Kidney problems and dialysis: Hi all I have... - LUPUS UK

LUPUS UK

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Kidney problems and dialysis

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Hi all I have recently just joined this group, I was diagnosed with Lupus about 10 years now. However my symptoms had reduced or almost gone but now it seems like it's has come back with avegence and affected both my kidneys. Has anyone experienced this. Thanks for all the support

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Spanielmadlady

Hi.about 60% of lupus patients have kidney involvement without knowing it as there are few signs .main signs are foamy urine and labstick results.its likely you've had kidney involvement for several years.the only way to get a definate diagnosis is by kidney biopsy. I was diagnosed with class v lupus nephritis in 2018 and I am now under a kidney specialist. Xx

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Spanielmadlady

Didnt find my kidney biopsy painful.the worst part was lying still for 6 hrs afterwards !

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WinterSwimmer

Hi, I had lupus for at least seven years before it affected my kidneys in a serious way. The first time my kidneys flared, I had chemo and high dose steroids, followed by mycophenolate. Things got a lot better and eventually I had no antibodies to my own double-stranded DNA. After that, I had several years Of pretty good health, until a virus at the end of 2018 set Lupus off again. There are five different types of lupus nephritis, and I am lucky That although the sort I have is the most serious, it is also the most treatable. The other types progress more slowly, I believe, but cannot be treated as successfully. Do you know what class of nephritis you have? (Apologies for the random capital letters here, I have keyboard problems).

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Melirm

Hi, I was diagnosed with Lupus Overlap about 20 years ago and was transferred from a Rheumatology clinic to a joint Rheum/Kidney clinic about 10 years in. This was explained to me at the time as something that lupus patients need to have kept an eye on. Lupus has now affected my kidneys and I have a diagnosis of Chronic Kidney Disease as well. The damage to my kidneys caused by the lupus. It was something that happened slowly over time, but a particularly bad flare, caused by another autoimmune condition exuberated the kidney situation.

Sometime the damage is reversible and they can only tell by doing a biopsy, which has mixed reviews! I have to say as scary as they sound they really are not painful, just uncomfortable, but can tell a lot about your kidney damage.

I hope that yours is a reversible situation. Good luck. xx

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WinterSwimmer

I did not suggest biopsy. I also didn’t read the original message as saying she has had a biopsy Already. But Treatment depends on what sort of nephritis it is , surely? The poster asked if anyone else has experienced. I shared my experience and asked what sort of nephritis it is. I don’t really understand why you think I am saying anything different.

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Thank you all, yes I had an autopsy that's why I was sent for dialysis. I wanted to know if someone has also experienced this and that I can recover from this. Then someone sent me Dr Brooke Goldner's goodbye Lupus x

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Sorry auto text error I meant biopsy x

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Spanielmadlady

The reason for a repeat biopsy is to see if there is any progression of the disease as you can develope more then one class of nephritis and a biopsy is the only way to get a definitive answer.my kidney specialist had told me I may require repeat biopsies in the future and I dont think they are as invasive as some procedures..let's put it this way....I've had my lungs washed out via broncoscopy and I'd rather have a kidney biopsy.

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Spanielmadlady

Yes thank you.i have class v with some that are scoliosed. my bloods are done every month .my urine is done every appointment but never had a 24 hr collection done

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