Can anyone give me reassurance?

[janann]

I have lupus and have just been diagnosed with pulmonary fibrosis and bronchiectasis. I am having a lung function test next week to see how bad my lungs are. They are pretty scarred but was told I seem to be on the moderate scale of the problem. I am really worried and hope someone with the same problem can stop me thinking I am going to end fighting to breathe. Please help.

[CaseyRed]

I also have bronchiectasis but it was diagnosed before the Lupus and then helped lead to the diagnosis. I was very worried too but have found it is not as big a problem as it seemed before I was on meds for Lupus. It helps me to see it as a 'symptom' of the Lupus. I hope the tests go well and you have some reassurance. Good Luck.

[janann in reply to CaseyRed]

Thank you for your reassurance. It is my sle that has caused this but I just had a bit of a wobble and panic but after your response and others responding I feel much brighter so thanking you everso for putting this into prospective

[Hidden]

Hi Janann

I recognise your worry - sounds v familiar.

I've had diagnosis lupus for 16 years - initially sub acute cutaneous form, but confirmed as SLE about 10 years ago. Then 7 years ago added pulmonary fibrosis and bronchiectasis (and various other bits and bobs - raynauds, anti-Ro anitbody problem (bad for pregnancy - but I've had 3 kids nevertheless), and in last 18 months lupus rheumatoid arthritis has developed. I was very worried when I first had the lung issue diagnosed.. But on balance I'd say its not as bad as I feared. I have bad patches for sure - endless chest infections, (just recovered from chest that turned into flu actually), a cough that never goes away and which can be exhausting and added costochondritis to my list (sharp rib pain caused by coughing) and pleuritis, and sometimes haemoptisis (coughing with some blood). I have regular of lung function tests, x rays and ct scans and am under care of both lung and SLE consultants who both are good. I do try to insist on seeing the same actual doctors - since shared management is already hard enough I reckon - too many opinions makes things erratic. And I find that GPs are often quite freaked/clueless or useless with all this going on. So it is good to get clear advice from your lung specialist on what to do if you think you are coming down with an infection - e.g, you are not the 'normal' person who should wait and see if its 'just a virus', but GP should give antibiotic asap and, if necessary, steroids.(or increase while you are ill). Since confirming pul. fibrosis, I've been on prednisolone, hydroxychoroquine and mycophenalate mofetil - but the latter proved to be not working about a year ago - though that came to light because I developed RA rather than because of lung change really - my lungs have been relatively stable - only minor deterioration in function in 7 years of testing - though some aspects are 50% of normal person's function! So I will start stronger immunosuppression soon (rituximab). But to put this all in context - I still manage to work at 3 freelance jobs, so equivalent of full time - admittedly quite a lot from home, and have been busy raising 3 kids - who were just 2, 7 and 10 when the pulmonary fib was confirmed, and whilst I am am really unfit, I do cycle, swim and walk from time to time - should do more of that, as especially uphill walking (even the slightest incline!) really reveals my lung difficulties compared to the family. I hope this realistic picture of living , relatively 'ok' with SLE and pul fibrosis helps you - of course it will be different for everyone. Don't underestimate how much time it takes to process your illness psychologically - feeling fed up, angry, useless, in denial, catastrophising 'the worst' etc. This forum is REALLY good for helping to see that this is important processing and normal!

Finally - non medical things that help me include drinking lots of water to keep lung secretions clear,visits to seaside (even in winter - salt air is good) and trying to learn to cough differently using 'active cycle of breathing technique) (ask for a physio to teach you this).

Good luck with your tests and treatment. Keep well!

[janann in reply to Hidden]

Thank you for your reassurance I was diagnosed 2 years ago with sle and I seem to be having a roller coaster of a ride. I had a hip replacement and bone grafts due to the lupus complicating my osteoarthritis but was not ready for this diagnosis. I was thinking I was on borrowed time but you have given me renewed fight. I have a great rheumatologist and now a chest specialist who will see me in the same clinic so anything I need will be available immediately so I consider myself really lucky. I also have an amazing gp so the future now seems a bit brighter. I will be seeing a physio so as you say I will be helped with the cough as it is very tiring. I thank you so much for your candid reply and hope your future is a long and happy one. Have a great Christmas and new year

[Purpletop in reply to Hidden]

Goodness me, I don't have all your problems and frequently feel sorry for myself (I know, pathetic, really) - you inspire me with your determination, thank you.

[Hidden in reply to Purpletop]

Oh - I can do 'sorry for myself' , believe me!

But I think we should be sorry for ourselves sometimes - it can be a healthy way of reacting to ill-health! Our illness is about 'attacking' our own immune system - so there's a lot to be said for trying to be kind, soothing, compassionate towards ourselves, rather than beating our selves up further for being unable to cope some days.

I guess the trick is to wallow and then find ways to re-focus/distract ourselves, & see the bigger picture. Sometimes I imagine how awful it would be to have SLE and live in a country with a different health system, or worse still,have SLE in a war torn country.

Hope you find a balance - your supportive comments helped me today!