I’m having what I assume is a lupus flare (although my pain isn’t as bad as it sometimes gets), my main issue is over the last week I’ve become increasingly breathless.
My blood pressure, pulse rate and blood oxygen is all normal. I have no temperature. I had a chest X-ray on Thursday which is normal. I’m not as breathless when sat still not talking, but as soon as I move or talk I’m so out of breath. I now can’t say a full sentence without taking multiple breaths throughout it. And I’m just generally exhausted despite having had 5 days bed rest!
On Monday I restarted back on methotrexate after a trial off it, and I know it could take a couple of months to kick in, in the meantime I’ve asked for steroids which I won’t be able to get until Monday.
I just wondered if anyone else experiences this and has got to the bottom of what’s causing it!
thanks in advance!
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Alexia01
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Hi, a few years ago I had a similar experience, I couldn’t breathe after even moving very slowly, sitting down I was fine, I was taken into hospital while they tried to figure what was wrong. They put me on antibiotics but nothing changed. Eventually they sent me for a high resolution ct scan and it showed I had pneumonitis which is inflammation in lungs. I was put on steroids for a few months before it settled down.
thanks to getting back to me and sharing your story. I worry that if I go to hospital they will just say my X-ray was fine and send me home, but there’s clearly something going on! Maybe I will see if I can request a CT and mention pneumonitis.
I had really badly breathlessness back in 2007 before I was diagnosed. It turned out to be anaemia - and was one of the things that pointed the doctor to a diagnosis. Could it be that?
Hi, I don’t have lupus but I do have vasculitis GPA, in which I had lung involvement. Since I have always experienced breathlessness, which I have always put down to lung scarring. However, since January my breathlessness has become much more impactful on my day to day activities, even having a shower I have been a mess. We went through the GP, but useless as ever do we decided to contact my rheumatologist directly as we were worried it might be a flare. My bloods and scan did not show any signs there was a flare, but ensured I got to see a respiratory specialist. I have been sent to have some breathing tests, where I nearly collapsed and have been sent for a high resolution scan. I am yet to get the results. Whatever is the outcome and I am always someone who down plays how I am feeling as always feel I am a burden, it will be good to know what is happening as it has been really impacting my already reduced life - so keep pushing and hopefully you will get to the bottom of what is going on with you - good luck 😊
Definitely ask for a high res CT scan. My X-ray was clear but the scan showed pulmonary fibrosis (ground glass patterning). It was the pulmonologist who actually diagnosed my lupus and referred me to the rheumatologist. My symptoms were a cough and breathlessness.
Lupus caused my interstitial lung disease as I was undiagnosed for so long, and the scarring is irreversible, so getting it checked out sooner rather than later is key.
thanks for your message. Sorry to hear of the ordeal you went through go for a diagnosis. Lucky that you had a good pulmonologist! They seemed very reluctant to give me a CT scan but when my second lots of arterial bloods showed low oxygen they eventually sent me for one and it’s clear! Just had a heart scan so waiting for the results of that next!
before I started on methotrexate I had very little voice and leaving me very breathless I was in a flare up the steroids helped a lot more quickly than waiting on methotrexate getting into my system. Is there not a pharmacy that you would be able to take your prescription for steroids today as the sooner you start them the better I also had to use my inhalers more often this be be something that you could discuss with your doctor
Thanks for responding. I’m in hospital now and have finally seen my rheumatologist (as I was admitted on the weekend there was no rhumatology in!) the consultants over the weekend seemed fixated on it being a viral infection so have been been treating me with antibiotics! Hoping to start steroids today!
Sorry to hear your on the hospital Alexia01 however your in the best place for them to find out what’s wrong with you
I hope you feel better soon xx
Hi
Definitely contact Rheumatology asap as it’s not right. Could it be the Methotrexate causing this as a side effect? Not sure if the timings work 🤯 - my brain isn’t in gear today! ✨
The out of control wildfires in Canada are even sending smoke over to Europe now this week. I'm in the US and whenever the smoke is blown down here and it's bad I get terrible headaches and breathlessness, even tho my O2 levels are OK. I think it's an allergic reaction to the particulates in the smoke.
I've been taking once a day allergy med Zyrtec and it helps, as does an air purifier I run in my bedroom. And I try not to go out for long where the smoke is. Even if you can't see it, it may be at unhealthy levels where you are.
You can Google to find what the air quality is in your area. If it's bad, you should maybe wear a mask outside and stay inside and try allergy meds and an air purifier.
I had terrible migraines for 3 days straight and breathlessness before I figured out the problem was smoke from the Canadian fires coming all the way down to where I live a whole country away! Allergy meds and staying near an air purifier fixed it for me.
I'm praying it will rain in Canada and put them all out, but no luck yet. Right now millions of acres are still burning.
Hi Alexia, there’s a similar thread going on atm about breathlessness on this site, might be worth checking out. I had severe exertional breathlessness last year, I was off work 6 months because I could hardly walk or talk without needing like 20min to recover. I had every test under the sun—they couldn’t find a cause. They saw my HR was skyrocketing, but they could find nothing on the scans to explain why. In the end I gradually recovered without diagnosis or treatment, but it took close to 6 months. Sorry I can’t help, but you are definitely not alone in your experience!
thanks for your response. Sorry to hear what you went through, that must have been so frustrating for you. Glad to hear it eventually rectified itself but have annoying that you never got any answers.
I can see this going the same way to be honest, still a couple more tests left to do but no answers yet. I think the only reason they are still looking is because my oxygen is low on my arterial bloods so something is going on!
I hope the low O2 gives them something to pursue, or perhaps a clue as to the potential cause. My arterial bloods had normal O2 and super low CO2, which normally indicates hyperventilation—except I wasn’t hyperventilating! So hopefully yours has a clearer pathway toward diagnosis and treatment. Please keep me posted, I would love to hear what happens for you. 🌻💚
Thanks to everyone for their responses and suggestions. Really appreciate it.
Just an update: Went to A&E on Saturday and they admitted me, saw a chest consultant Saturday who said it was viral (despite there being no evidence of this and all my viral tests being negative) she said the breathlessness was down to an irregular breathing pattern which I needed physio for.
I explained that I was sure it was a lupus flare up and that I actually needed steroids but she didn’t seem to agree! Eventually she admitted that although oxygen sats are normal with the finger oximeter, when they did and ABG test (arterial blood has test) my oxygen was low. So she agreed to do another, my oxygen was still low!
By Sunday morning I couldn’t can get two words out without needing a breath, and my voice was just a whisper. I was so exhausted and weak. They put me on oxygen and sent me for a chest CT. Finally saw my own rheumatologist who arrived with the good news that the chest CT was clear, and sent me for heart scan which I am waiting for results on. Think the plan is to also do lung function test and then give me steroids and hopefully then I can manage without the oxygen! It’s a mystery so far!
Unfortunately without many answers! Heart scan was clear which was great news. They did another ABG which show 75% saturation, and PO2 of 5 (should be 11). They upped my oxygen and did 120mg methylprednisolone infusion. Next morning i felt awful and my lips were white, due to not being able to get normal oxygen levels from a pulse oximeter they had to do another ABG which showed i was being over oxygenated, so came off the oxygen.
By Thursday i had been off the oxygen 24 hours, my voice was coming back although still breathless, final ABG showed fairly normal results so I came home.
Still getting headaches and pain in my chest, am very breathless if i walk about and still get a bit breathless when talking, but seem to be slowly going in the right direction.
Have lung function test in a week and back with rheumatologist in 4 weeks. Will let you know if we find find anything else, but it feels like it might just be a weird lupus flare up that affected my blood being oxygenated for a bit?
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