hello everyone and thanks for reading. I have a question about Sjogren's. I have had dry eys for about 2 year now (I also had lasik in 2005). Within the last 4 months my have have gotten really dry. I have all 4 tear ducts plugged and I am on Restasis. I also use sclera lenses (more for vision but also helps the dry eye). My ete dr said he thinks I may have Sjogren's even though I have never has a Schirmers test (I am not sure how accurate that would be since i have had lasik anyway). tested positive for ANA 1:80 titer with hemogeous pattern but negative for RF and SSa and SSb. Should I pursue this further? Dry eyes are the only symptom I have. Thanks Andrea B
Hi Andrea and welcome to the forum. If dry eyes are your only symptom you're in good company as many people suffer from that regardless of Sjogren's.
You're already getting the correct treatment for your eyes so I don't think an actual diagnosis would help you any at this point unless you develop additional symptoms.
Thank you shira75032 yes luckily that is my only symptom. sometimes my mouth is a bit dry in the morning (I think I may someitmes sleep with it opne) and I do take a sleeping pill on some nights. But other that that nothing at all. I thought about getting a lip biopsy but I think I will hold off to see if anything developes. But man my eyes are dry LOL. About 6 months after starting restasis but eye would flood tears but not anymore (another reason the eye dr suspected Sjorgen's) and the fact I am 48 and in meopause. Could that be a connection ??
Hi Andrea, Sjogren's in women often starts after the menopause, but then so do dry eyes - with or without SS. But as Shira said, there's not really much point in getting an official diagnosis, as there's no actual treatment for Sjogren's anyway. They can only treat the symptoms.
That being said, my diagnosis was made on the basis of finding anti-salivary glands antibiodies in my blood. But only after I'd been getting a whole range of symptoms for ten years. Apart for the test for dry eyes, some people have a lip biopsy, but I've never fancied that one - it seems it's quite painful and there's a slight risk they'll damage a nerve.
From what I understand none of the autoimmune medications they could prescribe you helps much with the eyes anyway. Yes, from what I've read menopause can make dry eyes even worse as well as dryness in general.
You may want to read up on DHEA supplement therapy which has helped some women in your situation with Sjogren symptoms.
Thank you lily65668 yes you are right the only thing is to treat the symptoms. And I know how I am i would worry so much I would probably throw myself into my crazy symptoms. Oh also my Dr said my positine ana could be from my hashimoto thyroiditis so I guess that is what that could be. I already have heart disease (4 heart surgies). I just hope this does not progress. i do not think I can even take that Plaq medicine.
I would certainly would pursue it. There are loads who are Seronegative especially if your family history goes down the Psoriasis line. The titre isn't high but I wouldn't worry to much.
Thank you pam 87693 no I have not history of that is my family. I think i will wait to see if my symptoms progress and go from there. i see my eye dr this weekend so i will see what he says about my eyes. that have actually improved some. At least my eyelids are not sticking to my eyeballs anymore LOL
Hi Andrea, I should say that I don't normally have major problems with dry eyes. In my case this can normally be controlled with drops. However, all my symptoms seem to come and go periodically - which is normal for auto-immune conditions - and I did go through a bad time with dry eyes a few months back. At about the same time, I'd happened to be reading up on sea buckthorn oil, which is supposed to be good for dry eyes. I've been taking it for two-and-a-half months now, and can report that my eyes are quite a bit better. However, I've no way of knowing whether this is down to the oil or would have happened anyway in the normal run of things!
I know Shira has also been trying it out too, but started after me. (And they say you have to take it for at least three months to get any real benefit.) Any news, Shira?
It's only been a couple of weeks for me on the sea buckthorn. So far the results are inconclusive, though I do seem to have a bit more moisture than before in my eyes. I scored 0mm on the Shirmer's test, so any moisture is welcome!
Hiya Andrea and welcom to us, i have dry eyes i take soecial drops have done for years also moisture for my mouth, my left ears
fluid crystalised and for the last 11 years ived lived with
veirtigo/inbalance 24/7.....its such a hard disease to diagnose..
i presented to the doc with a really swollen red face and neck on one siide about 5 years before my ear dried up..he diagnosed me
immediately..but he was my dr had for years so he had much of my medical history...i was fiagnosed a few years after that with
fibromyalgia..its quite normal to have more than one
autoimmune condition, ...i really hope you get diagnosed and get the right medication you need quickly Andrea.,be bkessed..have a lovely day..😚
Hi Christine, what were your symptoms in your ear when you had the fluid issues and how were they resolved?
Hi Christine, the vertigo problem intrigues me too. I've had attacks of vertigo all my life. I have clear memories from early childhood of waking in terror in the night because the room was spinning and I thought someone was moving the bed. I had it on and off as I grew up, but it only really took off around the menopause, when I had several very bad years - falling and vomiting in the street, at work etc. I got sent to an ENT specialist for tests but he said it was just functional.
Fortunately, it largely cleared up in my late 40s though I've always had to be careful about sudden head movements. In the last year it's come back, but in a slightly different form. I no longer get the long-drawn-out episodes when I feel like I'm walking along in a rotating cylinder and everything is spinning wildly, but I now get momentary attacks which suddenly take my feet from under me with no warning at all. I never get them while walking these days, only when I move my head after standing still. I had one while standing on a down escalator six months ago (the shock of which I'm convinced brought on my current SS flare-up) and another one last week in the National Portrait Gallery in London. I'd been standing still looking at one exhibit, and as I turned to move away I went down like a felled tree-trunk. I was unhurt apart from a bruised elbow but it caused a bit of a panic in the gallery! I've also had a few falls when moving suddenly after standing still doing something in the kitchen at home.
My doctor has written me up for a cervical MRI as he thinks it's down to arthritis in my neck, which might well be true at my age (71). However, I've long suspected it's all part of the general sicca syndrome, causing excessive crystallisation in the semi-circular canals. That's why I was interested that you mentioned this too.
Hi Lily, I was soooo worried it was something else when it first
started..I had the all clear from the ENT, so my dr sent me to a
neurosurgeon, he done many tests..I was too chlostrophobic for an mri so he said it was fine, he would do these other tests I had in his rooms which he did...four of them, took hours...anyway he
said its all clear...total relief for me as one can imagine..I
had covinced my self that I was dying of a brain tumour...he just said that some of the fluid has just dried up -- crystallised and
that it would probably just correct itself in time..,11-12 years later im still waiting...mind you he/we never mentioned my Sorgrens
issue then, now we have moved and another local dr told me..
that the fluid drying up was from having of Sorgrens. ..unreal...if i so much as stand on a matchstick I feel like Im tripping over,
falling forward I cant bend down-too dizzy, but that fine..used
to it...I have no problems at all in the swimming pool..
its like I dont have it., unreal, mind you Ive never put my
head/ears under the water..I have learned to live with it well,
when you look around the world and you see soooo much
suffering...it makes me feel very grateful for my life..Its very
interesting I also have arthritis in my neck....mm..very interesting.I am exactly the same when I turn my head, even slowly, my
poor husband was all bruised years ago on his arm where i
would hang on for grim death whenever we went anywhere
and I was still using a walking stick but Ive since bought a coupleof different walkers..be blessed lily, have a lovely day..by the way im in Australia, where are you?😚xx
Oh my goodness i just typed you a really long reply and it just
disappeared..im really interested to chat too..im 65...im too sore to write it all again..i wil, contact you later, i might private
message you..😧
Not resolved...fluid crystalised..dizzy/imbalanced 24/7 for 12
years now nothing can be done..it will fix itself one day so the
neuro says...still waitingl😍lol...learned to live with it well though..had it long enough...some around the world are a lot worse
of than me..😉 xxx i see it as a good outcome, Im alive and Ive e adjusted xxx
Looks like you re euved my long message lily..phew....i just clisec my tablet befire and ut was there, just opened it niw a d viola there ut us....😉
O' soooo very sorry about those typos, meant i closed my tablet before because it looked like i lost all my typing..i just reopened it and it WAS there..voila 😰.xxx
My optician suggested that contact lense should not be used by people with any dry eye condition. I believe that the drops we choose should be determined by the viscosity of the tears - some have a higher oil to water ratio. I have now been referred to ophthalmology department so will update if I get any other information.
Well the lenses I have are actually an aide to dry eye. They are not the traditional contacts lenses. They are called sclera lenses and the fit on the white part of the eye and vault over the cornea. You fill them with PF saline and your eye is bathed in that solution. I still have to use drops through the day to keep the front of the lenses moist but they really help at work with the dry eyes.