What to do about breathlessness

I have APS, possible Sjogren's and I'm also now suspecting either Lupus or Vasculitis.

Over the last 3 months or so I've had far worse fatigue, terrible mental fatigue/fog, balance and coordination problems and breathlessness, which is possibly the worst symptom. I even wake up breathless. It's not extreme, but it's still very bothersome.

I've had steroids. 10mg/day initially, now 5mg/day. Energy is better (even better on 10mg than 5mg) but still breathless. Also a bit depressed - which is most unlike me and I hate feeling down. Is that the steroids??? And the steroids also make me feel wired, so difficult to sleep - so more fatigue, yadayadayadayada...

Not sure what to do. Any suggestions? I'm thinking of trying 10mg/day prednisolone again for, say, a week to see if that helps with the SOB. And, if not, talk again to my GP. Maybe ask for further tests - perhaps to look into vasculitis.

Could this be a reaction to prolonged stress? We have two - well, we HAD two, we lost one in July - elderly poorly cats, who've needed constant care, vet visits, worry and expense for over 18 months. Is this an AI flare in relation to stress? Could that explain the SOB? Usually when I get a flare, there's joint/muscle aches and pains, but none with this episode.

It's all just a bit muddled. And brain fog doesn't help UNmuddle it!

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  • I am sufferring with this breathlessness too and have seen my rheumatologist about it, I agree that is more debilitating than pain, sometimes. I think that firstly one will look at the possible causes that can be checked by tests, such as CT scans or ultrasounds of heart, lungs, etc. If those are normal, then the diagnosis becomes more difficult. These scans/tests can only "see" so much, if there is any residual inflamation for example that might not be detected but could still cause issues. I am not sure what triggers mine yet, last night for example I was fine one minute, I had 3 chocolate bonbons and within 5 minutes after the last bonbon I couldn't breathe. That lasted until i went to bed, still slightly breathless now. No idea whether the chocolate caused it but one tries to see patterns.

    You mention upping your steroids dosage - I wouldn't do that without talking to a specialist. Steroids artificially replace the naturally produced ones by the body's adrenal glands, you need to be careful what you're telling your body to produce or stop producing, or you will have side effects. I am not sure a GP would be the right person for this, can't you get referred to a rheumatologist?

    I hope all gets better. This thing is so unpredictable, I am just starting to get my head around that too. The brain fog is another dreadful symptom, my job relies on my mental focus, I feel robbed each time I can't express myself properly.

    All the best!

  • Hi, thanks for that. I do have a rheumy, specialising in Sjogrens and Lupus, allegedly. I'm not sure how much I trust her yet. But in any case I'm not due to see her again until November.

    I 'hear' what you say about depressing natural steroid production etc. and I obviously wouldn't play around with dosages (or indeed be allowed to) for long. But it's no good going back to GP till I'm armed with more information really. Have had several lung tests already and am awaiting results and a possible bronchoscopy.

    In terms of reactions, I know I get palpitations with chocolate, and alcohol (are we allowed to have NO fun?! :-)) but not necessarily SOB in reaction to those. Another mystery.

    Like you, I also need to have a clear head for my work - freelance academic editing!! Word blindness/nominal aphasia (though, irritatingly, I can always remember the term for THAT!) don't exactly help.

    I read that vasculitis can cause SOB. It can also be confused with pneumonia and I was diagnosed with severe pneumonia last year - even when I felt perfectly well, had no fever, refused admission and rushed off to choir rehearsal, etc etc. I didn't believe the diagnosis then and I'm starting to seriously suspect vasculitis was what was actually going on. It could possibly even be my primary diagnosis rather than either Sjogrens, Lupus or even APS.

    Though I'm also coming to think that maybe these conditions are being rather arbitrarily/artifically differentiated from each other and that in fact they all blend into one - like different flavours of ice cream as opposed to completely different 'delights' - if you see what I mean!

    Anyhow, let's stay in touch and compare notes on the SOB front.

  • But do you have other vasculitis symptoms, the clotting etc? I tend to agree with the blurring of the lines between the differently labelled conditions but the idea that all these symptoms are part of one big problem that can manifest itself in many critical and unpredictable ways is scary. I feel like going back a year when I only thought I am just tired because I've worked too hard and forget about everything i have learnt since then. Let me know how you get on. I am having the breathing function analysed next week, I'm almost tempted to have few chocs before the test so that something shows! With the alcohol, it is interesting, one or two small glasses of white wine improve my breathing slightly but yes, if I exceed that the breathlessness returns.

  • Breathlessness is a major symptom for me as well, however, I have chronic anaemia associated with my lupus/sjogrens and I was wondering whether you have been tested for this? Mine got so severe that it affected my heart and I was hospitalised for a few days a year or so back - it all came out when I had a bout of pericarditis (inflammation of the membrane around the heart) - I also get palpitations when I'm getting bad. I take iron tablets (although I try to take them for a couple of months and then have a rest for a couple of weeks and then restart again - totally unscientific but I find I can't take them continually). I was misdiagnosed for several years as having asthma so it's worth checking out if you haven't already done so.

  • Anaemia was my first thought too but tests said 'No'. Can't take iron at all - completely bungs me up. And that's a big enough problem to start with, without adding to it. Prune juice and sauerkraut for me on that front! (Not together, you understand, that would be just silly!) Also, carbocisteine - for sticky lung secretions - helps with the bowels too.

    Was also treated for ashtma for a while, but it's not that. I

    Did have pleural effusion at one point, but that was some time ago.

    Jury's still out, basically! But I'm fairly convinced it's some form of inflammation in the lungs. Ah, but what's causing it?!?!

    I'll be back!

  • I have SLE and Sjogrens and the lupus has damaged my lungs (pulmonary fibrosis) which causes breathlessness. If I am sitting down and get up too quickly I get breathless, If I laugh or get excited I get breathless. I have to think about the things I do each day as just walking is a problem.

    I would suggest Coppernob that you contact your Rheumatoligist who should be able to send you for a lung function test for further diagnosis. I was diagnosed after been very breathless with pain in my lungs and frothing of the mouth, my Rheumy was very experienced and he just listened to the base of my lungs and immediately knew what is was. Even now if he doesn't tell a junior doctor where and what to listen for they miss it (and that includes GPs).

    I also have vasculitis but that is not affecting my breathing. I am taking 10mg of steroid but was on 20mg for two years as I needed to travel by air and that was a problem for my lungs (the pressure in the aircraft cabins was causing me to pass out) Each time my Rheumy tried to reduce the amount of steriod I was taking I just got worst until I had IV Cyclophosphamide last year and it helped a little, so now I went from 20mg to 10mg without the distress I was in before.

    If you have SLE it can damage the organs of your body.

  • hi i have breathlessness too i find ventolin inhalers every day really help. I also gave dairy up a year ago as I had a significant allery and it has also helped. sadly this doesnt stop inflamation but it has made a difference. take care

  • Thanks Maureenpearl, I've already had lung function tests and my chest consultant wants me to have a bronchoscopy for further investigations. Which is fine - but we're fighting about how to do it because I'm refusing to have it done unless under GA.

    I am also finding that 10mg prednisolone/day helps a lot, tho I'm 'supposed' to be only taking 5mg and reducing. I think long-term steroids may have to be accepted by everyone (i.e. me, GP, rheumy, chest physician, etc.) eventually. Though I also have osteoporosis and wont take/can't tolerate any of the orthodox drugs for that, so that's a worrying complication.

    Due to see rheumy in November so will of course discuss all this with her then, but am reasonably comfortably with just ticking over on steroids for now. Will want vasculitis looked into, also lupus.

    I shall update as and when more info comes to light.

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