Sjogrens and kidneys

Well, you obviously aren't in immediate danger of your kidneys packing up altogether, or they wouldn't have discharged you. But you're still right to be very concerned about this, and you're doing exactly the right thing in seeing a nephrologist.

It may just have been a very severe bout of gastro-enteritis. Some of the nastier bugs can cause some degree of kidney damage either temporary or permanent, but usually mild.

I know it's hard to keep your wits about you when you're scared, but try and stay calm and ask all the questions you want when you see the nephrologist. Maybe even take some notes if you think you'll forget once you get out of his/her office, or ask someone you trust to go with you.

I know that SS can affect any of the organs in extreme cases, though I have no personal experience of any kidney involvement. (My SS has recently decided to start going for my lungs instead!) I hope all goes well with the visit to the nephrologist.

 

dont be too freaked out, my sister who has diabetes 2 was diagnosed with chronic kidney failure , my elderly mother has  less than 25% function left ...both seem to be ok as far as kidneys r concerned....my sister leads a normal life...just has regular appointments with specialists.

​See a nepharologist to find out what exactly is wrong.

​My SS is limmited to sore joints and tingling feet ....though not consisent..comes I have been lucky.

Please let us know what the nephrologist sad to you. Also are you had any Lowe back pain, or kidney pain before?

Hi Sunkissed,

I'm not a doctor, but I also have organ involvement with my SS.  I have kidney involvement as well as the adrenals, which caused my blood pressure to go off the charts.  Don 't forget if one thing goes haywire, the SS will attack that area, so you got sick, throwing up, diarrea, causing your body distress, it could have just attacked your kidneys at that point, or it could be it's been attacking them for a while.  Mine has been for a while, and I didn't know it for a while.  It also has gotten to my liver, so they may give you a complete work over to make sure other parts are ok.  Good thing you are going to see the specialist!  It can also give your stomach issues too...as do I.  Also the intestines.  It's been really kicking my backside this year, and I have a very upset stomach daily, and our meds tend to not help in that department!  My doc put me on Protonix for my stomach, as the Prilosec did nothing, if anything, made it worse!.  Please keep us posted as to what your doctor has to say.  I sure wish you well!!!  People think it is just dry mouth and eyes...it can be so much more...they have no idea!!  When it goes to our organs it is a real bummer, to put it mildly!!  Bless you!!  XX

I'm going to start with a short apology (sorry) to how long this post is. I felt the need to share a lot of info because I know internal organ involvement is not as common as I once thought.

I have unfortunately had several internal organs and organ systems affected by Sjogren's. Along with renal (kidney) failure, Sjogren's has irreparably damaged my nervous system causing Gastroparesis, peripheral neuropathy, and hand tremors among other things. It has also caused Raynaud's and damaged my liver, but thanks to my age and lack of alcoholic beverages, my liver was able to repair itself (that took roughly five years though). SS has also caused some strange infections that always seem to elude doctors.

Back to your questions though. My personal experience with Sjogren's related kidney damage has been a bumpy ride. I went into renal failure when I was 19. It took three years for my kidneys to recover, but nevertheless, they were healthy again. While the kidneys don't typically "recover" after an attack from the immune system, it appears (as my rheumatologist has explained) that Sjogren's has less of a tendency to permanently damage the internal organs, excluding the glands and lymph nodes. This was when the lightbulb went off and he started thinking SS was more appropriate over Lupus, which the hospital doctors said I had. When I was 23, 25, 27, and 29...SS decided to take on my kidneys again. Each time, Hospital doctors misdiagnosed me with pyelonephritis (kidney infection) or nephrolithiasis (kidney stones). As it turns out, each time at all the different hospitals, the labs messed up the urine samples, so there was never proof of infection. The "stones" were also an issue as I never passed a stone and the CT scans showed no "tracking" in my ureters. So when I started having similar symptoms of another kidney issue 2 weeks after my 30th birthday, I went to my rheumy instead and he thought SS made perfect since. The Sjogren's is attacking the kidneys! He gave me a Solu-Medrol injection and the pain was gone within 2 hours. I know your experiences will not be the same, I just want you to know that you are not alone. Your journey is shared, unfortunately, with many others.

Oh, and just so you know, you may not have been walking around with kidney failure. As a Pharmacist, I should let you know that we don't use the eGFR as much as we used to. We focus more so on serum creatinine and protein in the urine to determine severity of kidney disease. However, there are some doctors that use more outdated evidence based sources. As a patient, I'll share my acute renal failure experience. Mine occurred in under a 24 hour period. I had a doctor appointment (yearly physical) where they checked labs on a Monday in 2005 and I started vomiting that night. My mom took me to the ER, where I was finally seen at 4 am Tuesday. My serum creatinine went from 0.5 to 2.6 in less than 24 hours. Most people notice when they are in acute renal failure, albeit they don't know it is their kidney(s) causing the problem. I had every symptom that you mentioned, so your sandwich was probably perfectly fine. However, should you have chronic kidney disease, most people do not know unless it has advanced (typically by stages 2 or 3, symptoms become more apparent) or they see their doctor, whom runs some lab work for another issue, and they "accidently" find some lab anomalies, leading to the diagnosis.

I hope your nephrology appointment went well. We would all love to hear some good news for a change.