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My name is Kirsten Eggleton and I have had SLE Nephritis since 1992. There was also involvement in inflammation of the brain and severe joint and muscle pains. The worst episode was around spring 1994, where I collapsed in my flat in London and was in a coma for around 2 weeks. The treatment was Chemotherapy, immunosuppressants, steroids etc.
It then went into remission until 2003, when suddenly my kidneys started to malfunction. The syptoms were totally different this time, which is why it I did not realise until it was almost too late. Again, treatment....remission. Kidney function 35% left!
And again recently it has been discovered that my Kidneys are starting to play up again and am currently waiting to go into hospital for a kidney biopsy.

This illness seems to be very unpredictable, and every spell is different. Does anybody had similar experiences?

I am also interested in Chinese Medicine. Is there an established treatment in terms of Acupuncture and/or Herbs, which might help keep this abay?
 

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Welcome to the site - but of course I'm sorry for what brings you here.

Lupus certainly can "change hats" for many of us... I guess it's not called the disease of 1000 faces for nothing!

As for the herbs, I don't believe there are any currently recognized/approved to treat lupus. Moreover, there is a possibility they could harm us... Some people here do believe greatly in accupuncture helping their joint pains in particular and lessening fatigue. However, I have not heard anyone believe it's effective in preventing lupus nephritis. Anything is possible, but nothing is proven really on these fronts right now. I would definitely consult with your doctor's before trying any herbs to treat lupus.

Good luck to you and welcome to the site again.
 

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Hello Kirsten, Welcome here. You have had some bad times. I hope the biopsy brings better news.
I don't know of any herbs etc. but a good mixed diet never does any harm.
Could I also remind you about sun protection-most important even if you do not get rashes.
x Lola
 

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My name is Pam and I have been reading on here for over a year. I have learned so much, and I just posted for the first time. This site is very helpful and helps me stay informed in ways to talk to my Doctors. I have a rhemy and somewhat of a DX, although the Lupus, as she said, is one criteria away from the actual label. However, we do have a positive ANA, and DX for inflammatory arthritis, fibro, MCTD, and a curvature in my lower back (which I think she referred to as spondilitis-whatever that means),

Anyway - I am thankful I found this site. :)
 

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Hi kirsten. I also have SLE, I was diagnosed in 2002. It was a shock at the time after being so ill for so long. I also had so much pain, and I had to have chemo for my kidneys as well as being on steroids, which i'm still on a small dose of now as well as MMF.
I suppose i'm lucky in a way because I don't have much pain now. The only pain I have is every so often in my back, neck and shoulders.
I am also awaiting a kidney biopsy, i've already had two.

I hope things get a little better for you x
 
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