Following rheumy appt I was put on prednisolone 40mg and hydroxychloroquine 400mg a day. I came down with a common cold within 2 days and then due to asthma and previous pneumonia problems ended up in a&e with chest infection and fluid in my lungs. I've been on 2 different sets of antibiotics and the chest problems keep returning, mainly coughing up mucus and pain in back of chest, out of breath easily, the mucus builds up within days of finishing antibiotics. The last chest X-ray was clear but when the gp listens it still sounds like fluid. Tapering down the steroids and now on 20mg a day and the joint pain is returning, I'm not sure what to do, any thoughts?
Thank you
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Pennypug
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Sounds like the steroids have lowered the immune response (which is what they do) and that let you open to viral attack. I don't think there is much more you can do at the moment but let your body fight it, it will get better once the steroids are being lowered.
This is the problem with lupus, we take medication to reduce its impact but we upset the balance of the rest and end up with something else. It is trial and error, though, medication for lupus at present isn't that refined in its application, so you'll go through few permutations until you get to the right combination for you.
Sounds fairly serious to me Penny. It may well have begun as a common cold due to compromised immunity but mutated into pleurisy, in which case lowering the steroids is the wrong move. I assume, since you were put on an extremely high dose of prednisolone by your Consultant, your SLE was particularly active when you saw him or her and required aggressive treatment. Difficult, therefore, to rule out SLE>pleurisy (which I've had several times and recognise your complaints - although doctors usually hear a "scratching" sound from the lungs rather than the dull sound of a build-up of fluid). If it's a nasty chest infection, that should not be left either as it will cause scarring to your lungs and, potentially, serious future problems. Did A+E test your blood for infection? Was it tested again after you were treated with antibiotics AND deemed clear? Since you've already had 2 courses of antibiotics I'm thinking not and that this would be a good starting point ... simultaneously your blood should be tested for anti dsDNA antibodies to exclude SLE lung involvement. IME, we lupies often have to make quite a fuss to get the investigations and/or treatment we need so I do hope you'll follow this up. Good luck, hugs and let us know how things turn out x
The initial blood tests in a&e showed infection, but since then Iv seen the gp only. Gp asked me to go back in a week if it started to get worse after the second set of antibiotics. I know from experience what to look out for with pneumonia but don't know about pleurisy? I'm not back to rheumatologist for 3 months. Iv found it difficult to get help with SLE from GP.
You're welcome Penny *Probably* not pleurisy then, which is good, unless it developed subsequently to your blood test showing a bacterial infection - you never know with this wretched disease, especially during a bad flare. Were you told whether they also tested for a/dsDNA a/b's? Bearing in mind your serious on-going symptoms, I consider it's verging on negligence that no-one followed up with a blood test to see whether the bacterial infection fully resolved after 2 a/b courses but, knowing how things generally go, am not surprised. I wouldn't leave this longer than Monday. You may have to be more assertive with your GP in order to protect your long-term health! Here's a link re. lupus and the lungs, just for your information: hopkinslupus.org/lupus-info...
Thank you for the information. Unfortunately Iv got no idea what blood tests they have done, but the rheumatologist was very helpful and able to diagnose SLE and get me on treatment straight away, after years of problems at least I now know what it all is and the steroids have had a huge impact on the joint pain - I can now walk! I now need to educate myself around the blood tests/results and push the GP when I'm not right.
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*Probably* not pleurisy then, which is good, unless it developed subsequently to your blood test showing a bacterial infection - you never know with this wretched disease, especially during a bad flare. Were you told whether they also tested for a/dsDNA a/b's? Bearing in mind your serious on-going symptoms, I consider it's verging on negligence that no-one followed up with a blood test to see whether the bacterial infection fully resolved after 2 a/b courses but, knowing how things generally go, am not surprised. I wouldn't leave this longer than Monday. You may have to be more assertive with your GP in order to protect your long-term health! Here's a link re. lupus and the lungs, just for your information: 
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