Breathing issues with lupus

[Hhood]

I was diagnosed with lupus last November and been on Hydroxychloroquine since.

I suffer on and off with breathing issues where I feel I can't take in enough breath.

I wondered if anyone else suffers with this issue?

[Serser]

Oh yeah!

When I flare it’s just horrid! Gasping for breath! In between flares my chest feels achy and heavy-like having the flu.

I kind of take a double intake breath when I breathe-a bit like how you breather when you’ve been crying really hard. It used to annoy me because before I was diagnosed everyone just assumed I was anxious due to my breathing, but I knew I wasn’t.

I’ve just started on steroids and thet have helped ease the aching a little, but they aren’t something to consider starting lightly! Lots of side effects to consider. X

[SleepyWolf]

Yes, I was diagnosed early this year and am also on Hydroxychloroquine. I mentioned my breathing and dizziness issues (usually brought on by bending down or climbing stairs but occasionally without apparent trigger) at my last Rheum appt. The consultant referred me for a 24 hr heart tape (results were fine) and ultrasound (awaiting results) to rule out heart issues. However I'm very anaemic and I suspect that this is the cause of my own breathing issues. I often feel like I'm partway up a mountain and just can't quite get enough oxygen.

[katidid]

Yup, but on and off. First thought it was asthma but learned my lungs had shrunk. When its bad I do keep an inhaler on me. When its really bad doc increases the steroids

[Wolf1]

Hi. I was admitted in to St Thomas’s last November as had chest pain and breathlessness. My lupus had basically caused shrinking lung disease, fibrosis in both lungs and a hemi diaphragm ( all none reservable) I was put on Mycophenolate. A year on things have unfortunately got worse. Going to start IV Rixtibab in next few weeks xxx

[Chanpreet_Walia LUPUS UK]

Hi Hhood,

Have you spoken to your GP or rheumatologist about this?

Your doctor can provide you with the correct advice and treatment. Also, he/she can refer you to a specialist such as a physiotherapist or a pulmonary specialist, if required.

It is important to seek medical advice if you experience difficulty breathing. You may wish to read our factsheet on 'LUPUS: The Heart and Lungs' here lupusuk.org.uk/wp-content/u...

Please let us know how you get on, wishing you all the best.

[Fennella02]

Yes, I have both restrictive and obstructive lung disease caused by Lupus. I have inhalers, tablets and now a nebuliser too in an attempt to keep things manageable. Have you been checked out?

[Hhood]

Thanks for all your replies. GP has done chest xrays, bloods and an ECG. Which are all ok said I might need a 24 hour ECG though.

Still struggling with breathing issues some days worse than others. Seeing my reumatology consultant Mon so will speak to her about it then. X

[Lailala]

I had shortness of breath while I was on plaquenil heart echo showed pericarditis and I had to take steroids and azathioprine

You have to check the heart

[Vixen77]

Yes. I’m just starting my diagnosis journey, but I’ve had repeat bouts of pleurisy for three years and since feb this year, I have also suffered random episodes of shortness of breath, just as you describe. The first was so severe that I was hospitalised for three days with a suspected PE. It wasn’t a PE and no explanation was given. It cleared with steroids. Xx