I have been reading of many references to the above disease in relation to RA and am slightly concerned that this has not been brought into conversation by my professional carers. Is this disease common and should I be getting checked out for it...if so what tests and who do I speak to
Thanks
If your eyes or mouth, or both, are feeling particularly dry then you may want to ask about Sjogren's Syndrome but just because you have a diagnosis of RA doesn't mean that you will automatically get or be checked out for the secondary auotimmunities such as Sjogrens and Raynauds that can sometimes go with RA.
Sjogrens can sometimes be misdiagnosed as RA and vice versa so there is an overlap. However primary Sjogrens is a much more serious disease usually and your ANA blood test would probably show positive if you had it. In this form the eyes can be extremely dry and troublesome and other organs and joints can be badly affected over time. But like RA it comes in degrees and most people who have it secondary to RA don't have it very badly - it's not even something that they do biopsies for but it means you may be prescribed eye drops and mouth gel. Hope this helps. Tilda x
Hi Tilda just read what you have written about Sjogrens Syndrome. I have had very dry eyes for over 2 years and my mouth is always dry. Have told my gp, optician and RA nurse. Nothing ever gets sorted. I have a small lump in my eye which the optician said is calcium. Anyway after reading what you have said I will ask about it when I see my nurse on Thursday. I phoned today and was lucky to get an appointment. So I just wanted to thank you for the info.x
You are welcome. I'm no expert so glad you are going to speak to the doctor. Someone on the Sjogens helpline told me about her primary Sjogrens and how she takes 25mg MTX plus an anti tnf for it so I learned a lot while looking for possible causes of my own problems with poly neuropathy. I feel very strongly now that if we expect others in society at large to learn more about RA - as many of us do - then we should be equally prepared to learn about other autoimmune diseases in all their many forms. Good luck getting your dry eyes sorted out. I have Hypermelrose preservative free eye drops on prescription. I don't use them that often though but they are really good. X
Dry eyes are really common with autoimmune diseases, and mostly they don't bother testing for Sjogrens unless they think its the primary systemic form of sjogrens (which causes a whole lot more problems than just dry eyes and mouth). What usually happens is they just treat the symptoms - eye drops, and you can get stuff for dry mouth as well if that is a real problem. As Tilda has said, if you have had the ANA blood tests done (when you were being diagnosed) that would have given an indication if you have primary sjogrens. If it didn't show up anything, then its likely to be the secondary form, or what they call "sicca syndrome" (which just means "dry").
You do need to make sure your eyes don't keep getting too dry (by using natural tears type of eye drops), but other than that they don't seem to worry too much about diagnosing it properly, as there really isn't much else you can do. As Tilda has said, the hypromellose eye drops are good, but if you have to pay for your prescriptions, then its cheaper to just ask the chemist and buy them than pay a prescription charge.
I was diagnosed with primary sjogrens over 20yrs ago. My dentist referred me after finding calcium in my salivary gland. In those days they still did the blood tests but for dry mouth I had to go to the hospital one morning without food or drink and without brushing my teeth and then spit in a tube ( yuk!!! ) I have suffered numerous corneal ulcers, gynaecological probs, aches and pains, brain fog, anxiety, and now finally my poor old calcified gland has to be removed. There's no cure and only the symptoms are treated. If you're worried about it speak to your rheumy team but even so there's not much can be done xx Tricia
Hello I hav sjogens with my RA and my doctor prescribed viscotears by prescription and I put it in my eyes four times a day. It really helps!
Hello PoppyLady
I have longstanding RA and am "assumed" to have secondary Sjogrens based on my severely dry eyes and very dry mouth. As others have said, the secondary Sjogrens which can be associated with RA tends to be less severe that primary Sjogrens which is a serious autoimmune disease in its own right. If you find you are having symptoms such as dry, gritty, sore eyes and/or a dry mouth (which can sometimes be cause by the meds we take anyway) you could mention this at your next rheumatology appointment. There are some tests which can be done to determine the extent of the dryness but mainly, in my experience, because there is no specific treatment it comes down to asking for help from a relevant specialist (eg eye consultant) as and when symptoms arise. But I would suggest that it's not something to worry about unless you have symptoms which concern you.
Tillyx
After 15 years with RA I started to have sore throats, swollen glands, sore eyes and a croaky voice. My face looked like I had the Mumps. I mentioned it to my consultant, and was sent for tests.
My blood tests were OK for ANA. Then I had scans of my parotoid glands, biopsies taken from inside my lower lip, spit tests and the blotting paper in the eye lid tests.
I was diagnosed with Secondary Sjogren's. It is not a mild problem for me at all. I have extra dental treatments as my teeth are at risk from reduced saliva. I have punctual plugs in my tear ducts. And I put thick lacrilube ointment in my eyes every night, or my eyeballs stick to my eyelids and won't open.
Please don't imagine Sjogren's is always trivial. Do get advice if you show any signs.
Thank you for all your replies and the reassurance that despite it being spoken about a lot here very few people have it....and that is a relief. My dry eyes are probably tiredness and too much reading and maybe I just need to drink some more water to get rid of the dry mouth
Thank you again
Hi Poppylady...... Thank you for asking this question as I too have worried about it after seeing this condition mentioned a lot on this site and my Rheumy or no one else involved in my RA care have mentioned Sjorgens. I do suffer with dry eyes but I work with computers under fluorescent lighting in a hot stuffy office so have put it down to that. X
So glad I was not the only one........
Must agree with Phoebe . I have secondary Sjorgens, diagnosed when referred to opthalmology after waking up with a red eye. I had a damaged cornea , now use hyabak eyedrops every couple of hours, and lacrilube I eye ointment every night. It also affects the digestive tract.
I think everyone with RA should be aware, and get checked out if they have dry mouth and sore/gritty eyes, as there is a real risk of damage to the eyes, and other health problems.
Hello peeps
Just wanted to say that I am really sorry if my earlier reply came across as if I was trivialising Secondary Sjogrens. I really didn't intend it that way - Secondary Sjogrens affects me significantly as I know it does a number of others on the forum.
I genuinely wasn't trying to downplay it in any way, but rather to be reassuring in the sense of not worrying anyone who wasn't currently having symptoms. I agree completely though that anyone with RA should be aware of it and ask for help if they start experiencing problems which could be Sjogrens.
I'm so sorry if my reply upset anyone
Tillyx
You certainly did not upset me Tilly and I totally agree with you and was pleased to read your realistic answer .I only asked the question because I have noticed it being discussed frequently in conjunction with RA so starting wondering what it is.. I hope you are ok
I wasn't upset. It is good to know most people aren't badly affected. But it is clearly a serious issue for some of us and can be very damaging if untreated.
There is a Health Unlocked group for Sjogrens, called TASSA which may interest people.
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