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I've recently been diagnosed with Stage 4 Lupus Nephritis and I'm still trying to understand what changes I'll be going through. So far I've had the pains in my knees and ankles so bad that I've had injections, rashes that cover big parts of my body, and weight gain in my face. Now I've been having pain in my left hip that pain medicine doesn't really help and a rash that is causing blisters down same leg. Can anyone else relate or explain this? I'm trying to ignore the pain and live a normal life.

5 Replies

  • I am sorry you are having such a crap time,

    Gentle hugs

  • Hello there , I understand where your coming from ,as I to get the rashes ,and the pains in my hands hips leg and arm and knees. are you taking any meds to help you with this .go back and see your doctor .its hard at times to cope with all the pain and aches and how it effects us on a daily routine.this is a great site to help you cope and express how you feel , as we all in the same boat . We can all learn from each other . Hope you have a good day 👍😀

  • Hang in there. I have had stage 4 lupus nephritis for 18 years. Theyll probaby put you on meds to minimise damage to your kidneys. Mine are still working ok even after 18 years! Always discuss everything with your renal consultant, who for me took over managing my lupus from my rhumy.

    Best wishes Eddie

  • Hi BTaylor, I've been an SLE sufferer for over 25yrs. Before my diagnosis I too had terrible joint pains - all the doctors could offer me were high doses of Pred which didn't work. I was desperate and went to visit an acupunturist, which was not looked on kindly by the medical profession all those years ago. The acupuncturist told me that he could help my pain but not the underlying autoimmune disease (the first time I'd heard that name). I had three treatments which got rid of the joint pain completely and to this day it has not returned. Despite acupuncture being mainstream in most hospitals, it is important not to go ahead without getting the OK from your Lupus doctors. Can't stress how important this is! Good luck xx

  • Hi Btaylor7809,

    Welcome to our community. I'm sure that you will find it a useful source of support and information. If you would like more information about lupus, we have a free pack which I can send you. If you send me an email at or send me a private message with your name and address then I can include our booklet about lupus and the kidneys too.

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