Posted , 4 users are following.
Just wondering for any of you who have extraglandular involvement of the kidneys associated with Sjögren's Syndrome, what were your initial symptoms?
Was your diagnosis of tubulointerstitial nephritis a coincidental finding or were you having particular symptoms?
Appreciate any feedback!
0 likes, 2 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
Zee5252 Megheart
Posted
Hello Megheart,
Both my kidneys have failed due to Sjogron's and I am currently on Transplant list and PD dialysis. My kidney was accidentally identified when I applied for a life insurance and they found that I have Proteinuria (protein in the urine) which is one indication of kidney failure. This diagnosis was later confirmed by my Kidney biopsy.
The only symptoms i had was extreme fatigue, aches in my feet and ankle and occasional swellings of my feet. I had Hashimoto's thyroiditis and was attributing all my symptoms to it. At that point my kidney function was only 47%. After they diagnosed my kidney disease I was diagnosed with SS, Kcs (keratoconjunctivitis Sicca), Dry Eye Syndrome & Hypertension.
So, please if you have any doubts, get your GFR (kidney function rate) and Creatinine checked. I would recommend that to everyone with SS to get these tests done periodically even if you don't have any symptoms. I wish I had!
Hope it helps.
Please feel to let me know if you have any other questions.
Thanks
Megheart Zee5252
Posted
Thank you Zee5252,
I'm so sorry to hear of your kidney failure. It sounds like it was a very insidious onset and goodness knows how much longer it would have been had it not been for you needing to be tested for insurance purposes. (Needless to say you were probably turned down?)
I can't believe that you could get to the point of 47% function with nothing being really obvious. It's pretty scary really and I agree with you that all SS people should be tested annually. I think my Rheumatologist has been testing Creatinine and GFR since I told her I had a very large urinary bleed almost two years ago. That bleed was scary as it was pretty much frank blood with clots (and definitely not period related, as no uterus!). My GP just dismissed it as a slient UTI and didn't follow it up with any other tests. I haven't been altogether happy with that explanation.
It seems now I have microscopic haematuria, so goodness knows if I have had this ever since the big bleed! At least my current GP has ordered a kidney scan.
Thanks again for your help Zee.