Sjögren's syndrome

[Nanny23]

What is Sjögren's Syndrome? Is it related to Hughes syndrome? Just found out my sister in law has it.

[Lure2]

Lupus and Sjögrens and APS are all autoimmun illnesses and often go hand in hand.

I have "Primary APS" (no other autoimmun illnesses found in bloodtest yet) but my Rheumatologist has said that I can have small pieces of Lupus and I have no antibodies for Sjögrens in bloodtest but I have dry Eyes and mouth. So even if the antibodies do not show up in bloodtests you can have symptoms of it. These are really strange illnesses and even the Doctors do have difficulties to diagnose us. There are also seronegative APS with no antibodies but only symptoms for APS.

When you get older you often get dry Eyes and if you use a lot of drugs you can get dry mouth also. There are drops for the Eyes.

Many members here have both Lupus and APS and Sjögrens. Thyroidea also are linked to these which makes it more complicated. I am operated for Hyperparathyreidosis in 2006. That is why Mary F often tells us to ask for a blood-test for Ferritin, D-vit, Calcium, B12 and the whole Thyroid panel. Many have Hypothyreidosis also.

Best wishes from Kerstin in Stockholm

[Nanny23 in reply to Lure2]

THANKYOU so much for explaining that Kerstin.

[Manofmendip]

Hi.

As Kerstin has said the three auto-immune diseases can go hand in and and, like her, I have dry eyes and mouth but my blood tests negative for Sjögren's Syndrome

Dave

[tim47]

Well that is three of us who suffer from dry eyes and dry mouth, and all have Hughes/APS, so that is an indication of how autoimune diseases can come in multiples. I too didn't test positive for some of the Sjogrens tests but am treated for it regardless (Hydroxychloroqiine) I also suffer with joint pain and fatigue. You can read more here, and elswehere arthritisresearchuk.org/art...

Best wishes

Tim

[Nanny23 in reply to tim47]

Wow autoimmune diseases are difficult to diagnose aren't they! Thanks for taking the time to answer my question. Hope you're doing well.

[Debbweb01 in reply to tim47]

Hi Tim I've been suffering with my eyes for years now! There was one lady on this forum that had exact symptoms like me! I've had the bottom pat if my left eye go gray &!Half blind in that eye! As I was coming from my sisters on major Parkway I went blind partially for several moments, I was able luckily to pull over! It was a circle of angular lines where I saw between the lines is best as I can describe it! Wen I pulled over I sat ther and then got out of my car to try to make it stop! Wen I got out I fell across my car with a vertigo experience (I've had episodes of vertigo thru the years) I was able to call my husband and tell him! I just sat there and closed my eyes for several moments and thank God it disappeared and I made it home ! I went to my primary at that time and he gave me a BRAIN MRI, which came up negative of course! I go thru these episodes of gray at bottom of my ey and partially blind many times! It goes away fast, but years ago when I told my eye doc they did an angeiogram of my eye and b4 angeiogram they had told me I had ocular migraines, the angeiogram showed I had an inexplicable spot on my left eye! They said since they had no idea of what it was, that it was just a spot!!! Lol... Yea just a spot okay!!! I've made several appointments with my great eye specialist several times, due to bad head on collision my Vitrious Humor was detached(it's near the retina) & they said it wud heal on its own! Well it hasn't and every time I've attempted to c him I've had to cancel it at least 5 times due to APS weakness and flair up! Shud I wait for January 27 wen I see That Dr. DORUK ERKAN or shud I go now??? I've come now to get use to the pain not the weakness cuz I can't even speak or write on this SIMPLY AMAZING FORUM!!! YOU SELFLESS PEOPLE HAVE LITERALLY SAVED MY LIFE WITH THE CONSTANT RE-ENFORCEMENT TO ME AND A MAGNITUDE OF PEOPLE WITH THIS CONDITION! I'm thoroughly AMAZED AT ALL OF YOU AND HOPE IT HELPS SPREAD THE WORD! I WISH I CUD HELP AND HEAL YOU ALL(Y'ALL), but I'm not a doctor and if anyone needs to come to NYC for treatment, MY DOOR IS ALWAYS OPENED TO ANYONE OF YOU!!! GODSPEED!!!

[tim47 in reply to Debbweb01]

All I can tell you is that I am of the view that I have only two eyes and if I felt either was genuinely threatened then I would seek immediate help. I have attended an eye hospital because of flashes and floaters and they have left me in no doubt that whilst these sysptoms should go, if I get a sensation like a curtain drawing across the eye then I must go immediately to ER.

At the very least talk to your consultants secretary asap I suggest - but like all here, I have no medical qualifications (even my first aid certificate has run out!)

[Nanny23 in reply to tim47]

Thanks that's good advice

[SjogiBear]

I actually have primary sjogrens syndrome with secondary APS/Hughes . . . there is some argument whether I have or have had SLE lupus alongside. A lot of these autoimmune conditions seem to be part of a spectrum and are not always as distinct as the doctors would like to make out. Sicca (dry eyes and mouth) can occur in many conditions, not just Sjogrens, but Sjogrens brings along a host of other systemic problems. There is a small charity in the UK specifically for Sjogrens Syndrome which your sister in law could join: bssa.uk.net/ There is a quarterly magazine, online forum and annual conference.

[Nanny23 in reply to SjogiBear]

Thankyou so much for that info. Seems they are connected. My sister in law has trouble with her hands. Hope she will make good use of this info.

[MaryF Administrator]

I often people with Hughes Syndrome/APS also have Sjogrens disease and also a Thyroid problem, however sometimes wrongly if they do not have the correct tests this can be wrongly labelled in some cases as Fibro. I enclose an article written by Professor Graham Hughes for Thyroid UK: healthunlocked.com/hughes-s...

MaryF

[jbrking]

My mum has had rheumatoid arthritis for 35 years and developed sjogrens about 6 years ago. She doesn't sweat, she has no saliva and no tears. She had to put a gel in her eyes at night to stop them drying out and drops during day. And a mouth gel at night. She has to sip water all day long and must have a drink with every mouthful of food otherwise she can't swallow it (or have very mushy/runny food - gravy/custard helps! Also drinking water will help keep teeth healthy because normal saliva would wash any bacteria in the mouth so be aware of any tooth decay. Because she doesn't sweat she does find the hot weather a pain as she can't cool her body down and that makes her feel quite ill.

[Nanny23]

Thanks for describing your moms symptoms. Sorry she has it. Hope she feels better.

[tim47]

Good point about the problems that can arise with teeth if you have a dry mouth/sicca. I have to see my dentist every three months. The lack of saliva in the mouth can have serious consequences. I take pilocarpine (salagen) four times a day. It is one of the few drugs that has an almost immediate detectable effect in the sense that I quickly poduce saliva after taking it. Pity it doesn't last six hours though.

[mollymom]

I have all the symptom of Sjogrens. I tested negative as about 40% do... told to have lip biopsy but too afraid of needles.

[Lure2 in reply to mollymom]

Are you sure that you have to do a Biopsy to test positive? When I tested (my antibodies were negative) salive and eyes I did not have to do a biopsy, but on the other hand I am not sure I have Sjogrens (not so very dry). No pain. Also I am getting old.

Kerstin in Stockholm

[mollymom in reply to Lure2]

No.... as 40% of people test negative after their bloodwork, the only way for me to get a correct result is to have a lip biopsy.. bc my Doctor is almost certain that I have Sjorgens because no saliva in my mouth and really dry eyes...

[Lure2 in reply to mollymom]

Have you a diagnose of APS? I mean if you have talked to a doctor who knows these illnesses very well. If you have not I suggest you do that. Liverproblems also go with APS. It is important to get the right treatment.

Kerstin

[mollymom in reply to Lure2]

Hi Kerstin...I believe my Rheumatologist checked everything...but I am going to ask...Happy New Year and a year filled with good health for all of us

[Lure2 in reply to mollymom]

Thank you Molly! I wish you the same.

Kerstin