Does anyone else have problems with a cough more like a bark and during the night my breathing is terrible wheezing

[Liz2468]

Hi I’ve been in hospital about 4 times due my respiratory problems does lupus affect your lungs

[Hidden]

Sorry no but wish you well 🤗

[Tanitani]

It does but I never needed to go to the hospital because of it. I have interstitial lung disease because of lupus, that's reduced ability to process oxygen

[dg70]

Yes like a dog ever since I was a child. Mine was damaged caused by Bronchitis as a toddler. It may not be linked to your current lung problems but damage done by something else in the past. It's a pain and it feels like you can be heard for miles. I have sjogrens which has brought the cough back into my life more recently on a more regular basis. I find a humidifier every night for a few hours by my bed stops my throat being so dry and the air moister in the bedroom. Also putting a xylimelt in my mouth at night to keep it moist also helps as well as the standard steroid preventer inhaler every day has kept the cough at bay mostly with the odd few nights every few months when I get it flare up. It's such a pain as it keeps you, and the rest of the house, awake at night. And it hurts!

[Poshcards]

yes, me too, I have SLE amongst many other illnesses but now diagnosed with Asthma, I am on inhalers up nose and down throat and another tablet at night to help my cough x

[BrigidsFire]

Yes it can do. My pulmonologist diagnosed interstitial lung disease and based on that and other symptoms tested me for lupus, which has now been confirmed with further tests and by a rheumatologist.

[BrigidsFire in reply to BrigidsFire]

To add, I had a cough for about 18 months before being referred to the pulmonologist. It had worsened to the point that it was occasionally making me sick it was so violent, and I need to use light incontinence pads in case of minor accidents. Once the rheumatologist started me on steroids the cough improved, although it’s still there as it’s caused pulmonary fibrosis which will never go away.

[Liz2468 in reply to BrigidsFire]

Hi thank you for getting back to me I appreciate it can I ask you something about this new cough I feel I’m really breathless when doing something like even just trying my shoe laces are you on oxygen for pulmonary fibrosis as I’m getting really worried about this I hope you don’t mind me asking you

[BrigidsFire in reply to Liz2468]

Sorry it’s taken so long to reply! I get breathless walking upstairs or bending over to tie shoelaces, but I can walk on the flat (on a good day) for a couple of miles. I think some of the breathlessness comes from being overweight. I put in weight during the lockdowns anyway, then the cough and breathlessness put me off exercising, as did the tachycardia I started having. And some of that weight is now probably from the steroids. Vicious circle.

But no, I’m not on oxygen at all. I just have to make sure I take the time to get my breath back.

I didn’t even end up on oxygen when I was hospitalised with covid and my sats were around 80, because I was otherwise ok, so I was just monitored.

I’m worried about being oxygen dependent too at some point, but I’m hoping it won’t be anytime soon.

And now I know the tachy is probably just a symptom and not heart disease (I’ve seen a cardiologist too) I’m more inclined to try some form of light exercise again to raise my general fitness. Which will hopefully mean I lose some of the weight as well and therefore hopefully reduce some of the breathlessness.

[Alida_Bennett Partner LUPUS UK]

Hi Liz2468

I’m sorry to hear that you have been having respiratory problems. I have added below a link to our publication in relation to lung involvement in lupus, which I hope you will find helpful.

lupusuk.org.uk/wp-content/u...

If I can help further, do please let me know.

Kind regards

Alida