Lupus nephritis

[Jess_doyle]

I’ve been having issues for a while with pain in my lower back, and top of my back, sore in the morning around Bottom of my stomach when my bladder is full, need to pee or it will hurt all the time.

I got an ultrasound done and she said it was all normal, I have protein in my urine. I’m now getting blood sometimes in discharge, after drinking alcohol. But no one can tell me what is wrong, or doesn’t seem to be in a rush. I’m not sure if it’s Lupus nephritis. It’s not a cyst or any thing strange what the ultrasound didn’t show up not stones. Anyone experienced this before? I have mixed connective tissue.

[ecc_active]

Hi!

I have lupus nephritis and have done for 11 Years. Before diagnosis, my symptoms were ankle swelling and severe protein leakage in the urine, over 1000 times the normal limit. Didnt have any pain in the stomach or blood or pain in the back or anything like that. Kidney pain only came when the kidneys got more unstable. I’d try not to worry until you get the blood results, they will tell you a lot more. It could be a heck of a lot of things. Try not to over think because it will drive you crazy.

I hope you feel better and things get sorted soon!

[sarahsch]

Hi Jess,

I can relate somewhat. I don't know for sure what I have. Rhemy 3 followed Anti-DS DNA for 2 yrs to rule out sle, then Rhemy 3&4 told me the symptoms were MCTD. But neither can confirm diagnosis so we are "keeping an open mind". For me its the scleroderma symptoms that appear more prominent.

3 weeks ago my urine was rust coloured for 3 days. I thought it could be a uti as I have never had one before. Urine didn't culture anything. Was told by GP this was a red flag & I was referred under the 2 week rule.

This week had kidney ultrasound - OK, BP a little high (130/96), traces of protien & ketone in urine ( dips v. sensitive so nothing to worry about). Camera into bladder - bladder looked fine, but I have a "large capacity bladder" (sounds like an insult, but actually its a thing!). Urologist says I need to have blood tests (kidney function & eGFR) which will tell how well the kidneys are functioning, & CT scan. Their looking for a blockage between kidney & bladder I think.

I have lower back pain & confirmed myopathy here ( cause unknown). I was off hydroxy for 12 months due to hydroxy induced myopathy. No alternative medication given. During this time I have put on 4kg, although don't look much bigger. Was concerned this might be fluid, but it could be caused by being physically less active.

So have you taken urine sample with blood in to GP. Has GP done kidney function blood tests? It wouldn't be unreasonable to request this.

Whilst sle causes lupus nephritis, scleroderma causes a raynards like spasm in the blood vessels supplying blood to the kidneys.

I'm awaiting blood tests & CT. If clear I'll probably ask Rhemy to repeat kidney function tests in 6 months just to keep an eye on things.

Hope this helps.

Sarah x

[Chanpreet_Walia LUPUS UK]

Hi Jess_Doyle,

According to The Lupus Encyclopedia, if a person is experiencing difficulty urinating and develops back pain, the person must seek medical attention immediately. Have you gone for a blood test or kidney biopsy?

Our lupus and kidneys booklet discusses the various ways in which you can be tested for lupus nephritis, to learn about this click on the link lupusuk.org.uk/wp-content/u...

The NHS Choices website has a page discussing ways in which bleeding between periods can occur: nhs.uk/common-health-questi...

Here is the link to our ‘pain management’ blog article: lupusuk.org.uk/pain-managem...

Please let us know how you get on, wishing you all the best.