The thing that concerns me most at present is involvement of the kidneys. When I saw the Rheumatologist recently, he tested my urine and it was okay. I described having acute kidney stiffening/swelling and pain every now and then and I asked him whether leaving the kidneys would damage them (i.e. I'm convinced my kidneys are affected and want to know if I should be doing anything about it). From what I have researched so far, the kidneys are often not treated.... Is this the case? Thanks.
Tryfan, kidney involvement in SjS is an uncommon but not unheard of complication. Testing urine for protein will sometimes indicate a problem, that could be caused by SjS among many other things, but blood tests including urea, creatanine, creatanine clearance and glomerulo-filtration rate would point out any problems at early stages, and at that time, it would be appropriate to ask for a referral to a nephrologist
Thanks for that. I see what you're saying and I am awaiting more blood test results (including urea etc..) so I will know more shortly. I wonder if anyone else has that kidney hardening sensation (I suppose it could just be muscle spasm in the area) which seems to disappear as suddenly as it comes.
Hi ive had pains in my kidney region, it felt like nerve pain other times aching, usually lasting a day or two, one gp thought i might develop shingles but didnt. Ive had bloods tested and apparently they're ok. Im not convinced, the pain was definatley there ???
My late mother had kidney problems due to high bp and was going on dialysis prior to her passing.
Dr recommended to her to drink plenty of water. Due to SJS attacking the moisture producing glands, I would hazard a guess that keeping yourself well hydrated would be important.
Good to get tested though. Glad dr isn't ignoring you.
My suggestion would be to see a nephrologist as soon as possible and I am speaking from personal experience. It might be nothing, but if it is something, you want to get it taken care of before you cause permanent damage to your kidneys.
I have recently been diagnosed w/SJS. After being sent to a specialist for an unrelated problem, I stated "I think I have Sjogrens and I think I've had it for 8 or more years". Three blood tests later and a lip biopsy confirmed SJS. My greatest concern is the pain I'm feeling in my upper left side, right below my rib cage; the pain radiates mainly to my back. I too just had my urine tested and it came back fine. But the pain I'm feeling is real (among other things) I don't want to take the chance of prolonged damage to my kidneys, but my RH dr said there is nothing he can do for me. I feel so discouraged.
Hello Susan, welcome to Sjogren's World.
Some of the symptoms of SjS aren't as clear cut as the books would have you believe...there's a lot more to it than dry eyes and mouth, and new information is constantly surfacing about neurological and organ involvement. I've had a "weird" pain/pressure feeling in my left side, migrating from just under the ribs to just over the hip, for the six year since my diagnosis, and it was actually that pain that took me to the doctor to start the diagnostic procedure. Every year, I have ultrasound and radiological tests to check everything from digestive system, pancreas, spleen, kidney and ovaries, and every year they are relatively normal (I also have sarcoidosis so I have granulomas appear and disappear in just about any organ or tissue). The best explanation we've come up with is that it's some form of neuropathy.
Urine testing can only show so much, but blood tests for renal (kidney) values might show early changes in function worth following up, and x-ray or ultrasound of the kidney could show any changes in structure, like cysts, growths, or strictures. A nephrologist would be better trained in this investigation than a Rheumy.
I have had bouts of that stiffness and pain you described for many years but not in the kidneys in the liver. Like Linda I have had the tests many times and they all come back OK.
There is something going on and you should pursue any symptoms to rule out anything nasty but if nothing comes of it perhaps mine and Linda's experiences might give you some comfort that whilst very unpleasant these pains are not always serious.
Heather
Well, today I have been looking into clinical studies, it would be wonderful finding relief. I know what I feel, and it hurts in that same general area just about 24 hours a day and I feel ill during the night while I'm lying down. Are there blood tests to check the liver or would I need to request a scan? Being told there really isn't anything anyone could do for you is so discouraging.
Hi Susan,
Yes there are blood tests to check liver function..
Hope you get some answers soon,
It is very discouraging when one can't get answers..
Do persist when you visit the Doctors, ask all questions that you want to know answers to..
Good luck and keep us informed . Dolly
Umm, my rheumy checks my kidney and liver functions with blood tests at every appointment. I thought they all did this?
Lurker, it seems you and I have a couple of the good ones. I was always surprised, too, when I found that routine 6-8 week blood tests for liver and kidney, yearly tests for immune status, and yearly x-ray and scans, weren't commonly done by every rheumy and/or GP.
Can't say I've any problems with my kidneys (to myknowledge) but last time I saw an ophthalmologist he was more worried about the effects of the plaquenil causing toxic liver. Funny but I thought ophths were all about your eyes, but he admitted he knew very ittle about SjS - can you believe .... yes I suppose we can, we've all been there at some time.
Wen x
Tryfan,
It is uncommon for kidneys to be involved. (at least that is what the textbook states) Blood tests that Linda mentioned are a must to determine if your kidneys are being damaged. I was told that once the kidneys are damaged, they won't repair themselves. However, you can slow down the process and perhaps keep what is left of your kidney function from decreasing. All of us should be getting yearly testing, and more so if there is a concern. My kidneys are tested every 4-6 weeks. I am an extreme case and currently on the transplant list due to complications of SJS.
I wouldn't worry, even if your numbers show lower kidney function. Educate yourself and talk to others.
Take Care!
Vicky
www.sjogrensandme.blogspot.com