Lupus and renal involvement

[Ophelia1]

I was diagnosed with Lupus in 2020 and am being treated by rheumatology and gastroenterology for 'mild' lupus characterised by joint pain, oral ulcers, fatigue etc etc. However, I have recently begun to think that in fact I may be in the early stages of renal involvement. My urine is frequently frothy and having bought urine testing sticks I've noticed that recently I sometimes test positive for protein and blood. ( I am currently on antibiotics for a UTI which appeared last week, two weeks after an iron infusion). For several years now I've experienced frequent sensitivity in the right lower abdominal region, always in exactly the same area, halfway between the umbilicus and the hip bone. I'm wondering if this 'abdominal' pain is actually ureter pain, rather than intestinal pain, which it has been thought to be previously - though colonoscopy has revealed nothing. Having read about renal involvement I note that the signs / symptoms are high blood pressure, oedema, protein & blood in urine and fatigue. I don't have high blood pressure, or oedema, but I'm assuming that these signs would appear later, rather than in the early stages of renal involvement. I have an appointment coming up with my rheumatologist and am wondering how to raise this issue. I am concerned that she will say that there is no renal involvement without high blood pressure and oedema and that nothing can be done to treat until such time as hypertension and oedema have become a feature. Maybe this is the case anyway. I'd welcome any advice / information from others with renal involvement, who are more knowledgeable than I am regarding this matter.

[Spanielmadlady]

Hi I have class v lupus nephritis and was complete unaware of it until routine dip stick at first Rheumy appointment was off the scale for blood that you can't see.the only way to be certain you have kidney involvement is by biopsy.i had one in Oct 2018.i don't get oedema but I do have high blood pressure and frothy urine.it gives me no pain.as for next Rheumy appointment just ask them straight ask if they've checked your renal function recently if no ask for it to be done. If they ask why say why......im not shy about asking if I want to know I ask.my renal bloods are done monthly.some 60% of Lupies have kidney involvement without knowing and some damage is done before it becomes apparent. Rheumatology don't look after my kidneys I see a nephrologist and I'm on 6 monthly checks. Good luck x

Welcome to the uti club. . I'm in the same boat 😞 x

[Ophelia1 in reply to Spanielmadlady]

Thanks for this Spanielmadlady - I'll raise all of the above with the rheumatologist when I see her in a couple of weeks

[Ellie633 in reply to Spanielmadlady]

thank you for this. I’ve had SLE for 20 years and I now have “dangerously” high blood pressure, I’m thinking this may be linked to renal function, do you know what treatment there is for this .

Thanks

[Spanielmadlady in reply to Ellie633]

Hi.im on medication for my blood pressure... i take moxonidine and i also take mycophenolate. Whilst i dont follow a renal diet i dont drink carnonated drinks or alcohol and keep salt to a minimum.im sure other treatments are available but i can only comment on what i take.i did start out on azathioprine but it didnt suit so had to switch to mmf . Kind regards SML xx

[KayHimm]

Ophelua1 -

Yes, you absolutely should bring these issues up to your rheumatologist. I think it is standard to get urinalyses at every visit. They are trying to pick up on any kidney involvement as early as possible.

My GP picked up on an abnormal urinalysis years ago. I was watched so closely - worked in a hospital and had test repeated every ten days (yes!) after a 24 hour urine was normal.

There are many experts on lupus kidney disease here and will help you. My tests turned normal after a few months as I remember.

Best of luck.

xx K

[Ophelia1 in reply to KayHimm]

Thanks for this KayHimm

[WinterSwimmer]

Blood and protein can be a sign of a UTI - but can also be a sign of Kidney disease. Presumably you have bloods done before a Rheumatology appointment and are asked to take a urine sample? These should be able to pick up any problems. But I agree with others that you need to raise it - simply telling your doctor (GP or Rheumatologist) that you have frothy urine should set their alarm bells ringing and get the investigations you need. Don't leave this. Some types of lupus nephritis are slow-burn - others can devastate your kidney function quite fast, and although treatment can restore a lot of this function, you will then be in for a lifetime of more drugs and more medicalisation of your life. Good luck.

[Ophelia1 in reply to WinterSwimmer]

Thanks for this WinterSwimmer

[NewEngland3]

Ask for a protein creat ratio or a 24 hour protein urine test--they are much more sensitive than just a U/A for protein. Good luck!

[Ophelia1 in reply to NewEngland3]

Thanks for this NewEngland3.