Has anyone had any kidney problems since being di... - LUPUS UK


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Has anyone had any kidney problems since being diagnosed with Lupus?

kirstyleigh profile image

Hello all, I'm freaking out a little since having my diagnoses confirmed. This whole lupus thing is driving me a little insane. Im getting really paranoid about my health, looking up the damage that lupus can do I'm convincing myself maybe that there is a problem with my kidneys, however i am actually waiting for a kidney ultrasound due to previous problems such as; frequently urinating, I would get the feeling that after urinating i would still need to go but i didn't. I have constant back ache anyway, but have been feeling pains and aches down my lower back around the area your kidneys are at. I did get put onto a course of antibiotics for a week to clear any infection but i still haven't received my letter for the kidney ultrasound, and i am still getting pains. Has anyone experienced anything like this since having Lupus? It could be that I'm just worrying and overthinking things, which i have a habit of doing. But any advice would be appreciated. Thank you. Love & light. x

21 Replies
LupusAdmin3 profile image
LupusAdmin3LUPUS UK

Hi kirstyleigh,

Welcome to HealthUnlocked and the LUPUS UK community, i hope that you are settling in well and are finding the forum helpful.

If you think it would be beneficial to you i can happily send you an information pack which includes some booklets and leaflets on the condition as well as a copy of our 'News & Views' magazine which features all the latest and up to date news within the lupus community. I can also include our factsheet on 'Lupus and the Kidneys' for you too. Just send me a private message or an email with your address and i will pop one in the post for you. hayley@lupusuk.org.uk

If there is anything else i can do for you please do let me know.

Best wishes,



Thank you Hayley_Winter, That would be very helpful. I appreciate it. I will send you an email now. Thanks again. x

I think the big shock comes with finding out that we are not invincible.

I have had renal and a few other things as well but it doesn't mean that everyone will all suffer the same. Its also true that worry will not help in this regard. I have adopted a semi laissez faire attitude these days. I do what I can to look after my health as much as possible but try not to do the what ifs. They don't get you anywhere anyway.

Its best to have routine monitoring but to concentrate on the here and now. If there is a problem then deal with the problem in hand. The rest may not happen.

There will be plenty of advice forthcoming from others who have specific problems to help you IF they hit.

Worrying wont improve things

Hi Kirsty

I am sorry that you are so worried about your kidneys. It certainly is scary when you read all the ways which lupus can effect our bodies.

I have kidney involvement with my lupus but have never had any pain from it. In some of the lupus books I have it describes this as a 'silent' problem, because many people don't know they have got it even when it becomes quite advanced.

So please try not to worry about what you are feeling. Your rheumatology dept will check your urine & blood for signs of kidney damage each time you attend. Their aim is to catch the problem early & treat it effectively. I seem to remember the radiologist telling me the kidney ultra sound is to check the basic structure of the kidneys, & that there are no lumps or bumps. Also that you actually have 2, as some people can be born with only one & still function completely normally.

If any kidney problems are suspected your rheumy will advise a biopsy so that they can tell exactly what the lupus is doing in there.

Of course you must get the pains etc checked so that it can be treated effectively & improve your quality of life. But please try not to worry, if there are any kidney problems the doctors will spring into action quicker than you can say lupus nephritis & sort you out, as they did with me.

Very best wishes. X

The internet can be the worst thing in the world. 20 years ago the information on the net about Lupus was mainly that it will kill you. It was not true then and not now. The major problem with the internet is not everyone's experience will be the same. I have Lupus Nephritis diagnosed in 1991, before I was diagnosed had pain in the kidney area and still get it now occasionally. My Kidneys were working at 5-10% in 1991 and now they are around 40-50%, even if it does seem that it is very bad, it will get better.

You have had an ultra sound so any problems you may have will be picked up and you will get the treatment you need (if any). In the meantime you should stick to a low salt diet, cut down on potassium and do not smoke.

The other piece of advice I will give you is checking the internet is helpful but the people on these types of sites are way better, as you can talk to people who have actually gone through what you may be feeling. Whereas the net can give you misleading information.

Lastly if you ever feel unwell or anything go straight to the docs, don't worry about being a hypochondriac. I once made an appointment because I started to get spots appearing on my hands, some where big, some small, but they kept on increasing in numbers. The doctor took one look at my hands and said "they are freckles"!!!!!!! lol

Hi KirstyLeigh I am so sorry you are so worried about your kidneys, and I know saying don't worry is easy to say, but seriously stay away, as someone else has said from the internet, some of the information is sketchy on some of these links, stay on Lupus UK and reserve your questions and worries for your medical team.

Renal involvement and Lupus can come in many guises, in my own case it is IGA Nephropathy, which was diagnosed 10 years earlier, Lupus followed 12 years later, and we now know the connection in my case. I am also very prone to renal stones and cysts, and I have another renal scan on 8th June to see how my kidneys are looking, and if I have thrown more stones.

Take care.

Thank you LupusKaren, Im really sorry to here about your problems due to lupus, i hope your renal scan in June shows things have improved for you. I know i should stay away from the internet, i think I'm just going to stick to this website and Lupus UK from now on. I have information packs on the way, so they should be helpful. All the best. x

I am glad to read all of this as I was only told I have scarred kidneys three months ago. That is what lead me to lupus. Kirsty....I am in the same boat as you. I thought I could deal with cranberry supplements to prevent UTI infections which are believed by kidney dr to cause scarred kidneys. He wasn't even worried they were scarred and said the kidney will repair and build up in another area to compensate. I am finally going to a rheumy because I have the back pain often and try to drink teas to reduce inflammation, but I don't think it's enough. And I get that inability to urinate and urge off and on. That's what landed me in ER a year ago. Couldn't go. Like everyone else said, the internet can be a source of misinformation and worry. I decided to be careful of what I read and take with a grain of salt. Everyone is different. I am going to get some further testing, and listen to what the doctor suggests and still continue with my teas. I do believe they help. This site has a lot of people that have gone through the same experience and can help tremendously. Try to stay calm. I know I have days when I find a new ailment and start to panic. I go on here for support. Keep in touch

kirstyleigh profile image
kirstyleigh in reply to Natura

Thank you Natura for your reply, I've had the back pain on and off for the last 2 months, i did go to the doctors as i thought i could have a UTI, because of the frequent urinating, however i had no stinging pain (which is often associated with UTI's), The nurse tested my urine, and said there was no sign of infection, so off i went, but i wasn't convinced. I waited a while and went back to the doctors, requesting to see somebody different this time. I explained my symptoms, and he too, tested my urine. This time it showed possible signs of infection, The doc also felt my stomach and back area, feeling for the pain, applying pressure and seeing where it hurt. He agreed the pain was around the kidney area and requested the kidney ultrasound, which I'm still waiting for. Everything you have stated is similar to what I'm experiencing. I think if this pain continues, and hasn't declined by monday ill phone the doctor again, hopefully that will hurry my kidney ultrasound. Im so sorry for what you are going through, Its quite scary to think that even know we are in control of our body, we don't know whats going inside of us. I wish you all the best, and i hope all your further tests are results you want to hear. Love & light x

Kirsty....what is a ultrasound going to show, if you don't mind me asking. Curious...I am not worried really. My protein numbers are only a little higher than normal. I have faith and pray a lot. Trying to stay calm as to not make things worse, and to not worry my husband and children. Take care too!

kirstyleigh profile image
kirstyleigh in reply to Natura

Sorry about the late reply, I started work again on Sunday and haven't had much time. The kidney ultrasound is to view the size, shape and location of the kidneys. Sometimes they can assess blood flow to the kidneys too. I pray a lot also, and I'm trying my hardest to remain calm, i'll get there in the end. Hope your well. Take care. x

Natura profile image
Natura in reply to kirstyleigh

Keep in touch...I am curious to know what the doctors say and what you can do to deal with it. Feel better

Hi KirstyLeigh

I have lupus nephritis, and the only thing that happened to me was slightly swollen ankles! I didn't have any pain or urinate more frequently. I became really poorly as I left it so long to go doctors! So it's good you are getting it checked out now. Good luck, x

I agree. You don't always get pain.

I wasn't meaning to be harsh earlier. Just saying its natural to worry a bit but it often comes to nothing provided you do the regular checks.

We can always worry about the bad things but there's also the chance of us winning the lottery (if you take part). There's a chance that loads of things will happen. Don't spend too much time concentrating on the bad.

I have not been diagnosed yet, but earlier this year upon seeing a new gp, was asked if have high bp. Never did, except during my first pregnancy which also had alot of edema with it. I was told to monitor bp daily for a month, they found protein in my urine as well. 6 weeks later, rechecked and told no protein and will just monitor. Month later, i had severe edema for a week, went in and bp up again. Now on med for it, watchin bp daily and now told 'may have kidney issue'? I understand your worries, its frightening tp feel the unknown. But yet, what can we do? Im careful with my diet and sodium/salt intake. I drink plenty of water and clear fluids. I try getting exercise, when well enough to do so.

Hi I was diagnosed with Lupus in 2000 but by then it had done damage to my kidneys without any symptoms. I had 5 months of chemotherapy to knock back the Lupus which got me through to 2005 when it was time to give in to renal dialysis. 2006 brought an unrelated live transplant and 2014 sees my transplant going strong. Hope you have a really good renal consultant who looks after you well. My experience with the Sussex Kidney Unit at Brighton has been excellent. Very caring staff and consultants that will be all over you making sure you keep well and no stone is unturned. Good luck with things. Kidney failure is scary as it affects more of your body than you know, it's not the end, be strong. X

kirstyleigh profile image
kirstyleigh in reply to MandaM

Thank you for your reply MandaM, Im sorry to hear about your journey, with your kidneys. It is scary to think that although we may feel fine, we don't actually know whats going on inside our own bodies. Im not sure whether I have any kidney damage, I'm awaiting a renal scan to see how things look. But I am most certainly experiencing kidney pain. Sometimes the ache on my back where the kidneys are located, is so discomforting, the best thing for me to do is sleep. It's frustrating also, because it doesn't go away its like a constant ache. Its mainly my left kidney thats giving me grief. Hopefully this scan shows everything is ok. I hope your well. Take care. Love & Light xoxo

Let us know how you get on. I didn't experience pain in my kidneys unless I had an infection and that is very painful often accompanied with blood in your urine. Lets hope for a good result for you. Try not to let things worry you too much. Lupus just loves worry and stress so it can kick off a bit more! X

My sister has had major kidney issues, infections and the pain.

Three years ago I had a kidney biopsy as I was losing a lot of protein and there was blood found , (dipstick test). the result was that it presented as Lupus nephritis. I am not on any medication for Lupus as most of my markers are within rang, and that year I saw a lot of different consultants and tests. I suffer with low back pain , which GPs say is back ache - no, backache is different, I can stretch out of that. I also get dizzy spells when pushing my self too hard and tire easily. I continue to see the nephrologist yearly and have blood tests six monthly. Recently , with hot weather, I had an extremely itchy head. After blood tests it was found that my ESR was high. I was sent for an ultra sound on my head, but by then I knew I was improving, and nothing abnormal was found. Blood test then revealed it was back to normal. I can't advise, just sharing .

I have Lupus, haven’t been advised about anything from NHS Scotland. I recently had a positive test from Bowel screening. Had a phone consultation etc with Doctor at hospital. Arrangements made to have a CT scan of bowel, rather than colonoscopy because of Lupus. Now everything cancelled as not deemed to be urgent. If that isn’t I don’t know what is.

Lupus can affect your kidneys. You should have regular tests.

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