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SLE Lupus and Kidneys and methotrexate withdrawals?

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Posted 2/11/2010 11:38 PM (GMT 0)

So this is day 22 with unknown UTI. I did a 7 day course of antibiotics. Went back to GP, rechecked urine on day 7, and I'm spilling high count blood and protein but no infection (low WBC). GP says wait a week and then does another urine and I'm still spilling blood (visible) and protein (frothy). Have done this off and on for at least 10 years. I have at least 4 or more UTIs a year (some times infections and sometimes just blood). At last appointment the GP says could be the lupus (I still think he doesn't believe I have lupus). I was diagnosed with SLE a year ago (Jan 2009) and was previously diagnosed with fibro (2003). They have been blaming the UTIs on fibro and an irritable bladder.

Does anyone out there have Lupus Nephritis? In Jan of 2007 I had a total colectomy because my colon stopped working. I had developed toxic megacolon due to inflammation and very very slow peristalic motion. I have a lot of left back/flank pain (have been to the ER 5 times for it in the last 2 years because my blood pressure goes sky high 185/110). I have had this pain in the past and my rheumy gave me Percocet to take care of rib and left side (and to also keep me out of the ER). Any body have any ideas? GP is sending me to a urologist. But shouldn't I be seeing a nephrologist? Of course I have to wait 2 weeks to get in and I feel so rotten right now I wish some one would shot me and put me out of my misery.shocked Please help!!! Thanks

I'll also add that rhemy took me off methotrexate 4 weeks ago (I had been on it for a year) and in November and December I did a round of 8 Enbrel shots to rule out ser-negative RA (the Enbrel did not help). The rheumy said it would take 3 to 8 weeks to flush the MTX out of my system. He did not say what he was planning to put me on next. I've tried Plaquinil but could not tolerate it because of stomach problems. I don't tolerate drugs very well.

Posted 2/12/2010 12:22 AM (GMT 0)
Hi there! I have lupus nephritis. I was diagnosed Jan 09 after having a kidney biopsy to confirm it was from the lupus. I have never had any type of pain associated with my kidneys. I actually wouldnt know I had kidney problems excpet urine looks like foamy coke or tea, swelling in ankles, legs, and eyes and getting up a bunch during the night. My blood work is how we know how bad the disease is.

If you are having persistant UTI's than a urologist is the way to go. Do you know what your creatinine, BUN, and GFR is? If those are within or close to normal range, your problem MIGHT be more of a urinary tract issue, which is urologist. Nephrologist are generally the person to see if your doc has suspicion of decreasing kidey function or something along those lines.
Posted 2/12/2010 12:28 AM (GMT 0)
Hi! I also have Lupus nephritis. My case is similar to Amy. I have never had any pain associated with the kidney failure. I also had the biopsy to confirm the diagnosis. I know you must be incredibly frustrated. I also agree that you should be seeing a specialist. My guess would be a nephrologist because of the fact that you're spilling protein and that deals with a specific part of the kidney.

I certainly hope you find some relief and answers soon. God bless you, Judy
Posted 2/12/2010 1:01 AM (GMT 0)
Thanks Judy and Amy. I had read that there is no pain with kidney disease. I looked up kidney nephritis and do have the other symptoms.
Weight gain of 30+ pounds in the last year (I thought it was the methotrexate) because I did not change eating patterns. When I saw my doctor who removed my colon he was surprised by my weight gain
Leg, ankle, hand swelling especially visible at night (I just read about taking pictures to take to the doctor-great idea!)
The tops of my feet swell so bad that I'm usually gimping around after 20 minutes of walking with shoes
Off and on bloody urine (no infection) which has been going on for years (I was told some people just do that)

I know the pain doesn't fit but it is the same goofy feeling I had when my colon stopped working. Did you guys have a drippy, oozing, or trickling sensation down your sides at times? The sensation is like something filling up (painful) and after the oozing sensation (relief). And yep the doc has already ruled out kidney stones.
Posted 2/12/2010 1:57 PM (GMT 0)
Oh wow, No i have never had a drippy, oozing, or trickling sesnation down my sides. That does not sound pleasant at all. I was thinking about it last night. When you do see the urologist, I am sure, if he/she feels you will be better helped by a nephrologist, they will refer you. Well at least I hope they will.

Please let us know how it goes and what they say! Will be thinking about you!
Posted 2/14/2010 12:01 AM (GMT 0)
Hello there. i also have lupus nephritis. I was diagnosed last month. my rheumy has also taken me off of methotrexate because it is very bad for your kidneys. I have severe arthritis every where in my body so i feel your pain. Ask your doctor about celcept. im on it and it has been helping me. im also on a low dose of prograf which is also a kidney medicine. Im also on 30mg of prednisone. A kidney biopsy would be your best bet before you have anything drastic done.

Gett better soon
Posted 2/24/2010 12:00 AM (GMT 0)
Thanks all for your posts,

I have CT Urogram scheduled for a week from this Thursday and the day after that a Cystoscopy.

Have any of you had these tests? The urologist says we will start at the top and the first thing is to rule out bladder cancer. smhair

All I can say is wow...please send a lot of prayer my way. It seems this year is the worst so far. My husband said try to cut back on the doc visits but so far I've been in every week since the 1st of January. I'm having problems with my right foot falling asleep or burning like crazy and have fallen a few times, so I gimp around a lot (which is new for me), and also had to do my bi-annual trip to the dermo to get lesions burned off...I have a history of skin cancers...BCC and squamous. All of the cancers are in the malar rash area which I think is rather strange. My malar is more what I call a butterfly flush. Some days it is sunburn red and other days almost looks normal except for the zits or whatever they are. BTW I'm 55 and too old for acne!

Thanks all for your responses

Helen

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