Hi. I was diagnosed with organising pneumonia/ interstitial lung disease last year and after much steroid treatment, was given mycophenolate mofetil as the doctors felt that the lung problem was indicative of an underlying autoimmune disease that they have yet to diagnose. A while ago I suffered from excruciating joint pain in my wrists and ankles after weeks of intense headaches. Went for an ultrasound which found nothing. This passed and now it's back again. Same pattern - headaches that were extremely painful for 2 weeks and then just as the headaches lift, the joint pain is back and so painful that I can barely move. Co codamol is not working and in fact nothing is working to help relieve the pain. Also potentially noteworthy is that for the last 3 weeks I have had an intensely itchy rash on my scalp, neck, ears, chest, shoulders - looks a bit like hives but not sure. This is very difficult for me and I don't know what to do. I've contacted my ILD nurse at the chest clinic but it's not really to do with my lungs and I'm not due to see my rheumatologist until December. I have a 4 year old and a 2 year old and I am struggling to keep up with them with this joint pain. Any advice? Oh and the reason I'm on the lupus community is that I'm beginning to think that this mystery autoimmune disease is in fact lupus. Look forward to hearing anything from anybody xxxx
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