Saturday, June 21, 2008

Sjogren's Syndrome and Kidneys


A reader left a comment and question yesterday about kidney disease and Sjogren's Syndrome. It was a very good question and deserved a more thorough answer than my brief reply. 

Her question was: 

I came to this blog because of Sjogren's. I have been diagnosed with it for almost 4 years now. It has affected my kidneys to the point that I have stage IV chronic Kidney Disease. I am scared that I will be put on dialysis in the next couple of years. I am being put on Procrit injections. Have you had to do this or know someone that Sjogrens has affected their kidneys badly?

The impact that Sjogren's has on the entire body should never be underestimated. Too often, medical caregivers are unaware of the existence of this autoimmune disease. Many have only a sketchy understanding of Sjogren's, and assume that the disease affects simply the eyes and the saliva glands. 

The reader's problems with her kidney function as a result of Sjogren's is unfortunately a good example of the possible systemic, meaning body-wide, complications of this disease. Other organs which may be affected include the lungs, liver, organs of the intestinal tract, the nervous system, the skin and connective tissues, and kidneys. 

Kidney involvement as a result of Sjogren's Syndrome is not uncommon, but the percentage of patients with serious and obvious symptoms is small. The most common problem in kidney function occurs when lymphocytes, a specific white blood cell, mistakenly identify kidney tissue as foreign to the body. They then move in to the kidney in large numbers, and attack the kidney. Most frequently, these "broken" lymphocytes move into the tissue around specialized kidney filters, and cause a condition called interstitial nephritis, resulting in the patient passing large amounts of un-concentrated urine. 

Another condition, renal tubular acidosis, occurs when these lymphocytes cause the kidneys to become unable to excrete a highly acid urine. This can result in an imbalance of normal salts and other essential blood chemicals.  

Less commonly seen are problems which lead to progressive kidney failure. 

You can read more about kidney involvement and Sjogren's here in a National Institutes of Health document,  here, in a National Kidney and Urological Disease report, and here, in an excerpt from The New Sjogren's Syndrome Handbook  by Stephen Carson, MD, and Elaine K. Harris. 

12 comments:

Connie said...

Oh man, I'm going to see a Nephrologist on Monday. When I read about RTA (Renal Tubular Acidosis) and saw Sjogren's listed at the top of the list for reasons for having this I was shocked. I hope to find out soon about this.

It's unreal how much Sjogren's affects our lives.

Julia said...

Hi Connie,

Hope all goes well with your visit. Keep me posted!

Anonymous said...

I was diagnosed 12 years ago. Sjogrens has effected my Thyroid and CNS. I am wheelchair bound. In February my ANA became pos. after all these years. I was on steroids and Azathioprine. I weaned off the steroids. After this I began having very serious muscle spasms. The worst would be from the shoulders down with my body fully extended very tight and unable to breathe. I realized my urine ph was 5.0, Mt venous CO2 is 26. Na, Ca,K are normal. My Phosphorous is high. I respond to alkaline aids like Baking soda. Any comments on the cause? Could this be RTA ? Is it O.K. to take Baking Soda at least for awhile? What about club soda? Should I go to a kidney specialist? Sorry for all of the questions. What do you think?

Anonymous said...

I lost a kidney and have just recently found a path to take because a Doctor took the time to listen and realize I am not a hypochondriac or a big overly sensitive, stressed, depressed woman. (yes, lots of justified sarcasm).

I was athletic, very lean and continued to stay fit by enjoying bike rides and playing recreational co-ed softball. However, when I started a family at 25, I had horrilbe toxemia, pre-eclampsia, protein in urine etc. Bounced back just fine.

Had another baby at 27, mild toxemia. BUT......THE NIGHTMARE BEGAN AND I MISS MISDIAGNOSED FOR 9 YEARS.

After my 2nd child, I was so sick for 2 years, BP up and down, shortness of breath with allergies and asthma medicines 24/7 but lungs were clear as a bell. Pain in my pelvis, left front bottom rib and back pain along the lower right and mid-flank area. Days and weeks where exhaustion & fatigue and horrible brain fog were so bad that I would remind myself thru the day "Don't forget to pick up the girls, don't forget to pick up the girls" and literally take a few minutes in the car to distinguish which leg went to which pedal. So much pain and nausea that I could barely sit upright and drive 4 miles without worrying I might passout. These symptoms cycled leading a GYN too be suspicious of Lupus since I also had the bright red flush across the nose, cheek to cheek. I had lost strength in my arms where I couldn't twist the plastic cap off a bottle of Coke. I was using gadgets that elderly arthritic patients use. And the pain in my forearms was excruciating..........as if someone had cut down to the bone, drilled a large hole and let acid pool up in it. That's the only way I can explain it.

My PCP sent me to a rhuematologist. Just another specialist among gastroenterologists, allergy DRs, ENT's, etc. So many and in my misery, I cannot recall some physician visits at all. But this lady did bloodwork and said I had fibromyalgia and sjogren's. Told me the basic line that Sjogren's would give me dry eyes and dry mouth. Nothing to worry about. She gave me Plaquenil for 6 months. I was miserable, took the medicine, and got my life back for a little while. Not realizing it was due to the medicine.

That was 2000.

2001 my health started failing again, 2002 was worse and in 2003 , a new Doctor that replaced my old PCP, almost made me jump off the table when she pressed on my right kidney. Then tests began. I credit this new DR (Dr Judith Moss, DO) to saving my life.

The previous PCP knew my left kidney was deep in my right pelvis, knew I had Sjogren's and was positive for an autoimmune problem but did nothing. All I was told was that my left kidney wasn't in the proper place and I was being oversensitive. I don't know how many medicines I was prescribed that did absolutely nothing. It was an annual event for my to throw them in the fire place at New Year's. The misery was the same without the medicine, so why pollute my body. I also began to avoid DRs because who wants to be told they are looney all the time.

Patty part 1

Anonymous said...

Patty...Part 2

2002-2003 I was in bed and sleeping in a recliner a good deal of the time. Dr Moss, DO had me on a path to find out the source of my problem. First we found out exactly where my kidney was in an xray, then that I had strictures, then that the kidney was decreasing 32% - 27% - 25% - 22%.

I was even sent to a TOP 10 kidney specialist in Dallas who let me walk out the door saying my symptoms had nothing to do with my kidney.She said when the kidney function was down to 10%, they would have to do something. So I guess that meant, suffer til then.

Blue Cross Blue Shield kept sending me to whoever to get rid of me. Finally out of pure luck, I found a surgeon. I was down to the last kidney specialist on my HMO when she walked in (like the rest did) and told me there was nothing she could do...........

HOWEVER...............SHE KNEW SOMEONE THAT COULD.

BCBS refused my requests for 9 months until I filed a complaint with the State Insurance Board. I had approval by 5 pm that very day. My PCP was also preparing a complaint to help push things thru.

Dr David Lee, MD listened. When I got home, I was so distraught that he was going to ignore me that I sent him a fax begging him not to dismiss me. I was worried he would not contest the TOP 10 specialist decision. I told him I would even donate the kidney if that was possible. He informed me of all the options and consequences. I had the kidney removed Jan 12, 2004, was walking .1 mph a week later lol, but on my bike riding 16 miles in a month. The total healing process took 20 months til the small amount of pressure finally disappeared.

JAN 2004 to JAN 2007 were perfect. I had a surprise pregancy and everything went perfect. But 6 months after the birth, (jan 2007) thought I was having panic attacks, then allergies, shortness of breath, fatique, etc ......allergy medicine's and post partum depression medicine's that didn't work.
2009. My insurance changed and I had to pick a new DR. He sent me to a cardiologist for the shortness of breath and gave me allergy medicine. Did not address the nagging kidney pain or fatigue. Told me I was older with a new baby, I should expect to be tired.

I was cleaning out my bathroom when I noticed a large index card with notes on it regarding diagnosis' over the years from doctors. I ony had these notes because I knew something was definitely wrong and the medicine wasn't working, so I was trying to make sense of it myself.

ANYWAY, it flipped over in the trash can and I noticed my notes on the back and realized the same pattern of events were reoccuring that happened after my second child. The new INSURANCE DR dismissed this as well as the blood results showing a problem. SO I WENT BACK TO DR MOSS, DO AND PAID OUT OF POCKET SINCE SHE KNEW MY HISTORY AND DID THE MOST FOR ME.

Anonymous said...

Patty....part 3


DR MOSS, DID put me on plaquenil. On the follow up 3 weeks later, she noticed an amazing improvement in my appearance, as did my friends. She said the plaquenil would have done nothing if I was just being a hypochondriac. She really couldn not understand why the INS DR would not refer me to a rheumatologist, so she offered a referral. I have to pay the visit out of pocket but the labs will be sent thru my insurance. I have an appointment this month.

AS FOR THE PLAQUENIL. In 2 weeks, I could take a good deep breath. 4 weeks the pain in my hips, knees and ankle went from a 10-2/3 scale and my kidney pain disappeared. 6 weeks the fatigue was starting to lift (AND I STILL HAD A BABY IN THE HOUSE, imagine that). 8 weeks, the brain fog is lifting.

Sorry its long, but I actually left out a lot. This is very a very short abstract in regards to what I actually went through. I'm sure I left things out, brain fog is still there. HOWEVER, Dr Moss, DO is relocating to be near family and she did a thorough review of my records and I agree with the conclusion......

Sjogren's may have been my problem from the start but was misdiagnosed. It may be what caused my kidney to died off. For now, I'm on Plaquenil. I don't like pills but who cares, this prescription definitely works. So while there very well be another or more autoimmune illnesses attached to Sjogren's......I'm feeling better and on the right path.

Hope this might help someone or maybe you can email me and help me with your story.

Anonymous said...

I was diagnosed 20 years ago with rheumatoid arthritis and shortly thereafter by sjogren's and hashimoto thyroiditis. My Sjogren's was kept in check with artificial saliva as needed and eye drops. I was put on many types of medication for the RA i.e anti-inflamatories, injectable gold (1 shot and developed an anaphylactic reaction)prednisone and methotrexate until i started showing adverse liver function tests. A couple of years later my Rheumatologist tried me on methotrexate injections and after one test (low dose) shot my kidney bloodwork went wacky. I am not able to tolerate many meds at all. My bloodtests reveal normal kidney function but anytime i try meds now i get a terrible gripping pain in both of my kidneys. Previous to the last methotrexate injection i had been on morphine after bilateral knee replacement without too much trouble. Since that time i took morphine once and it caused me to writhe in pain when it travelled through the kidneys. My family doctor believes my kidneys just don't tolerate any foreign items other then basic meds. Has anyone experienced drug interactions like this - with Sjogren's?

lizk71 said...

I hate to ask but do any of you know what the first signs of kidney involvment signs are? My basic urine test keeps coming back a +1 I don't know what that means and my doctor isn't very forthcoming with information. He just says it shows my kidneys aren't good as they used to be. He also ordered a 24 hr test and it showed the same +1 and says I need to have the test run every few months. why?

Julia said...

Hi Liz,

I'm guessing that when you refer to +1 in your urine tests, that you mean that a certain amount of protein - or albumin - is appearing in your urine.

If you do have albumin in your urine, it is an early signal that your kidneys are being affected by some condition. There are many reasons for the albumin - autoimmune diseases such as Sjogren's may be one of them - but other more common causes include infections and diabetes.

You may want to discuss this further with your doctor.

Ann Stewart said...

You said that you live in the PNW. I live in Lacey, east of Olympia. I assume that you've tried out nearly every rheumatologist in the Seattle area. Can you recommend a really good one? I'm looking for a diagnosis. I wake up with totally dry eyes; between getting up & having breakfast, my mouth will go totally dry, and I have difficulty swallowing food if it's not moist enough. Also my creatinine level has been moving slowly from .8 to 1.4 over the last 15 yrs. Went to see a nephrologist, who sent me for sonogram (I know they call it something else now, but I also have brain fog). He didn't call me so I asked for the report -- my kidneys were small and I have 3-4 cysts on the cortex. I also get extremely cold hands if I'm not careful to wear the right gloves (but I get hot toes). Anyway, if you could recommend a really good doc to diagnose me & treat if I do have Sjogren's, I'd really appreciate it. Ann, ruby2zdy@comcast.net

jane said...

Thank you so much for this informative post! I've had Sjogren's going on 20 years, and this year I have started to get kidney pain and noticible changes in blood and urine: blood and protein in the urine, very acidic urine, increasing creatinine. I am getting totally dismissive behaviour from my GP and specialists (who told me to drink more water). The specialist wouldn't even show me my CT results other than to say they're "OK", and wouldn't discuss the abnormal blood and urine results. He said as long as there's no tumour or aneuryism, I'm ok! I'm sure he thinks, as Patty said, that I'm just an obese, oversensitive woman that doesn't know about my own condition!

I'm still in pain and this page has convinced me to not let it go as they would have me and keep pursuing it. I wondered if it was due to Sjogren's involvement, but the doctors don't even seem to understand Sjogren's, so I obviously have to keep the fight going as best I can, with even less energy, to find the right doctor.

Thank you so much!

Blessings to you all,
Jane

Anonymous said...

Hi,
I'm recently diagnosed with Sjogren's and having significant female and adrenal problems. Can anyone recommend a doctor specializing in Sjogren's?? I'm having a real hard time finding anyone who knows about conditions that develop beyond dry eyes and mouth.
I'd be ever so appreciative ...
R.M.

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