Sjogren's or kidneys?: I have finally... - The Australian Sj...

The Australian Sjögren's Syndrome Association

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Sjogren's or kidneys?

meggiemog profile image
13 Replies

I have finally got a date for my salivary gland ultrasound - but whilst I was waiting I had to see my GP as I was getting really weird dents appearing in my skin (it looks like a finger mark left in bread dough). Upshot is he did a few blood tests and my kidney function has decreased by 18 percent in 9 months. Now I am wondering do I have Sjogren's or is it my kidneys that is making my mouth and body so dry? I am now waiting results of a urine test (checking for protein I think) - but I'm not so sure that will show anything. Just wondering if anyone here has had kidney problems too.

13 Replies
Catpuss66 profile image
Catpuss66

Yep I have both IgA nephropathy & interstitial nephritis on steroids at present

bookish profile image
bookish

Hi, it may be both - Sjogrens can affect kidney function, along with other organs, in fact can affect just about anywhere. Sjogrens Advocate site is very helpful, eg sjogrensadvocate.com/post/w....

Some links also between Sjogrens, Dysautonomia and mast cell dysfunction (and mast cell issues can cause tinnitus, GI problems etc, as can Sjogrens), as well as Small Fibre Neuropathy and Fibromyalgia. Best wishes

roxanne67 profile image
roxanne67 in reply to bookish

I checked out the link, somewhat confusing to me, as it sounds like they are describing a good number of what I had considered as Lupus symptoms, yet many of my earliest, serious issues, severe dry eye, thyroid going bad by 18, sublingual gland blockage, etc., were never identified as Sjogrens. I also had severe nephritis, liver failure, thrombocytopenia, sooo many things went crazy. My dry, caking, burning, bleeding, peeling lip, also never gives me a break. Only since I found this page recently, did I realize it is connected. I also have issues swallowing. My sinus can get so dry in some weather, that it can give me a very severe headache.

bookish profile image
bookish in reply to roxanne67

Yes, so many overlaps between these conditions it can be very hard to know what is causing what. I suppose that is why concentrating on the underlying autoimmune process and perhaps trying an anti-inflammatory 'autoimmune' diet can be helpful to some (like me). It is a big site, with a lot of helpful information, and Sarah Schafer is both doctor and patient. I first found her through the Smart Patients Sjogrens forum.

SusieW2 profile image
SusieW2 in reply to roxanne67

Yes, most autoimmune conditions are really just a cluster of symptoms. Each of us is more or less susceptible to experiencing individual symptoms depending on our bodies strengths and weaknesses. We get diagnosed on the prominent symptoms. There's a book called The Auto Immune Fix which talks about how much load of inflammation one can tolerate before symptoms surface. Also Symptoms as a "gift" in that it makes us try to address them and slow the damage.For dry eyes please increase the humidity in your environment. I try for about 50% using a humidifier to supplement the furnace. Also I run a diffuser overnight in the bedroom using some essential oils that address sinus function. A salt inhaler also help overnight.

For the lips, I use a homeopathic remedy called Natrum Phos. If I watch my diet avoiding inflammatory foods, the tablets does help somewhat. I believe that it isn't so much dry lips as an autoimmune response much like eczema.

Keep searching for things that address your symptoms and good luck for a better future.

bookish profile image
bookish in reply to SusieW2

Interesting thought about the lip symptoms which hadn't occurred to me, thanks. Great book too - Tom O'Bryan was one of the first people to give me the vital autoimmune clue when I saw Betrayal: The Autoimmune Disease Solution They're Not Telling You. Best wishes to you.

SusieW2 profile image
SusieW2 in reply to bookish

I will have to check out that book too Thx

mythreecats profile image
mythreecats

Hi.... Saw a post earlier when u said you developed burning tongue and dry mouth.... Im also in uk and u were describing me last few months.... Ive had positive antibody test t and am on referral to rheumatology.... A 3 year wait apparently! ... Im very distressed by the mouth symptoms.... Just wondering how u were getting on and how long u had to wait from gp referral to where you are now with ultrasound... Thanks

meggiemog profile image
meggiemog in reply to mythreecats

I actually don't have Sjogren's- my problems and dry mouth seem to be from my kidneys not functioning properly. I can only say the way I cope is eating what I can taste and drinking water regularly during the day. I even keep a bottle of water by my bed now as I have been waking up feeling like I have been drinking alcohol when I haven't. Waiting times now are beyond belief. If you can access private care - then do it.You at least have a diagnosis - and that is half the battle. I worry less when I know what's going on. Knowledge is powerful.

Let me know how things go

mythreecats profile image
mythreecats

Thanks. Was considering private consultation but would probably only be that as i couldn't afford extra tests after etc.... if lucky might be put on their nhs list after consultation but would have to wait my turn i guess. Im assuming it works that way. Sad we have to though. I guess its all getting worse and worse on nhs. 😞

meggiemog profile image
meggiemog in reply to mythreecats

I did use private consultation when I waited over 6 months for an 'urgent' neurologist appointment- but I am lucky as I have a work benefit of private healthcare. You pay a fee and it covers consultations and tests . Otherwise I have waited. It is a different world to the NHS - much quicker - and you get your results much faster too. You will actually see your consultant too - not someone else who is in the team.

I am not knocking the NHS though - I would not be able to afford private healthcare myself. Maybe after a couple of months you could check in with your GP and see if anything can be done whilst you wait or if there's a possibility you could get a cancellation appointment. Lots of people are pulling out of their appointments at the moment due to covid-19.

I wish you a speedy consultation and hope you feel tons better soon !

Missjosefina profile image
Missjosefina in reply to meggiemog

This describes my current situation to the letter. Fortunately, my work place health allowed me the chance to get a 'second opinion' - essentially a GP from a different part of the world spends an hour with you on the first appointment then asks you to get information about your medical history. They then review all that and provide a very detailed report - confirming that as well as a rheumatologist, a Consultant Dermatologist (specialising in Auto-immune conditions) could diagnose the same disorder that a Rheumatologist can.

Wishing you well!

Jo xxx

Dynamic63 profile image
Dynamic63

Hope you had good luck with your salivary lemon wash ultrasound - mine was vile abs I was choking . I also had 10 salivary glands removed to confirm Sjogrens which was positive. I have Sjogrens as my primary and RA as secondary. I’ve been trialling loads of biological drugs and Am now on Rituximab infusions twice a year which unfortunately doesn’t reverse Sjogrens but assists with RA . I’ve lost x9 of my beautiful teeth and struggle with the prosethetic teeth. I can’t afford implants and can’t have as my bone structure has shrunk which won’t accomodate the implants. I refuse to have a full top denture . The dryness in my mouth is vile and My mouth is like cardboard , and I can’t eat in public as I have to take the prosthetic teeth out to be able to chew properly which is completely embarrassing. My eyes produce no tears now and I have ripped my left eyeball by merely rubbing it. I have Maggie gastrointestinal problems and have 8-10 either huge bowel motions/diarrhoea per day. Only 5.5 ft tall and now 53 kgs . I’m 58 yrs old and my partner of 7.5 yrs left me last year because of not believing I was ill as he thought it was all too gross. 🤮 . Had a major bladder prolapse perhaps because of the Sjogrens ( had only 2 kids both ceasers) or ? re end of menopause. Couldn’t have sex fir 4 months so that too was a major issue with my ex partner. There is no cure fir Sjogrens and it completely sucks. It’s like falling from Grace with no future purpose.

Not much to look forward too!

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