SLE/UCTD and now developed lung problems.

[AngelaW]

I was diagnosed with SLE/Undiagnosed Connective Tissue Disease 6 years ago. Having tried hydroxychloroquin and Azathioprine I then settled on methotrexate. All was well until I started feeling generally unwell last July, I felt like I had a chest infection. My GP sent me for xrays, which were clear and every doctor that listened to my chest said it was clear. I kept going back to my GP and went on sick leave in September because I felt so unwell (every time I asked my GP for a sick note he made me feel like malingera of the year!). To cut a long story short, two weeks before Christmas I could barely draw breath and my GP then thought I had a clot on my lung so sent me to the hospital where I had another xray and CT scan. They both showed a blockage on my right lung, the blockage goes from one side of the lung to the other and is stopping my lung from inflating. I have had 8 courses of antibiotics - usually two weeks after ending one course, start another! My lung is still the same, my rheumatologist has been great, said it could be from deep infection or due to the UCTD. I'm no longer on methotrexate, I've been put on 30mg day presnisolone which has helped my breathing a little and am due to start on Mycophenolate shortly. Had very little joy with the Respiritory Consultant I've been sent to. It is so incapacitating, I've been sleeping in a chair downstairs because getting upstairs used so much energy no to mention the breathing difficulty. Has anyone experienced problems with their lungs? Will I ever get the use of my lung back?

[Skid]

Hi Angela, I too have sle and ctd and sjorgren`sI have had a consant dry cough for about 5 years now, had lung scans,x-rays lung function test and they all come back clear. I was told by ENT exam that I had irratable osophegus,I have recently been told I now have Dermatomyositis, Have tried steroids, azothiaprin, methotrexate, now I am on mycophenolate,( have found out one of the side effects is coughing.)I sometimes am at my wits end, I am so fed up with coughing,it has really got me down as well as I seem to be consantly in a flare. I am seeing my rhuemy in may I think I will ask him for a bit more investigation into this. Enough of me I do hope you start to feel better soon, thankyou for listening to my probs. take care Skid x

[Blueberry]

Hi! My Lupus was just recently picked up due to the lung problems - I was actually diagnosed by my thoracic (chest) specialist. I had a 'chest infection'/pneumonia for 7 months through 2011-2012 - it turned out to be Lupus Pneumonitis. I've looked up lung conditions and they are really common with Lupus. (Pleurisy and blockages and collapsed lungs are well known to come along with Lupus) I'm as better as I think I'm going to get now, but been left with reduced capacity due to scarring.... I'm terrified it will just come back as soon as I get another infection but I've not been given any Lupus drugs yet as I haven't seen a Rheumy.

The steroids are what kicked my chest thing's butt! Good luck! Maybe the right combo of Lupus meds and steroids will get rid of this thing once and for all? I hope so! x

[wendymd]

Hi Angela, I totally understand how you are feeling at the moment. I have SLE and suffer from pulmonary haemorrhaging. Thankfully I have a fantastic chest consultant who has really helped. I must admit though it was 1 of the scariest things I have ever been through and it was a long 3 weeks in hospital while they found out what was wrong. My diagnosis came through a CT scan and broncoscopy, as the x-rays only showed some slight shadowing. I've suffered with this since November 2005 and after 2 flares seem to have it under control at the moment (well at least for now!!).

I do suffer with more chest infections than most people and have also gone through the antibiotic cycle on more than one occasion, but have learnt to catch it early and take the anitbiotics early enough that I usually only have to have 1 course and then get a break for several weeks (months if I'm lucky). Although I did manage to get pneumonia at the end of August a couple of years ago.

I agree that it can be completely incapacitating and also struggle with the stairs, even walking on level ground, but it has made me appreciate the good days I have, which at present far outweigh the bad.

My consultant managed to get my symptoms under control with 60mg daily of prednisolone and 3g daily of mycophenolate, both of which have been reduced although I am aware that they will go back up if I flare again, but will cross that bridge again when and if it happens, at the moment I'm breathing so its all good :0)

Luckily I don't have too much scarring and have been able to go back to doing pretty much all I did before, I go to the gym, do zumba etc, all at my own pace and ability level, and I did find swimming really helpful in the beginning. It was hard work but really beneficial.

Good luck with everything and hopefully it wont take too long to get everything sorted out

Wendy x

[pirate-yaker]

Hi Angela

I've recently been diagnosed with Bronchiectasis (can't pronounce it) which may or may not be related to my SLE. The upshot is 6 months down the line I feel much better than I have for the last 2 years (after living on antibiotics and oral steroids)

All the best and hope things improve.

Malcolm

[morlobach]

sometimes SLE and UCTD can go together with sarcoidosis ... ask your GP to check it , it is manageable... ( not curable , but well manageable like SLE)

[Gillyg]

I have shortness of breath for years with my SLE,FIBROMYALGIA AND SS. It always flares when I am not well. No doctor yet seems to be able to tell me why, like you X-rays are fine a d lung function tests are ok but it doesnt help me understanding, it is really bad at the moment can bearly work anywhere following a chest infection. Waiting for more tests. All the answers are helpfull didn't realise so many people have this problem. Wishing you all well.

[AngelaW]

Thanks to everyone who has taken the time to reply to me, I feel a little better now, sometimes it can feel so lonely. At my next appointment in two weeks time, I'll be going armed with some serious questions and a list of 'conditions' to see if the respiratory team have already ruled them out. Already thinking of changing to a more specialist clinic/hospital. I wish you all well, take care.