Protein in Urine should I be concerned? - LUPUS UK


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Protein in Urine should I be concerned?

CJT37 profile image

I have high levels of protein in my Urine, I’ve felt like I have had a urine infection, but other than Protein and a sore back on my left side when I need to pee, there a no indications of an infection.

I have Lupus panniculitis/profundus and my GP doesn’t appear interested.

What can I do and should I be concerned?

29 Replies

Hi CJT, the sore back sounds a bit worrying if it's in the kidney area. Could you get in touch with your rheumatologist?

Do you have SLE with the panniculitis?

CJT37 profile image
CJT37 in reply to KayHimm

I have the symptoms and test on the cusp of the blood counts.

I contacted my GP who’s dismissed me so going to go back again 🙄

KayHimm profile image
KayHimm in reply to CJT37

You should discuss with your GP what the significance is. They have their radar up. They can explain reasoning. It all depends on how much protein and what else is in the urine.

I think if they weren’t concerned, you can feel reassured. Do you know the amount?

I had blood and protein in urine once, so I can relate.


CJT37 profile image
CJT37 in reply to KayHimm

I went to my determatologist who is now sending away a sample of my urine.

KayHimm profile image
KayHimm in reply to CJT37

Great. Always best to proactive. Keep in touch.

This needs to be addressed immediately. Call your rheumatologist and let them know. If you start swelling or get short of breath (more than usual) in the meantime, I suggest you go to your A&E.

Not to be alarmist but protein loss in urine in someone with lupus should absolutely be addressed with efficiency.

Please keep us up to date with any developments. Sending hugs your way. ❤️xx

KayHimm profile image
KayHimm in reply to Jmiller623

JMiller - does this apply if she has not been diagnosed with SLE?

With my UCTD the protein was sure handled as something to be immediately followed up.

Just wanted to make sure you noticed.

By the way, looks like I have cancer. Big shock.


Jmiller623 profile image
Jmiller623 in reply to KayHimm

Large protein in the urine in anyone with an autoimmune disease or even otherwise should cause some concern. I’d work it up immediately even for a healthy person if it was a large amount protein. But in someone who already has autoimmune issues, I think I might expedite the work up. She might be developing SLE.

I’m so sorry to hear about your recent finding. What kind of cancer? Sending hugs. ❤️xx

KayHimm profile image
KayHimm in reply to Jmiller623

Texting you now

KayHimm profile image
KayHimm in reply to Jmiller623

I see. Makes sense

MEGS53 profile image
MEGS53 in reply to KayHimm

Hi Kay. So sorry to hear about the cancer dx. Please feel free to PM me if I can help in any way. I had breast cancer a year or so ago (not that you've indicated this to be the dx) and I'm more than happy to help if I can.

Sending hugs, 🤗🤗🤗

KayHimm profile image
KayHimm in reply to MEGS53

Ahh .. thanks Meg. Will text you. 😍😍

Krazykat26 profile image
Krazykat26 in reply to KayHimm

Big 🤗🤗🤗🤗to u Kay 🤝 I'm so sorry to hear your shocking news. Sending 💜n thinking of ya at this difficult time 🌈😽😽xx

KayHimm profile image
KayHimm in reply to Krazykat26

Thank you dear KK. A bit of a shock. Will know more in the coming days. If there ever was a time I needed a kind-hearted surgeon, it was Monday morning. And no matter how this goes, I won’t ever forget that hug.


Roarah profile image
Roarah in reply to KayHimm

Oh Kay my thoughts are with you let me know if u need anything at all!

KayHimm profile image
KayHimm in reply to Roarah

Thanks Roarah. And I will.

panther50 profile image
panther50 in reply to KayHimm

So sorry to hear this Kay. Sending you lots of love and best wishes.

KayHimm profile image
KayHimm in reply to panther50

Thank you very much. Just waiting for the doctor to call with biopsy results. Long day ..


CJT37 profile image
CJT37 in reply to Jmiller623

My dermatologist took a sample of my Urine today fingers crossed, my bloods for kidney function seemed normal from my bloods taken on 19th

Jmiller623 profile image
Jmiller623 in reply to CJT37

That’s great news that your renal function doesn’t show any sign of decline. I sure hope there is no protein today. Very happy that your dermatologist is following up. Please let us know how you get along after today. ❤️xx

I agree with Jmiller. This needs proper investigation.

thank you for posting your concern, you have prompted me to get mine checked next time it happens. bless you, and good luck, polly

High levels of protein in the urine in someone with lupus could be nephritis, which can be very serious. Even if you don't have a formal diagnosis of lupus - please pursue this. Don't leave it.

This is interesting to me, I’ve just had yet another water infection, last one 6 months ago, I don’t go many months without getting one and this has been the same since a child, I’m now 60!I first went in the late pm and did the sample when I arrived at the surgery, it was dipped- no infection, I was so surprised as it felt like I had one. Two weeks later it still did, but this time first wee of the morning and as per usual protein and white blood cells. I nearly always have blood and protein with my infections. In early 2020 or was it 2019 I had bladder scan and all was fine, I had kidney stones on ultrasound but these had gone by time of this next scan. I constantly have pain where kidneys are, my next appt is with urology over the phone, I can only question them again as to why I keep getting protein and blood and so many infections?

I don’t have positive ANA for lupus but have just suspected I might have that or something similar due to a myriad of issues.

Good luck on your journey and trying to establish the cause of your protein



Protein in the urine ie frothy urine indicates some kind of kidney inflammatory condition eg. Lupus nephritis.

This is serious.🧐

You must get a nephrology referral to a renal unit. Your GP is acting negligently. A hospital consultant nephrologist must investigate further.

This can get pretty serious.

Trust the referral and further investigations get done soon.


My dermatologist took a Urine sample and has sent this to be examined. Hopefully get the results soon

panther50 profile image
panther50 in reply to CJT37

I’ve had multiple urine infections, that were like this so hopefully that’s all it is, but even that does need treatment especially with back pain as they are usually concerned it can develop into a kidney infection. Sounds like you’ll get answers soon.

Just wondering whether your urine test results have come back?

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