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Is it my kidneys or what?

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Posted 5/18/2009 1:05 AM (GMT 0)
Alright, I was diagnosed with lupus ages ago, and my rheumatologist has yet to put me on any medication to treat it. It seems to me that my lupus has been flaring more, and really going after my body lately. One day I woke up with pleurisy, after being fine the night before.

Well, I used to have some right flank pain off and on for sometime. Lately, the pains been getting worse, and now my left sides hurting bad too. I'm pretty positive it's not back problems because I know the difference between muscle pain and the pain I'm having.

Should I go in to get checked out, or wait it out? Do you guys think it's my kidneys?

The thing is, I've had problems with doctors finding the problem. I had gallbladder problems for years since I was like 8, and it took doctors 9 years to find out my gallbladder was only functioning at 21%. I had tons of tests to show inflammation, and my rheumy always said they came back normal, then not too long after that I have to get my gallbladder removed and the surgeon said my gallbladder was chronically inflamed.

So, what shouldi do.

Post Edited (LadyTsuguri) : 5/17/2009 7:09:01 PM (GMT-6)

Posted 5/18/2009 1:18 AM (GMT 0)
Oy. The first thing that comes to mind is: Find a new rheumy! I hate to assume anything, but it doesn't really sound like this doctor is worth much if he's diagnosed you and not at least given you plaquenil - it's the one "disease-limiting" medication for lupus. He also should be treating your symptoms. If you think you have kidney issues, or pain pointing to that as an issue, I would get checked out as soon as possible. Do you look at your blood test results yourself? You can track the inflammation markers and see if they correlate to how you feel...but in either case kidney function isn't something I'd wait around with. Cheers,
Posted 5/18/2009 3:25 AM (GMT 0)
Find a new and better doctor.

Kidney problems usually manifest themselves with edema.  A common condition for lupers is proteinuria where the protein is filtered out of your blood by your kidneys.  Protein will show up in urine tests and you can prescreen yourself....if your urine is "frothy" there is a good chance you have the condition.  Trace amounts of blood often show up in the urine but are usually not visible to the naked eye.

It can usually be treated with an ace inhibitor like lisinopril. 

If you are having internal pains see an internist.  There is lots that could be wrong and nobody on the forum can diagnose your pains.

Don't wait.  If they are acute then go to the ER.

Bill

Posted 5/18/2009 3:34 PM (GMT 0)

Bsime said...
Find a new and better doctor.

Kidney problems usually manifest themselves with edema.  A common condition for lupers is proteinuria where the protein is filtered out of your blood by your kidneys.  Protein will show up in urine tests and you can prescreen yourself....if your urine is "frothy" there is a good chance you have the condition.  Trace amounts of blood often show up in the urine but are usually not visible to the naked eye.

It can usually be treated with an ace inhibitor like lisinopril. 

If you are having internal pains see an internist.  There is lots that could be wrong and nobody on the forum can diagnose your pains.

Don't wait.  If they are acute then go to the ER.

Bill

Thanks you guys for your responses [:

I've had multiple urine tests where he kept telling me i have blood in my urine, and kept asking me if i was on my period, everytime I told him no I can't have one (I'm on birth control for my PCOS). Which is something else that worries me, I'll probably set up an appointment soon, but I hate assuming things.

Posted 5/19/2009 2:46 AM (GMT 0)
My dr said kidney issues usually have lower back pain too. I have had upper ab pain, turns out its my pancreas. Have had CT scans etc and does not show anything (and I pray it does not as my dad died of pancan)
Posted 5/20/2009 3:36 AM (GMT 0)
I have been having much of the same issues and pain. The pain is in my mid to lower back and then goes around to my sides. My abdomen is extremely tender to the touch, much less if the docs press on it. I went to the urgent care clinic yesterday because my GP was out of the office, they ran labwork, urinalysis and a CT scan. Everything came back normal! I am baffled, because I am on oxycontin and norco because I am in so much pain from my lupus on a daily basis and with this I am having major break through pain!

My urine is amber color, has been for almost a month now and I have a hard time urinating. My husband says I sound like a man with prostate problems....LOL! I have a very slow trickle (too much info I know). They thought for sure I had kidney stones or perhaps it was pancretitis, but everything looks fine. I just can't believe it!

I guess something major is going to have to happen for them to find it, which is the norm for me. When I've had pains this massive before they couldn't find anything either, they did exploratory surgery, every test in the book, neucular med tests, the whole gamit and nothing. Then I had a massive bleed and lost half the blood in my body! The ran more tests and couldn't find the source of the bleed, they removed my galbladder thinking maybe it was that and told me it would never happen again. A month later I had just returned from vacation from Las Vegas and again a massive bleed, another blood transfusion and they had to open me up and go through my intestines. Bingo, they found ulcers in my intestines, removed 9 inches!

I pray to God it's nothing like that again. The pain is different this time, but I know my body, something is definitely wrong. With the amber colored urine, I really scared that it's my kidneys.

Melissa
Posted 5/20/2009 3:46 AM (GMT 0)
Sorry you too are going through this odd thing. Mine is definitely my pancreas as my lipase etc is elevated. I get my mrcp on Thurs and am TERRIFIED they will find cancer since my dad died of pancan. My CT was clear as was my EUS but from all I know on pancan it is very often missed in scans and usually shows its ugly face after multiple ones. So I pray things turn out well this Thurs. I have no cluew hat could be causing this inflammation if its NOT PC. I wonder if it could be undx lupus as I also have nerve pains, extremem joint cracking, muscle twitching --I had all of this 8 months prior to this pancreas thing. However, my labs have been fine (as have all my neuro tests) I cant help but think its all connected though

With amber colored urine it could be your pancreas, liver or kidneys. Where exactly is your pain and what does it feel like (burning, sharp/shooting, dull and constant etc)
Posted 5/23/2009 5:25 PM (GMT 0)
Hm, thats' wierd. I have a lot of upper ab discomfort, I have for quite a number of years. I just had my gallbladder removed recently because of my pain there, my gallbladder turned out to be chronically inflamed, which they did not catch on any ultrasounds or scans. It took care of my pain after eating something, but I still get discomfort up there. It feels like it should be a stomach ache or something, only it's not where my stomach is.
Posted 5/26/2009 3:50 PM (GMT 0)
I've had lupus for 22 years, and I have the rheumatological symptoms AND kidney disease. The kidney problems are fairly easy to diagnose with a 24-hour urine test and a GFT (glomeruli filtration rate), which is just a blood test. I see a nephrologist for my kidney problems and so far we've stayed away from dialysis with monitoring and prednisone (I can't take plaquenil.) The kidney problems are the scariest because they can be life-threatening, whereas the other symptoms are mostly painful and no-fun-at-all!!! I hope you find a good rheumatologist who takes you seriously and does the appropriate tests. Early detection and treatment is so important
Posted 5/26/2009 10:31 PM (GMT 0)
I would like to chime in. I hate that you are dealing with these issues. Kidney 'issues' related to lupus, "Normally" are not associated with pain. Kidney stones, kidney infections and more acute issues usually do manifest with low back pain, usually, lupus nephritis does not. Of course, there's an exception to every rule. Alot of people who develop kidney failure are asymptomatic and that is why close monitoring of lupies' kidney function is needed.

I have had kidney innvolvement for 10 years and am now considered end stage (although I did recently get a vacation for dialysis) and have never had pain "directly" related to kidney failure.

I agree that it seems your rheumy is not on top of the game! You need a renal work up to be sure! Please keep us posted. Judy
Posted 5/27/2009 1:10 AM (GMT 0)
Thanks for your post. Lynnwood replied to mine, thanks to her, but no one else replied or chimed in. I really needed to know the info above because I have nutcracker as well. I have been on a diurectic, hctz for years but can't take lisoopril, it nearly killed me. I have 0 ACE anyway, I guessmy body doesnt make it anymore. My docs here are just letting me die. I seem to fall though the cracks in most social situations because I get sick and am gone for long periods. I am bedridden now and can't stay awake during the day. The flank pain is really bad. For nutcracker you can lose one whole kidneyand have normal urine, because the other kidney compensates. it is usually a sign of lupus, cancer, adrenal problems or a birth defect. I keep having sweats and am very naurseas. It hurts to go but I feel better when I do, but for me to go to the toilet is hard, I would rather lay there. My doc did a quicky urine, but those aren't accurate for infection, a culture is better. I've been told that by the time they can actually diagnose kidney disease through blood and urine, its usually really far on. Most docs dont believe women about the pain. I'm pretty much sure mine are just letting me die. They are doing nothing about cancer biopsies, any of it. It's sinful and criminal. I don't know how some people live with themselves.
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