Lupus and breathing problems

[jimbo1605]

My wife who has sle has suffered with severe breathing problems for a number of years. Fibrosis and pleura problems were ruled out but no one could identify the cause.

Thanks to addenbrokes we have an answer. I want to share this so others with breathing problems could consider this with their doctors.

My wife has edac excessive dynamic airway collapse. This was caused by sle causing issues with the tissues around the windpipe. This causes the windpipe to move as she breathes out. This in turn collapses the windpipe causing the breathing problems.

So sle can cause breathing problems beyond the textbook fibrosis and pleura issues.

[RosieA]

Oh my goodness. I am so sorry to hear this. I am so glad that they managed to find the cause. I am interested in wether you had to fight for this answer, especially as it was not textbook. It is really difficult when we don't fit the textbook and subsequently run the risk of being dismissed.

I struggled for several years with what everyone thought was rib pain but now because I have confirmed pericarditis they think I probably had pleurisy too, it just didn't present in the normal way.

So thank you for your post. It highlights that good practice will pursue things until they get to the root cause and how important it is to 'fight' our corner if we are being dismissed.

I hope your wife is now on appropriate treatment and that her breathing is becoming easier.

[jimbo1605 in reply to RosieA]

RosieA thank you for your reply.

My wife had her breathing symptoms for over 7 years. It was missed by two respiratory consultants who believed it was asthma. Despite 6 asthma drugs no improvement.

A new respiratory consultant discovered sleep apnea and my wife got a CPAP machine. This was an improvement but symptoms still got worse. The consultant then referred the case to addenbrokes who did a series of CT scans that discovered the collapsed airway.

Lessons we have learnt persistence, do your research but some of its luck of the draw. Getting the right consultant with the time and determination and expertise is critical.

Great to hear that you now have answers and hopefully this makes things easier.

[stiff19 in reply to jimbo1605]

I still get breathings issues and was told probably asthma but never given anything and never a diagnosis. pleased to hear you now have answers and help 🙏

[Willow7733]

I have both asthma and COPD, which came out of nowhere (never smoked, have a few allergies). I was wondering if lupus affects the lungs at all. This is interesting. I hope your wife is able to breathe better now that they know what is happening.

[Galaxies1 in reply to Willow7733]

Hi. I was diagnosed with PF which came out of nowhere though had always had allergies and chest infections. It turned out I had MCTD including systemic lupus and other auto immune things. It was the underlying auto immune that had caused the lung fibrosis most likely. So I've found that it can be linked.

[jimbo1605 in reply to Galaxies1]

Thanks for your reply.

Autoimmune and breathing is such an under researched area

[Galaxies1 in reply to jimbo1605]

Yes totally. Even those who say they specialise really don't always know everything because every person is unique. Good luck 🤞

[jimbo1605 in reply to Willow7733]

Thank you willow 7733 for your reply.

According to addenbrokes the condition has been caused by lupus and relapsing polychronditis. The former attacking the connective tissue the later attacking the cartilidge.

She still struggles to breath but at least we know why

[Lupeyfrou22]

Thanks for the update though I am sorry to hear this for your wife and yourself. Especially the long time.

[alija1001]

I too have breathing problems my daughter said I sound like Darth Vader but hospital still cannot work out what it is. One hospital discharged me saying it was fixed but it is still the same.

[jimbo1605 in reply to alija1001]

Alija, thank you for your reply. My wife sounds like Darth Vader too. Do consider airway obstruction. It is frequently missed and hard to diagnose. It has a variety of forms tbm, lac and edac.