Advice or experience - AI / Lupus and Interstitial Lung Disease

[SailingandSauvignon]

I was wondering if anyone has any experience or advice?
My mum has Lupus and also Polymyalgia Rheumatica, as well as other conditions (ie repeated UTIs)
She has recently been in hospital with very low haemoglobin and blood oxygen levels (>85% at times) and oedema
She is back at home and her discharge notes include a follow up with rheumatology, urology and respiratory within 2 months. She has ‘crackles’ on both lungs - in the base - a RHS murmur and it says she should be treated for Interstitial Lung Disease. She told me there was mention of fibrosis but she did not fully appreciate that until she read the letter and added all the pieces together. IN addition to this, she cannot take the prednisone that would be the first treatment (mental health reaction to it)
I have looked online for info, and got into a muddle as there seem to be many different forms of ILD, and medical papers discussing the association with Lupus, but nothing that is easy to digest.
She is stubborn, and it is difficult to discuss this with her/she does not want to share too much info at the moment.
If any one has any understanding, experience or knowledge of ILD and lupus or other AI disease together, and would be willing to share it, it would be much appreciated.
Many thanks

What type of lupus? I can help with SLE.

Thank you @BlueSurfer, it is SLE

Are steroids definitely ruled out? Since they can be such a quick and short term benefit, does the MH risk outweigh what they can do or can she be medicated to help that to allow the steroids to work for a brief time? Or even consider a lower dose? Do you know what other meds she has? Plaquenil can help but takes a while to build up, which is where a short term course of pred comes in so useful.

They are definitely ruled out. Unfortunately she has bi polar disorder, too. It is really well managed but steroids lead into bad manic episodes and lack of sleep, her doctor has totally ruled them out.
Do you have any knowledge or understanding of what a prognosis may be with this sort of ILD?

Hi i dont have lupus, but i do have Scleroderma which is a very very disease to Lupus. I have early ILD and take Mycophenolate a immune suppressant usually used to treat transplant patients. It basically destroys the immune system which stops the lung disease progressing and in many cases can even reverse it. Im pretty sure its used for Lupus too. Has anything like this been mentioned to your mum?

Should say very similar disease

Sorry not to get back to you
She has had a formal diagnosis now of ILD with fibrosis (6+ months of fibrosis) and dr is talking about maximising her quality of life, ensuring she’s not in too much pain. With other conditions
She can’t take steroids at all