urologist

[wsjkcj1]

Hello all. Does anyone here have kidney damage because of Sjogren's? I've had several kidney infections lately and I'm wondering if I'll end up having to see a urologist and if there is anything they can do to prevent or help control kidney damage.

[Megansheart]

Interesting question wsjkcj1. Although I can't answer your question it raises an issue in my head. In the last six months I have had two urinary bleeds....out of the blue. I went to A&E with the first one as it was virtually pure blood with several clots. They said it was a UTI, yet I had no indication of a UTI. Personally I am not convinced it was a UTI. Also I hadn't had a UTI for probably fifteen years. The second one was recently with blood in urine but lesser than the first. Puzzling!

Like you say, can repeat kidney infections (or UTI's) indicate Sjögren's involvement?

[wsjkcj1 in reply to Megansheart]

My Dr said Sjogren's doesn't typically harm the kidney's or lungs but I read an article that said it can in some cases. I know blood in your urine is a sign of kidney damage or infection so I think it's totally possible it's Sjogren's related.

[puffyface]

I am not a doctor, but just for your radar. When I was being checked out for thyroid issues, my Endo looked at my bloods and explained autoimmune disease and positive ana. I clearly remember him saying I think you have sjorgrens....I don't think it's lupus because your kidneys are not affected. As it turns out I have an overlap.

[wsjkcj1 in reply to puffyface]

you have lupus also?

[25clai in reply to puffyface]

Interested to find out about what your doc said about ANA and what on your blood tests suggested sjorgens? I had immunology tests done back in March, and my rheumatologist was not interested in positive ANA, ENA or RO antibodies. Diagnosed with fibro, been fighting for second opinion for 6 months.

[puffyface in reply to 25clai]

Dr said that positive ANA 1.1280 and positive anti Ro, coupled with symptoms (schirmer test totally dry) was sjorgrens. Have you got a diagnoses yet? X

[25clai in reply to puffyface]

I don't know what titre ANA is, but rheumatologist said, as there was no pattern it means I don't have sjorgens or lupus.i have second opinion tomorrow . 1 year of abnormal blood tests too. Can't believe some of my symptoms are just being written off due to my age (53). I spent 10 years being told it was all down to menopause....through that now, no change!!

[puffyface in reply to 25clai]

I think sjorgrens pattern is speckled..but may be wrong. Go for 2nd opinion armed with symptoms...they will probably do another blood test. Getting the right diagnosis is important for getting medicine that will help. Good luck!

[puffyface]

Yes, as it turns out, I do have Lupus too. But, I'm not a doctor....I just really remember that comment. Actually, it's all rubbish and bad luck, but doctors take it seriously and they have lots of medicines to make us feel better.

[puffyface]

I sent my reply by mistake too early. I wanted to say don't worry too much...sleep as much as you can...sjorgrens has lots of horrid symptoms, but there are lots of things to help. Stay in touch.x

[Megansheart]

I'm sorry to say but I think your doctor is uninformed or misinformed (although he did use the term 'typically' which gives him an out). There is quite a lot of evidence to show that both renal and pulmonary disease can occur as extraglandular involvement.

One article talks about those with anti Ro antibodies being more prone to Interstitial Lung Disease. Here is the link - hope it will attach for me!!!

ncbi.nlm.nih.gov/pmc/articl...

Another more general summary (below) includes kidney involvement. Obviously this doesn't happen in all patients (far from it) but it must occur enough to be associated with S.S.

emedicine.medscape.com/arti...

There are more papers discussing these issues. You can search for them. If you want to show anything to your doctor the more the paper is based on real research (such as the first one I posted) the more they will take notice. Anecdotal 'talk' is insufficient.

[wsjkcj1 in reply to Megansheart]

thank you so much for the links! I'll read these and find a new Dr. ha ha

[Ruth59]

You may want to look up the symptoms for Tarlov Cysts as they are well known for causing (among a lot of other symptoms) UTI's and Kidney infections. They are a cyst in the nerve sheath and cause lots of problems from the waist down, including bowel, bladder, Gynae, sacrum, lower back, legs and feet. They are often associated with Connective Tissue Disorders like Sjogrens. Diagnosis is by MRI of the Sacrum. Do your research, go to Tarlov Cyst Foundation website for info also on Utube (Dr Feingenbaum). Most doctors don't know much about this condition and it's often misdiagnosed as Fibromyalgia or CFS.