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Is this a Kidney issue?

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Posted 7/8/2008 12:00 AM (GMT 0)
I have asked this before and didnt get much of a response but I am going to ask again. I am having horrible problems with my pee!!!!!!!!!!!!! I have periods of time when it burns constantly. I feel like I have a burning sensation all the time. It hurts to pee sometimes but seems to get a bit better only to hurt again. I was checked for Interstitial cystitis and supposedly have it. I was treated with cyclosporine and low and behold? It put me in some kind of mild remission. My Lupus has been 70% better and the burning during urination actually got better too. They say IC has nothing to with Lupus. Someone can kiss my a@@ because the IC and LUpus improved on cyclosporine to the same dgree for the same amount of time. I have been off cyclosporine for 6 weeks and 2 days ago I feel like its all hovering over me. You know the feeling? Pain shooting through your joints sticking for a few hours and ebbing off just enough to let you know its lurking and ready to take over. The pain during urination is back !!!!!!!! I feel like kicking something. The burning has only tested twice as a UTI . The urine shows frank blood 2/3rds of the time and the cystoscopy reveals a healthy bladder go figure. NO idea where the blood is coming from. My creatinine has been fine! No one has any idea what the urine cultures mean. The urologist sent me to a transplant DR because he didnt understand it.

+ protein ( when blood protein is taken it is fine )

+ white blood cells

+ red blood cells ( 2/3rds of the time noticed with a naked eye )

every single urine test I have taken. open for any theories?

Post Edited (Chaya) : 7/7/2008 6:44:56 PM (GMT-6)

Posted 7/8/2008 12:07 AM (GMT 0)
Hi Chaya, The cyclosporin is used to slow the immune system response to "anything". It is often used for people with organ transplants to keep them from rejecting the organ. It will treat allergies too. So it would make sense that it helps the IC plus the Lupus. . . . both auto-immune. Lots of folks with Lupus have overlapping auto-immune diseases. So sorry you are dealing with all of this. I hope the transplant doc can figure out what is going on. I also hope some of the others here know more about the IC and your symptoms. (((((((( Chaya ))))))). Blessings!
Posted 7/8/2008 12:17 AM (GMT 0)
Thanks Rosie!!!!

Can I tell you that I dont believe it is IC? I have spoken to many people who have it and my symptoms are very diferent. I feel like I have to pee all the time and when I go it hurts but feels better afterwards. IC people have pain upon filling of the bladder but my pain is when I need to empty my bladder . I also have alot of blood which is not a hallmark of IC. Food doesnt seem to make my pain worse or better. Another hallmark of the IC world is to avoid food triggers. I am no longer seeing the transplant Dr but a prominent Lupus Dr from JHU. She is awesome! but not a urologist. The Nephrologist says after 6 months we may do a kidney biopsy as you can have raging Lupus disease of the kidneys and sometimes blood wont show it if its early enough. At some point the body will display the problem but how late in the game do you want to bet? I am curious to see if ANYONE here on this board has a problem similiar to mine and the Dr. figured out what it was?
Posted 7/8/2008 12:32 AM (GMT 0)
Well . . . I was wondering about the kidney(s) because of the blood and no sign of trouble in the bladder. But I know so little about such things that I thought some of the kidney folks would likely see your post over the next week and speak from more knowledge. With your symptoms, the biopsy would actually buy piece of mind or diagnosis. So, great either way. I mean, I wouldn't want to do a Kidney bx too casually . . . but you've got some real issues. The expert Lupus doc will likely know some great referrals too. So that will also be a huge benefit. I know this really scary . . . I hope the JHU doc figures things out. Is that Johns Hopkins??? GREAT!! Hang on . . . the kidney gals here are really helpful and they know lots about this stuff. Maybe edit your first post (click on the pencil in the upper right of the post) to change your title to include "Kidney Issue?" And they'll be more likely to read your post. I hope that helps. Blessings!
Posted 7/8/2008 12:37 AM (GMT 0)
When I had those symptoms it was the UTI from hell...but if they've already found that yours isn't a UTI, I have no ideas to add to what Rosie has already come up with. I hope you can keep pressing until some doctor gets truly, personally invested in figuring it out. It sounds horrid!
Posted 7/8/2008 12:43 AM (GMT 0)
Lynn I am a year into this. It all started with the Lupus flare from Last Aug.
Posted 7/8/2008 12:45 AM (GMT 0)
I am one of the kidney issue gals! With the protein and wbc's I and everything else leading to a dead end, I agree that a kidney biopsy is all that is left. Although, renal disease is usually painless. Have they tried giving you pyridium? Maybe you're having bladder spasms when it is full, which can be very painful. I certainly hope they get to the bottom of your situation soon. God Bless You, Judy
Posted 7/8/2008 2:13 AM (GMT 0)
I am taking the script version of Pyridium which allows you to take twice the amount as over the counter in one pill ( this amounts to cheaper ). I had asked about spasms and they told me that I could have ureter/bladder spasms but that wouldnt account for all the "junk" in my urine. ie. wbc rbc and protein.
Posted 7/8/2008 3:02 AM (GMT 0)
Your issues might be with your kidneys not your bladder.  See a nephrologist.

It is common to have kidney issues and blood and protein in your urine.  Can't explain the pain you are feeling.

Don't know where you live but if there is a teaching hospital or major medical school you might go there to get help.

Bill

Posted 7/8/2008 1:46 PM (GMT 0)
Have they cultured the urine specimen? It might be a raging UTI but they aren't using the right antibiotics to treat it.
Posted 7/8/2008 4:46 PM (GMT 0)
They cant be sure you dont have bacteria in your urine if they dont grow it out. It never shows anything with the exception of 2 mild UTI's in a year. I have had numerous cultures and urine checks. I have had a variety of Dr.s look at it themselves in a microscope or whatever the nephrologist uses to look.
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