Lupus nephritis

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Hello everyone!

I'm new here, I'm looking for a little advice, maybe some reassurance until my next rheumatologist appointment.

I'll keep it short and relevant to this forum. I've been under investigation for an autoimmune disease called Lupus for the last 6 weeks. I've had a very rapid, aggressive onset. however until my next rheumy appointment on the 22nd November im currently not on any medication.

I've had a few sets of bloods checking kidney function. Prior to this, my GFR has always been >90 and creatinine around 60 - perfect!

Since A&E with first symptoms of Lupus this has been my results -

26th Sep 17 - GFR 77, CRT 78

2nd Oct 17 - GFR 75, CRT 80

25th Oct 17 - GFR 67, CRT 88

BP always around 139/94

I'm a 26 year old female, 60kg with a height of 160. So as you can see I'm not over weight and very young! My diet is fantastic and I'm healthy! Well I was healthy until Lupus started eating me alive!

Itl be exactly a month after my last set of bloods with a GFR of 67 when I next see my rheumy, its only took a month for my GFR to go from >90 to 67 so I dread to think what itl be when I'm next in.

Also my NA sodium levels are below the normal range. And if you can see the pattern there with my CRT going up at the same pace as my GFR going down.

Has anyone experienced Lupus nephritis before and how long did it take ?

Thank you! Lots of love and healthy vibes to everyone, Jaz xx

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5 Replies

  • Posted

    You may need to do kidney biopsy to confirm for this. 

    I have lupus nephritis since I was 11. 

    Initially I was alright and my kidney function is very good around 50. 

    But then a few flare of my lupus and also doctor didn’t prescribed me strong medicine.

    ended up, I have kidney failure with creatinine 524 now,! 

    Pls don’t miss your medicine and follow strictly on doctor advice!

  • Posted

    Hi Jaz,

    You have a tough call, and it is frustrating having to wait for appointments hoping that some expert will say something helpful! 

    My kidney problems are from a different cause, but it is worth saying that even with a eGFR of 30% I still feel fine. I think it is lucky that your problem has been identified early, and there are medication routines to slow down the disease progress, as it is very similar in character to someone who has just received a transplant.  I think you may find that you have to keep pressing for action, as our medical services are much under pressure, so keep trying to get things agreed.

    Hopefully you will be fine, but expect to be eating a good lot of pills!  If you find that they have an adverse effect get straight back to the GP for a change of meds!



    • Posted

      Thank you both for taking the time to read and reply to my post.

      Yehyeh I'm sorry to read your post, such a young age and a whole life time ahead to suffer with Lupus. I hope you've got it under control with the correct medication.

      KenR, I'm also sorry to read you suffer with KD. . I know that the kidneys being under attack is very common in Lupus and although I'm well within the normal range of kidney function and I feel absolutely fine regarding the kidneys, there is an obvious decline happening in my blood results.

      I also have Neautrophenia (another common symptom of Lupus) so for the last month I've just had infection after infection. I'm currently experiencing a burning / stinging sensation when I pee (sorry to much information) so I think I probably have a UTI. I feel slightly let down by my GP because he did not tell me I have Neautrophenia!! Had I of known, I would of taken extra care to prevent myself becoming ill. Complication of me having an infection is that it kicks my immune system into "kill mode" and any part of my body can be attacked.

      I agree with you about our NHS being under pressure! I feel extremely lucky to have the services we have here in the UK, compared to America for e.g. however, after paying tax towards the NHS my whole adult life I do feel as though I'm only important if I'm carried in on a stretcher! I've had no dietary advice to help prevent Lupus nephritis, im also suffering GI problems so so bad, I've lost all of my hair, 60% of my vision and much much more. I stress to them that all of this happened in just 4 weeks, please do not leave me for another 4!

      They did advise me that the medication is extremely strong and is used to treat cancer in some cases and also as you said organ transplant rejection (immunesepresents) and it's vital that the correct medication is used as it could have deadly side effects. I appreciate this. However, just a little bit of advice in the mean time would of been nice.

      Sorry for the long post! I think I must be venting ha! Enjoy the rest of your Sunday both xx

  • Posted

    I think they suggest you iv cyclo. 

    Will, this will help for your kidney. 

    Kidney function worsen, hair loss, fever, leg swollen and fever is the symptoms for lupus. 

    • Posted

      Yehyeh I'm not sure what you mean by iv cyclo, what is that ? Are you on immunesepresents for your lupus ? If so how do you find it ? I really don't want to go on immunsepresents but obviously will if I have too xx


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