Has anyone been diagnosed with interstitial lung disease due to Lupus? How is it progressing/ effect of medication ?

[anne59]

I've been diagnosed with interstitial lung disease for 2 years now, and have remained stable on a triple therapy of Prednisolone, Azathioprine, and N-acetylcystene. My concern is that a flare of lupus may suddenly cause a deterioration in this illness or is this now a progressive illness in its own right so to speak, and not necessarily affected by the Lupus ?

[chrisj]

Not familair with that one Anne. I suffer shortness of breath because of Lupus and was diagnosed with asthma a couple of years ago. Sorry I cant be more help....

[kimmyw]

I was diagnosed with Lupus about 15 years ago and lung problems were one of the first symptoms they took seriously. I was initially told I had fibrosis on my lungs when they did a CT scan but that this was probably due to smoking because this was not a lupus symptom. However, follow up CT scans shows the fibrosis had reversed itself! I moved house about 5 years later and with the change of hospital had a CT scan done, this time I was told I had Interstitial lung disease. My xrays were sent off to a specialist who this time said this was caused partly by lupus but most probably smoking. Was started on Azathioprine and over the next year, this improved enough for me to be discharged by chest specialist. I now have regular check ups and this year again my lung function tests showed a decrease in the transfer of gases and I was put on a course of Prednisolone and Cyclophosphamide infusions. My last lung function test showed an improvement after this course of treatment and I am now back on my standard Azathioprine. I am now told however, that in a small number of Lupus patients, Interstitial Lung disease is a symptom.

I seem to get a flare up of this about every 5 years but so far the treatment I have received seems to get things back under control. I am not sure if things are worse each time I have a flare, but I suspect this is the case although the damage I notice to my lungs and breathing seem to be minor so I think it is a very gradual reduction with me.

They way I deal with lupus is to deal with one symtom at a time, read as much as I can about it and listen to other Lupus sufferers, I tend to find out more this way than through doctors. The trouble is that they just "dont know" so much about the disease that until a set number of people have turned up with the same symptoms they dont accept that it is lupus related, even when we know it is ourselves. Even then as no two peoples disease progresses the same way they wont commit themselves on prognosis.

[anne59]

Very useful thanks.

[laurawelsh]

if you have suffered fromthis and needed medical support for longer than three month then you can claim dla the level you will get is down to what help you need with all the different symptoms you get with this hope that helps a bit x

[anne59 in reply to laurawelsh]

Thanks I must be one of the lucky ones who's been on DLA since I had to take early retirement due to ill health (my Lupus) a few years ago. It appears from this site that it may now be getting harder to claim successfully.