Lupus nephritis ?: Hi I was diagnosed with lupus in... - LUPUS UK

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Lupus nephritis ?

Caramia1964 profile image
8 Replies

Hi I was diagnosed with lupus in November last year . I have been getting headaches which may be due to the brain tumour I also have, however have been feeling awful. My ankles are swollen and I constantly feel bloated with marked weight gain and my GP says I have high blood pressure! My blood pressure has never been a problem before! I feel as if I am retaining fluid. Could it be due to lupus attacking my kidneys ? I am due to get bloods done on Monday. Any ideas from fellow lupies?

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Caramia1964
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8 Replies
MirkaMglosiek42 profile image
MirkaMglosiek42

Hi

First week you have to detox your body....drinking juices eating vegetables 🥒

Celery apple ginger pineapple coconut water blend it

Everyday in the morning I know it disgustin did you heard about hot stone .You can make any juices with ginger

Shaysuekirk profile image
Shaysuekirk

Try not to worry until you get your blood work back. It can sometimes be comforting. I get all kinds of weird symptoms that last a few weeks, then they are gone. It can cause constant anxiety b/c you are so hyper-aware of your body. It seems that we are constantly checking our symptoms.

Caramia64 profile image
Caramia64 in reply toShaysuekirk

thank you , yeah , never a dull moment . you never quite know how you are going to wake up feeling on a day to day basis! will just wait and see as you say . take care and thank you for your reply , I appreciate it x

1sam profile image
1sam

But you need urine tests to discard/prove nephritis due to lupus ... and eventually a biopsy, which was my case.

Blood test (creatinine levels) are always normal for me but urine and biopsy are not; my nephrologist says that bloods come back wrong only if kidneys are badly damaged. I would press for urine tests because they help to see minor reversible damage.

Organ involvement is always a possibility with lupus, if your urine tests come back normal then stop worrying. And in the worst case scenario that yours are not, standard treatment is immunosupressants and steroids, I assume you already take some. Be brave! :) you need to know.

Caramia64 profile image
Caramia64 in reply to1sam

I get the blood tests today , but yeah can't believe they did not do a urine test ! I am not on immunosuppresants or steroids. Only on hydroxyl ....

I have started taking taking probiotics and am going to cut out coffee and drink fennel tea to see if that helps with bloating . May get chemist to test my urine for me .Thank you for your resonse x

Vamnessa26 profile image
Vamnessa26

I think you might need a diuretic and a strong corticosteroid to try and relieve the symptoms.

Caramia64 profile image
Caramia64 in reply toVamnessa26

The GP said he didn't want to start me on a diuretic just yet , he did ask if I was on steroids ( but more for my brain tumour I think), though I am not. Maybe he is waiting for results of blood tests first. I have decided though to give up coffee though and replace with fennel tea as its meant to be good at easing bloating. Also ordered probiotics and simeticone tablets too so will see if that helps at all. I have got aqua balance tablets that I may try too to see if it helps meantime . Thank you so much for your response x

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply toCaramia64

Hi Caramia64 ,

Have you discussed these complementary therapies with your doctor? I would always advise doing this so that they are aware of what you are taking and can warn you of potential adverse effects or drug interactions.

It is worth getting your urine tested for blood and protein - this should be monitored regularly by your doctor. Creatinine levels in the blood are often normal in people who have kidney involvement from lupus.

If you need more information about lupus and the kidneys we have a free booklet which you can read and download at lupusuk.org.uk/wp-content/u...

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