Newly diagnosed lupus - kidneys?

[DaniMichelle]

Hi all,

Last month they cautiously diagnosed me with lupus and started me on 400mg of hydroxychloroquine. They’ve said it could be any connective tissue disorder but I mostly meet the criteria for SLE. For the past year and a half I’ve had pain prior to, during, and after voiding my bladder, significant abdominal swelling and significant water retention. During the day I void only 75-125mls every 5 hours, but at night I produce up to 650mls per void. I am a nurse and dip my urine in work when in pain to check for infection and there is never infection, just varying amounts of protein and sometimes blood with a high specific density.

From these symptoms I was fairly convinced that there was some aspect of renal involvement and my GP agreed and sent me for an ultrasound. The scan picked up nothing but a slightly thickened urachus. He said my kidneys look ok.

Has anyone found that they have had kidney damage despite it looking ok on scans? I am at the end of my tether with this pain and swelling and retention.

[Lupiknits]

Not that I know of yet: waiting next appt, but they are concerned about my kidneys, because of troubles with every dipstick and regularly having such low potassium in my blood I’ve even had the consultant ring me to go direct to go to hospital. Before that it was the GP

[Milkybarkid]

Never had that kind of problem, only joint pain and swelling in either one area or another. I stopped taking Hydroxi., a couple of years ago, was okay for around 8 months and then I started feeling, not ill but not very well, couldn't put my finger on it until I realised my hair was coming out. Started taking Hydroxi., again and with two weeks I was back to normal.

My last real attack was in 2004 and since then with a daily 200mg I have been fine, although recently started with asthma, which I believe is totally unconnected. On my regular yearly hospital visit they always check my kidneys.

A few years ago I got a persistent cough, probably connected with the start of asthma, my consult sent me for an ultrasound, xray and MRI scan but nothing was found of significance. Maybe you need an little more than and ultrasound to get to the bottom of the problem.

[Hidden]

There is a poor understanding of how Lupus, connective tissue disease, Vasculitis etc affect the kidneys. Blood and protein will show in the urine before U&E’s become deranged. An ultrasound will detect structural abnormalities but won’t show what’s happening at a cellular level, a biopsy is required for that.

Did you tell the hospital Consultant about the blood and protein in your urine, if you feel it’s connected to your diagnosis then it’s really up to them to investigate, not your GP. Do you have a specialist Rheumatology nurse you can phone or the Consultant’s Secretary?

Lupus and connective tissue clinic patients should have their urine dipsticked as a routine part of a clinic visit.

[DaniMichelle in reply to Hidden]

Hi,

On my last appointment day my consultant was ill so I saw her registrar. I did tell him and showed him a photo of the dipstick and my abdominal swelling and water retention. He didn’t dip my urine, just told me to go the GP for a urology referral. Personally I feel the symptoms require a nephrology referral. He didn’t examine my abdomen and was convinced that the swelling in my knees and ankles was to do with my hypermobility and that I’m on my feet as a nurse, but the swelling is definitely water retention and happens even when I haven’t been in work.

They have only done 1 dipstick since I have been diagnosed and they said it was fine. I’ve just spoken to my GP and my lab Proteinuria test has come back normal and so has my sodium and creatinine. This is where my concern is - when i dip my urine there is always a small amount of protein, but I’d say 40-60% of the time there is a large amount of protein and also blood. I’m concerned that they are basing their results off of one day’s test. At the end of the day if I have kidney damage starting, as my symptoms would suggest, I want to catch it early, not wait until it’s glaring at us!

[Hidden in reply to DaniMichelle]

Most Renal problems connected with Lupus etc are asymptomatic, it may be that there is a nerve component etc with yours if your problem is with voiding urine.

It’s a disappointing response from Rheumatology, I would contact them again or request a referral to Urology for urodynamic testing. Haematuria needs to be investigated, I think there are protocols in place for this.

[DaniMichelle in reply to Hidden]

My ultrasound is being faxed to my GP today so I’m going back to see him this afternoon. I don’t want to seem pushy, but I’m seriously concerned about my renal health. I just want to make sure there is absolutely no chance my kidneys are causing these symptoms before we move on to look down other avenues. I feel like I’m hitting my head off a brick wall.

Yes I think you’re right, there must be protocols in place for haematuria. Whether it’s my nephrology or urology or any other speciality, these symptoms aren’t normal! I just don’t want to be that person bursting into the GP surgery essentially demanding a referral.

[Hidden in reply to DaniMichelle]

Why not?

No one will care about your health more than you do. A good tactic is to ask your GP to note your concerns in your notes, their response to your concerns and then ask for it in writing. That often brings about a change of heart. You don’t need to be rude, just pleasant but assertive.

[DaniMichelle in reply to Hidden]

That’s true, I suppose. I just know something isn’t right and I want answers. The pain makes me scared to go to the toilet in work because I need to be on my feet for the babies afterwards and if I’m in pain it’s a struggle. I really need some answers. Thank you so much for your advice, you’ve been so kind. I feel like for once someone actually understands where I’m coming from 😂

[Hidden in reply to DaniMichelle]

None of this is easy. It took me 4 years to get diagnosed ( I don’t have Lupus ) after having over 9 second opinions across the U.K. I used to cry at every appt due to frustration. I had to learn to toughen up and advocate for myself. It was worth the struggle in the end, my GP was excellent and as I said to him if I could live with my symptoms I would do because who would put themselves through this struggle?

It’s difficult having something rare as we can’t assume that the person treating us will have good knowledge. I hope you get something sorted soon.