Lupus and fibrosis advice

Hi just recently been diagnosed with Lupus SLE and left lung fibrosis due to late diagnosis (although they seem to think they've caught it early?) I'm about a month into lots of medication. At the moment I have an awful cough which is worse at night. So I am exhausted during the day. Phoned and spoke to my rhumy nurse who said that if I bring up funny colour mucus or am breathless to see my GP. I am bringing up cream coloured mucus (sorry too much information!). Not very trusting of my GP at the moment due to misdiagnosis (was told had ME for 14 years). Just wondered if anyone has Lupus and lung fibrosis and whether they can give me some advice. Sorry for long explanation just a bit new to all of this and still getting over the rollercoaster ride that this last 6 weeks has been.

[Mollie01]

Hi tallyho2019

I too have SLE diagnosed 2005 and Pulmonary Fibrosis diagnosed 2014. I have fibrosis in both lower lobes. Initially I was like you awful cough and breathless. But 5 years on although I have lost some lung function over the years I have been stable for the last year. I now take 5mgs prednisolone maintenance dose and 2g Mycophenolate. This combination works for me.

I attend a local Chest Clinic with a specialist in Fibrosis. I find my GP and rheumy really doesn't know much about it as it such a specialist subject.

Hope I can help if you have any more questions.

Take care Mollie xx

[Hidden in reply to Mollie01]

Hi Mollie thank you for your reply. I am on Mycophenolate 1000mg twice a day, 15mg lansoprazole, 500mg naproxen twice a day, and 75mg thyroxine. My cough is just awful at night so keeps me awake. I bring up so much mucus stuff which is a bit scary. Do you think I should see my GP about the cough? I did phone the hospital about it but they said to contact my GP if it is green. It's all so new and such a shock too. I really appreciate your reply, thank you. You take care too xx

[Zoe-mabel in reply to Hidden]

Hi there Tallyho ! I have had SLE since 1996 and have had many ups and downs over the years. Pain, fatigue and skin rashes have all been present for much of this time. When I started coughing in about 2007 it was just another annoying symptom and I very easily got chest infections.

The breakthrough in my management of this cough was in 2011 when I saw a lung specialist (NHS) who diagnosed the fibrosis of my lung and recommended I saw a chest physiotherapist. I had to find a private expert for this but only needed to see her about 6 times. She has taught me to change my mindset about my ‘terrible cough’ and the embarrassment of coughing up sticky lumps of mucous .(...it sounds like yours!) Coughing is GOOD because it gets rid of all this rubbish that so easily becomes infected. She taught me breathing exercises that enable me to clear my lungs twice a day.

Nights can still be difficult ( you wake up dreaming you’re drowning??) but raise your shoulders in bed, and try to clear the lungs before you sleep. It is not always easy, and the white/ yellow mucous turning green is indeed an indicator of an infection that needs treating. Fortunately for me the raised awareness of my breathing and then gradually increasing my exercise levels has also improved my mobility and joint pains. I am no longer on steroids or Azathiaprine and my lung specialist monitors me 6 monthly. He is surprised that I am now walking 5-6 miles daily. I take Carbosisteine twice daily to make my mucous more fluid. I have also cut down considerably on dairy products. No cows milk, cheese, cream or yoghurt as they are not good carriers of mucous and can aggravate coughing. Drink plenty of water to replace fluid .

I wish you the best of luck with all of this. It may reassure you to know that the fibrosis may not necessarily be progressive. My lung function tests and scans show little change for 5 years now. X

[Hidden in reply to Zoe-mabel]

Hi thank you will take on board all what you've said. I was told it will take about 3 months for the meds to start working. Seeing my specialist nurse on 11th September so will see what she says too. Thank you for your reply its much appreciated! xx

[Mollie01 in reply to Hidden]

Hi I really feel for you as this is so new to you. I think you should go and see your Doctor and discuss your concerns. At least if you get a sputum pot and lab form you can have it investigated.

It did take a while for me to settle my cough higher steroids and a lower dose of mycophenolate initially and now lower steroids and higher mycophenolate works for me. Do you have a Specialist Nurse as a contact point.

Have you joined British Lung Foundation within HealthUnlocked there is a few people with Fibrosis and they all have so much more experience and help to give.

Like Zoe-Mabel advises I too had physio regarding coughing breathing etc but this was all through my Specialist Nurse.

Take care and let me know how you go on.

Mollie xx

[Hidden in reply to Mollie01]

Hi yes I do have a Specialist nurse as a contact point. When I told her about the cough she just said see the GP. The GP says cos I am under the hospital I have to contact them. My GP surgery is awful. Seeing the nurse on 11th September so will see how I get on over the next couple of days if not will get a GP appointment and take it from there. Thanks again your reply it is much appreciated! xx