I am undiagnosed. I have an appointment at the end of August for Rheumatology. I have come up positive for RA but have not had the tests yet for Lupus specifically (it's only that RA doesn't explain my neurological problems and I have rashes - so I want testing for Lupus as well).
My bladder is a problem in general and I did way too much last week, which could cause my symptoms today, but I wanted to make sure it wasn't a uti.
It came up positive for blood in my urine. I believe just "trace" but this is the second time. I went in for the same reason a few months ago and also had blood in my urine.
They want to see how the culture does because they don't feel it's a uti. The dip test comes up positive they said because of the blood.
I am asking the Lupus board because I thought kidney problems are usually involved with Lupus?
Is there something I should watch for that says I need to go back? My mom wants me to make an appointment with my regular pcp and see about a referral to urology.
My temperature was 99.8 today when I went in but they said since I have an auto-immune disease, they can't really take that as a sign of infection.
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cheshcat
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I've had this a couple of times, the first time being at my first rheumy appt. They were treated as if I had a UTI "just in case". I don't really agree with handing out antibiotics without a culture, and won't allow it again, but this was in my nervous early days. After seeing a rheumy for the first time I had a barrage pf physical tests, including lung, heart and kidney function. There is a cyst on one kidney but apparently that's very common, most people simply don't know about it, and it is no reason to worry. My kidneys are fine.
In your case, your urine is likely to be tested again at your rheumy appt ( mine is, everytime) and in the meantime if the sypmtoms develop more I'd see my PCP/GP
Thanks!!! You have made me feel better. The after hours and primary seem to say "you really need to see your rheumatologist" a lot when Im there, which I would like too as well! Only a month left and I'll finally be a regular patient and hopefully won't end up in this holding pattern again. Thanks again for your experience!
Sorry to read your having bladder problems and got to wait till end of Aug to see Rheumy!. Just wondering if you could ask to be considered for a cancellation to maybe bring it forward?. Has sometimes worked for me. They're the ones who will do the tests you need for lupus and kidneys!. Let us know how you get on. X
I've called a few times just to confirm I'm on the cancellation list. My RA is really flared and the RA board said to ask if I can be seen by the Rhuem nurse. I'm not sure they'd let me since I haven't seen the rheumatologist yet. But I may try Monday.
How’s it going ? . Did you find out anything ? . I have blood in the urine too for 3 years now and it’s the kind where you can’t see , I think it’s called hematuria? , the doctor sent me to see a kidney specialist because I had a camera in the bladder that came back normal but still looking for answers and now I’m just scared that it’s lupus :’(
I agree with misty. It's always worth asking to be considered for a cancellation if that means you don't have to wait so long.
I can only tell you that trace blood is quite common even in those without connective tissue diseases so I was told by a urologist. You should have a cystoscope to rule out anymore more sinister such as bladder cancer - but after that mine (microscopic haematuria +2) has been shrugged off apart from when occasionally I have protein in it as well. I don't suffer from UTIs but I have had kidney infections when I was younger and do have controlled hypertension and have suffered drug induced pancreatitis in the recent past and I do have digestive issues and intermittent pelvic pain.
That said I also have a confirmed rheumatic disease - (primary) Sjögren's. I was first diagnosed with and treated for RA but they think now that this was a misdiagnosis. But whatever it is I do have Sjögren's (+ANA, +lip biopsy) and I do also have longstanding microscopic haematuria. I also have a very large, irregular (but apparently benign) cyst on my kidney. I'm on a high dose of Mycophenolate / Cellcept (a kidney disease drug) having failed to tolerate the others. As far as I know it hasn't cleared up the microscopic haematuria though.
Sorry but my nursing brain never shuts down. Blood in urine is not normal. However it is common for women to have blood in their urine around the time of their menses. That's why a repeat UA will probably be done to look for protein and other indications of UTI or kidney issues before treatment. I hope it resolves for you. Take care. Nan
Ps - you mention neuro symptoms and I have this too so this link may be of interest - although you are probably already aware that Sjögren's is sometimes misdiagnosed as MS and vice versa.
No, I didn't know that. Thank you! No one has mentioned Sjogrens yet to me. I do have a MS neurologist that said she feels I do not have MS (I do have lesions but in the wrong area).
I have lesions too and paired oligloclonal bands in my spinal fluid but apparently (with benefit of hindsight) these point more to Sjögren's than MS. Not all neurologists or rheumatologists are switched on to this overlap so you may need to print off this John Hopkins page and show them.
Thank you so much! This is so helpful. I honestly had no idea. When my tests were positive for RA, it didn't explain my neurological problems. I do have rashes and I know Lupus and MS can mimic each other but I had no idea sjogrens did as well!
I guess I only have the month left until Rheumatologist. No. It was negative for protein. I had leukocytes but I'm not sure if that's significant to anything.
Hi. As was pointed out before, you need to be fully tested to check bladder and kidney issues.
I do have SLE and lupus nephritis, kidney inflammation makes them leak leukos, erythrocytes and haemoglobin (microscopic haematuria) into my urine ... ankles, feet and fingers swelling is not uncommon for me, specially with salty meals, pork, coffee, alcohol.
On bad days urine gets foamy or rusty/orange coloured... if any of this sounds familiar, tell your Drs how frequent or how bad the discomfort is. Best wishes!!
I had microscopic haematuria for quite some time too. It was an incidental finding but my Gp Requested all the other tests to check my kidneys. All came back fine so went for a rigid cystoscopy which was also fine. It cleared after 3 months on mycophenolate so my dr thinks it was lupus related. It hasn't reappeared. I would try get an appointment with your dr to discuss and get some further tests like a urine protein creatinine ratio at the very least
Sorry to hijack this post but Rolybear do you happen to know whether having +2 (so increase in MH) and a slightly elevated creatinine and total protein are all part of same picture? I don't have kidney disease (yet) but would expect the MMF and Losartan combo to be sorting this out as it has done for you? If I don't have kidney disease or UTIs then do you know what else it might signify? I keep meaning to ask GP but there are always other things!
I don't really know the answer to that twitchy. My dr was more interested in what was going on with all the urine results rather than my normal u&e's and lft's. I'm trying to remember what other urine tests they did, there was a 24 hr one And just a one off sample all looking for the kidneys pouring protein. I ranged from 2+ to 3+ of blood, no uti etc just like yourself. One test was called ACR if I remember correctly, albumin,creatinine ratio. Thankfully the mycophenolate seemed to clear it as a renal biopsy had been mentioned.
Thanks for the reply Roly. I suppose I'd only be on Myco anyway and perhaps this is what my doctors think and why they don't pursue the cause? I've had it for at least 21 years although not sure whether constant or not as i only knew when pregnant or because of recent clinical letters with lab results etc. I will ask my gp next time if I recall to. X
Bloods for kidneys include: creatinine, BUN (blood urea nitrogen), urea, uric acid, phosphorus, total protein, albumin, globulin, albumin/globulin ratio, LDH (lactic dehydrogenase). I get this panel done every 3 months by my nephrologist. They are suppossed to tell how healthy the kidneys are, but dehydration affects the results too.
Maybe your results are not very high and didn't raise a flag, but talk to your Dr next time to ease your mind. Maybe they are waiting for MMF to kick in and work its magic? Be well!
Thanks 1sam. Various rheumies have asked for Bence Jones tests but not the 24 hour kind. I think it's only when protein shows that they become concerned and my levels have all been only above range by a unit or two so I wouldn't really expect this to raise eyebrows - it's just me who is always looking for clarification - mainly because I still feel rubbish!! Sjögren's can affect the kidneys, liver, lungs and pancreas - in fact there's one regular user of the Patient.com Sjögren's group who has every organ damaged by it now. So I'm not really fretting but I thought I'd seize the moment as it's World Sjögren's Day. Yay!!! info.sjogrens.org/conquerin...
I'm really pleased to see that you've had plenty of helpful comments from other members of the community.
Kidney involvement occurs in around 1-3 people who have SLE. Blood in the urine is a sign of kidney damage, but lupus isn't the only possible cause of this. If their cultures for infection come back negative then they may wish to do further investigations. Kidney involvement in lupus usually presents with no noticeable symptoms in the early stages. If you notice frothing in your urine (potential protein leaking) or symptoms of high blood pressure (headaches, nosebleeds etc) then you may wish to report this to your doctor.
If you would like to learn more about lupus and the kidneys, you can read/download our booklet at lupusuk.org.uk/wp-content/u...
If you would like more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
My culture came back negative for the second time since Saturday but I'm spilling more blood in my urine and leukocytes (both the blood and leukocytes more then doubled in 2 days).
The doctor is starting me on Doxycycline and has sent over a referral to a urologist.
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