Perhaps your singing actually helped keep your lungs better for longer. I bit like exercises for Copd etc. Good luck xx

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