Microscopic Haematuria and large irregular cyst - part of Sjogrens?

[MAT51]

I got the results of my lip biopsy from oral consultant yesterday although it will be a while before I have it in writing. She confirmed what I'd already gathered from another doctor - that all four of my salivary glands removed showed up for high numbers of focal (I think this is what she said!) lymphocytes strongly indicating Sjogrens Syndrome. She couldn't say whether it is primary or secondary as that is the rheumatologist's job - but has written to my GP and dentist to say that I have this disease and told me I'll be given an ultrasound of parotid glands once a year at least.

So with this confirmation I'm compliling a sheet of bullet point questions for the rheumatologist on Wednesday. My main question is about the microscopic haematuria and this large irregular cyst on my left kidney. I was told by a urologist earlier this year (normal cystoscopy) that these are both common - as is my hypertension. She didn't think there was any connection between these things. However when I was in hospital with Imuran induced pancreatitis last year I was under the care of a nephrologist who had studied my cyst and said it should be regularly monitored for changes, but was not concerned with it then. This was about 15 months ago.

Do others with Sjogrens have these renal cysts and should I ask the rheumatologist about this?

Also is Microscopic Haematuria a Sjogrens thing or is it just another common finding in the general population as the urologist said? I don't have Cystitis but I do have gynae atrophy and have recently started on HRT pessaries - maybe the atrophy is causing the traces of blood?

[Tharrell]

Hi MAT! Looks like they are defenitely nailing things down for you! About the renal cyst. I have both renal and hepatic cysts. I was told they are very common in the normal population and of no concern.

[Jasper]

I think it is a good idea to discuss this with your Rheumatologist.

People with Sjogren's can develop Interstitial Nephritis (Tubulointerstitial Nephritis), a kidney disorder in which the spaces between the kidney tubules become swollen (inflamed). One of the symptoms of this problem is hematuria. Of course, there are several other causes of hematuria also so the hematuria does not mean you definitely have Sjogren's related  Interstitial Nephritis, but hematuria is something your Rheumatologist should be made aware of so it can be followed up on appropriately.

http://www.nytimes.com/health/guides/disease/interstitial-nephritis/overview.html

http://cjasn.asnjournals.org/content/4/9/1423.full

http://www.ncbi.nlm.nih.gov/pubmed/8531362

http://www.mayoclinic.org/diseases-conditions/blood-in-urine/basics/causes/CON-20032338

BTW, I am glad you finally have a positive diagnosis via the salivary gland biopsy. I am niot happy you have Sjogren's, but I am happy you finally have a diagnosis.

[MAT51]

Hi MAT! Looks like they are defenitely nailing things down for you! About the renal cyst. I have both renal and hepatic cysts. I was told they are very common in the normal population and of no concern.

Yes thanks Tharrell - I'm feeling very cautiously optimistic! I was told this too re cysts being common but the scanner did say mine was particularly large and irregular so I just wondered. And the nephrologist did study it and say it needed regular monitoring. But I've moved to a new area now so my doctors don't have the images on their records.

I will mention it at the bottom of my list perhaps.

[MAT51]

I think it is a good idea to discuss this with your Rheumatologist.

People with Sjogren's can develop Interstitial Nephritis (Tubulointerstitial Nephritis), a kidney disorder in which the spaces between the kidney tubules become swollen (inflamed). One of the symptoms of this problem is hematuria. Of course, there are several other causes of hematuria also so the hematuria does not mean you definitely have Sjogren's related  Interstitial Nephritis, but hematuria is something your Rheumatologist should be made aware of so it can be followed up on appropriately.

http://www.nytimes.com/health/guides/disease/interstitial-nephritis/overview.html

http://cjasn.asnjournals.org/content/4/9/1423.full

http://www.ncbi.nlm.nih.gov/pubmed/8531362

http://www.mayoclinic.org/diseases-conditions/blood-in-urine/basics/causes/CON-20032338

BTW, I am glad you finally have a positive diagnosis via the salivary gland biopsy. I am niot happy you have Sjogren's, but I am happy you finally have a diagnosis.

Thanks very much Jasper. How would Interstitial Nephritis be diagnosed and would it explain the very large, irregular cyst on one kidney do you know?

[anita]

I have had microscopic hematuria for 20 years...and know many others with Sjogren's that also have it.  They never found a reason for it and doctors only say it's likely mild inflammation in the bladder or kidneys causing it.

I also have nephrogenic diabetes insipidus which causes inflammation on the surface of the kidneys not allowing anti-diuretic hormone (ADH) to properly be absorbed.

Basically, Sjogren's can cause inflammation ANYWHERE  (for both primary and secondary) and your questions are all good ones to bring up...as they may be directly resulting from your Sjogren's.

And the term for collection of lymphocyte is focus.  In grading a lip biopsy they look for at least 2 foci to be positive for Sjogren's.  (focus is = to an aggregate of 50 or more lymphocytes, histiocytes or plasma cells).

[MAT51]

I have had microscopic hematuria for 20 years...and know many others with Sjogren's that also have it.  They never found a reason for it and doctors only say it's likely mild inflammation in the bladder or kidneys causing it.

I also have nephrogenic diabetes insipidus which causes inflammation on the surface of the kidneys not allowing anti-diuretic hormone (ADH) to properly be absorbed.

Basically, Sjogren's can cause inflammation ANYWHERE  (for both primary and secondary) and your questions are all good ones to bring up...as they may be directly resulting from your Sjogren's.

And the term for collection of lymphocyte is focus.  In grading a lip biopsy they look for at least 2 foci to be positive for Sjogren's.  (focus is = to an aggregate of 50 or more lymphocytes, histiocytes or plasma cells).

Thanks Anita - more very helpful advice. So what I've been wondering is whether the cyst that the slightly perplexed the scanner a few years ago, because it was so large and irregular - might not have been a cyst but rather a lesion or scarring due to Scleroderma. It took her a very long time to establish that she could see the cortex. She did check it again at my request when I was being scanned as an inpatient last year,  and said it had remained the same size so not of immediate concern.

And I realise, as Tharrell says, that renal and other organ cysts are very common findings as we age,  and are generally benign. But my late dad, his father and his brother all had some form of late onset diabetes that wasn't thought to be either type 2 or 1, but was something else in between. Of course they are all dead and gone now so I can't confirm this, but I seem to recall my dad mentioning that it given him gout and cysts. He certainly had very severe gout.

So what you are saying also rings certain bells with me, although so far I'm not diabetic. I see the endocrinologist for the first time on Thursday, the day after my rheumy appointment - to discuss my hypothyroid treatment - which controversially (in the UK at any rate) includes T3 as well as the accepted T4. So I will ask more about this too.

Thanks for explaining more about the lip biopsy result. The oral doctor said that there was at least one more focus than was required to meet the criteria for Sjogren's, in each of the four salivary glands they took. She said she couldn't recollect seeing a more decisive result. I asked if this would explain the horrible taste or alternate saltiness I live with constantly and she confirmed it would. I also asked if the sensation of tightness and phantom swelling in my gums avd lips would be explained by Sjogren's and she felt this might relate to the SFN.

I'm still wondering a bit about Scleroderma of some sort because of patch of hard skin/ morphea on my arm and hard skin on my toes plus tightness in hands but will see what the rheumatologist has to say as guessing that this could all be part of Sjogren's. It is so easy to read too much into the few visual signs I have - particularly because I'm a visual artist so I tend to trust things more if I can actually see them for myself.

[anita]

Just to clarify:  The nephrogenic diabetes insidipus I have, has NOTHING to do with regular diabetes or sugar.  It is simply an inflammation on the kidneys prohibiting the ADH hormone from being absorbed...which regulates the concentration of urine.   Another gift of Sjogren's causing inflammation in the surface of the kidneys.

'The endo will look at everything for you...as well as your rheumy.  They will check for any indications (other than your ANA pattern and small areas on toes/fingers) of scleroderma.  It sounds like you have a good team so far and that everyone is trying to put all these pieces together for you. 

Please keep us posted.

[MAT51]

Oh thanks for explaining Anita. Yes I'm cautiously optimistic - but so used to changing goalposts now that I'm trying not to let my hopes/ expectations get too high. You know how it is. I'll post at the end of the week.

[eija]

I too have a large renal cyst and yes, they are very common indeed, with or without Sjs.

Since yours is irregular it absolutely should be investigated more thoroughly and also followed at least for a while.


Mine is regular, but with a thin septa. That alone caused several extra scans, both ultra and CT, even MRI. Also, they're following it - the last time was last autumn when they said it's okay but might be scanned one more time, so I'm waiting to see if I'm invited for one or not.


Glad you're finally finding some clarity in your situation! About the dry patch on your skin - I don't know if you already have, but it might be worth showing to a dermatologist, and maybe a skin biopsy.