Thursday, September 25, 2008

Sjogren's and Kidneys

Image found here
My friend Vicky, over at Sjogren's and Me, has been dealing with kidney failure caused specifically by Sjogren's Syndrome. Her blog is an eloquent description of her journey towards kidney transplant. 

When talking about renal issues related to Sjogren's Syndrome with my doctors, their attitude has been that renal problems directly related to SS are rare. In reading the available data and studies, I'm wondering if some renal problems fly under the radar, undetected because of this prevailing attitude of healthcare providers. Certainly this was true in Vicky's case. Her kidney function declined while under the observation of her physicians, who felt that it was just not possible to suffer kidney failure as a result of SS. As a result, she is now a candidate for kidney transplant. This is how she describes her experience:
I am MAD! I don't think finger pointing is the right answer but I feel like I was let down by my old rhuematologist and maybe even more so by my current nephrologist office. I wish I had listened to my gut instinct over a year ago...even longer. I felt like I was being pushed back and forth like a hot potato between my two doctors and no one wanted to take some sort of initiative to put me on the "BIG" autoimmune suppressant drugs. I am glad I finally switch rhuematologists a few months least I am being taken care of and she was smart enough to refer me to MUSC. NOT TO MENTION...I have recently taken a big part of my care into my own hands and educated myself on Sjogrens and what it can do to organs!
A study conducted by two Italian universities in 2001, and published in the Oxford Journal of Nephrology, Dialysis, and Transplantation assessed Sjogren's Syndrome and it's relationship to renal disease. It concluded that even though symptoms of renal involvement is "rarely overt" - or obvious - it is a frequent manifestation of primary Sjogren's Syndrome: 
In this report, we evaluated the prevalence of kidney involvement in 60 Italian patients with primary Sjögren'ssyndrome, and analysed whether this disorder is a cause of renal impairment. Our purpose was to examine relationships between the clinical and serological features of the syndrome and the presence of renal disease............In conclusion, the present study indicates that kidney involvement is a frequent extraglandular manifestation of primary Sjögren's syndrome. The renal involvement is rarely overt, and more often follows a subclinical course. In some cases, it may precede the onset of subjective sicca syndrome.
Another study, The occurrence of renal involvement in primary Sjogren's syndrome: a study of 78 patients, conducted by Tampere University Hospital and Medical School, in Tampere, Finland, came to similar conclusions:
In conclusion, latent dRTA and mild proteinuria were frequent findings in pSS patients in this study. Patients with renal acidification defects had longer disease duration and more frequent occurrence of hypertension and proteinuria than those with normal acidification capacity.
(dRTA = distal renal tubular acidosis, a dysfunction of the filtering capability of the kidney. pSS = primary Sjogren's Syndrome)
I admire Vicky's courage and trust in her own instincts. It's a good example for all of us to follow - trust your understanding of your own body. If medical advice given just doesn't seem right for you, get another opinion. Or two, or three. Your quality of life may depend on it. 

1 comment:

YrHelper Infonut said...

I too admire Vicky and her fortitude. She inspired me to hold a month-long TweetParty Contest in her honour. You are cordially invited.
The object of the party is four fold:
1) Help find a kidney for Vicky so her sons will have a mum as they grow up
2) Help raise money to fund Vicky's kidney transplant
3) Raise awareness of live kidney donation
4) Raise awareness of Sjogren's disease
Please come and join in the fun. Win my Amazon dollars that I win through Swagbucks. To increase the jackpot, invite all your friends to participate.There are lots of free ways you can enter to win!
If you use Twitter, Pls RT Signup Search #Vicky C Vicky's kidney fund grow! Win $$ #♥

In addition,all my profits from my affiliate shopping links are being donated to Vicky's fund for the length of the contest. Some links generate money even if you click on them -no purchase necessary. So come out & give a click for Vicky!

P.S. #Vicky is now defined in Check it out!