Lupus/pulmonary fibrosis

Hi, Im after some advice really. My mum suffered with discoid lupus since 2009, but generally her symptons were quite mild, comparing to others, she was given cream by the dermatologist and then left to get on with things. The last year she has been having breathing difficulties and on Friday was diagnosed with Pulmomary Fibrosis which is probably linked to her lupus (says the Dr). I just wondered if anybody else has this, as the Dr said it is very rare. Thanks

2 Replies

  • Hi. I have pulmonary fibrosis and bronchiectasis. It is quite rare but is seen with lupus. I have systemic lupus so different from your mum. I had x-ray then ct scan then lung function test. I was told after this that I had moderate fibrosis and not to unduly worry. Keep as healthy as you can, exercise if you can and keep weight down to give lungs best chance possible. Hope your mum gets on ok and gets no worse.

  • Hi, I was diagnosed in 2006 with lupus but before that from the Eighties I was having problems with my breathing and at one point I was told I had asthma but the treatment did nothing for me so was later told it was not asthma but my lung function was not normal.

    I felt during that time that I was an hypochondriac and some of my GPs were treating me as if I was.

    Eventually I saw a doctor privately who said I had ME, this diagnosis seem to change the way the GPs manage me. I then went into remission until 2004, when I went back to work after my children were at senior school. I started to get all the symptoms of lupus and the breathlessness started again, this time worse than before.

    2007 I was diagnosed with pulmonary fibrosis after having lots of pain in my lungs and not able to walk any distance without been breathless.

    I am now on ambulatory oxygen and have just been given the funding for the drug Rituxamub, which I will be having after I return from my holidays in June. I have had Cyclophosphamide (chemo) but the effect only lasted a few months and then I'm back to not been able to breathe normal.

    My consultant has never said that pulmonary fibrosis was rare. I now go to a combined clinic I see a Rheumatologist along with a Respiratory consultant, so I had to change Rheumatologist (which I have done three times).

    Hope this helps and praying your mother will get the best treatment and help as and when needed.

    God bless


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