Vasculitis UK

Dry eyes and mouth

As many of you know I am part of the VUK Helpline team and we definitely have trends around the type of calls we receive.

I have noticed an increase in the amount of calls asking about eye symptoms, including pain, blurry vision, feeling of grit in the eyes and watering etc.

I just wondered how many people on here get these type of symptoms ( including dry mouth ) and whether you have ever been given an explanation?

There is an auto immune disease called Sjorgrens syndrome which is a common secondary disease and can be responsible for these types of symptoms. Symptomatic treatment ( eye drops, saliva replacement gels ) can make a big difference. Has anyone been given this diagnosis?

Please comment on any of the above!

Thanks

Lynn

79 Replies
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GCA?

BSR & BHPR Guidelines for the Management of Giant Cell Arteritis (GCA

These guidelines were prepared by a working group consisting of members of the rheumatology and general practice communities, together with patient representatives. They are now officially accepted as BSR guidelines.

pmr-gca-northeast.org.uk/us...

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Sorry, I obviously didn't make it clear that the people getting these symptoms already have a Vasculitis diagnosis and their features aren't typical of GCA.

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Hi, I have RA and was DX with secondary Sjogren's Syndrome a year after my RA DX. It's become worse since I developed Vasculitis (Rheumatoid \vasculitis). I use Hypromellose and Vita-pos for my eyes. Beconase for my nose Glandosane for my eyes.

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Thanks poemsgalore, sounds like you are getting good treatment and I hope your symptoms don't worsen further.

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I have sjorgrens. Dry mouth and eyes. I use viscotears gel to moisten and occasionally get eye ulcers at which time I get gritty feeling in affected eye.

I have GPA, sjorgrens, lupus sle, urticaria, raynauds, under active thyroid .... to name but a few.

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a familiar story, I think many of us are greedy when it comes to auto immune disease!!

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I have GPA. Almost always have dry mouth. Consultant tends to put this down to medication. I am on aziothaprine, trimethoprim, satins. Also suffer from dryness in one ey which have not asked consultant about.

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I would ask about the possibility of Sjorgrens syndrome and symptomatic treatment. Dry mouth can be very damaging to the teeth as saliva is protective.

I use a high fluoride toothpaste which I get on prescription and hylo forte eye drops which are preservative free and excellent.

This is a good information leaflet on Sjorgrens

arthritisresearchuk.org/art...

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Thanks for the advice. So it possible to have Sjorgrens as well as GPA?

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Yes!

Primary Sjorgrens is a rare auto immune disease in its own right but secondary Sjorgrens is relatively common when a patient already has a primary auto immune disease.

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many thanks, I will ask my consultant to look into this. what are the tests for Sjorgrens? (I have GPA, diagnosed 4 years ago - was ANCA positive but no longer after treatment)

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It can be associated with anti Ro and La antibodies but mainly it's looking at the symptoms and trying things like eye drops etc to help them.

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hi. i've got these symptoms for 18-20 months alongside with others. no diagnosis yet. consultants say might be Sjogrens but no specific antibodies in blood tests. don't know what to do next.i am in a lot of distress, can't sleep.i am currently using gels for my eyes, no major help. symptoms tend to grow worse over time. any advice will be appreciated.thanks

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Hi,

You can have Sjorgrens syndrome but be antibody negative. This is a good info leaflet

arthritisresearchuk.org/art...

I use hylo forte eye drops and find them excellent.

Do you have Vasculitis as well?

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i've been struggling with various symptoms for years, read a lot about them, came to the conclusion that they might strongly suggest vasculitis, talked to 10-15 consultants about this diagnosis but because blood tests,CTs, biopsies etc.have showed nothing so far, they didn't come to a definitive conclusion. this didn't help me at all, au contraire, made me very reluctant in seeking future help. i think i t's vasculitis but can't diagnose myself...

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Please phone or e mail the VUK helpline and either John or myself will try our best to help.

vasculitis.org.uk/helpline

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thank you Keyes, i'll try to email VUK. i don't see a solution to my problem to be honest...already consulted dr.Jayne at Addenbroke's in 2013 and was told anything could've been taken into discussion...the definitive diagnosis is the biopsies. already did 3 of those.

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Have you had a biopsy for Sjorgrens?

I know of patients who are sero negative but had positive lip biopsies. Primary Sjorgrens syndrome can be difficult to diagnose as it mimics other autoimmune diseases.

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i did have it last fall.came out unspecific. a lot of symptoms come and go, but dryness of the eyes and mouth is has been permanent since it has appeared.now i am experiencing something new, dizziness now and then. at times i can't stand upright, i am lightheaded and need to lie down, very unpleasant.

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Very similar to me, just when you think the bone dry painfully inflamed eyes for a few years are the worst thing ever, recurrent bubbled eardrums & dizziness started!

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have you got a diagnosis?

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Several Inc. Sjogrens & vasculitis

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please tell me the name of the doctor who diagnosed your condition.thank you! hope you are well!

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Mine was between several consultants from different expertise. What area are you from?

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west london.

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There's probably someone on here that can help more than me for relevant people in your area. I wonder, have you seen different fields, e.g. rheumatology, ENT etc?

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yes i have.to no avail.currently there is a suspicion of sjogren's but no treatment, no follow-up.i don't know what to believe, what to do,i'm feeling worse day by day.that's why i wanted to know a doctor's name. have you consulted dr.Price?

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No, I'm on the NHS in the south. Have you asked for a trial of medication? Have you ever had your thyroid antibodies checked? Also, I'd find out which ANA test you've had as there's a couple of different methods, I'm only ever positive on the IFA one, not the CTD screen, maybe worth looking at?

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yes,HCQ,no result.yes,they are negative.no,i don't know which test was used.

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What HCQ dose & how long for? Also, have you had thyroid tests? If you haven't done so already you might want to share the actual numbers (results & ranges) on the thyroid group on here? I'd find out which ANA test because there's evidence that if your result is a speckled pattern, CTD method doesn't always identify you.

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200mg daily for 2 months. Thyroid seems to be allright for now( hormones, antibodies) . I'll look for which ANA method was. Thank you.

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HCQ can take up to 12 weeks to work & that's a low dose so you may not have had an adequate trial.

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When I first went to rheumatologist in 2012 he did a thorough exam and part of that was putting litmus type paper under the lower eye lids, usually someone's eyes would tear up and stream but I didn't produce any. Hence the diagnosis of sjorgrens. I was told to use eye drops but gel works better and can be put into eyes as often as needed through the day.

At the time of diagnosis of lupus sle & sjorgrens I was not anca positive but they suspected GPA vasculitis I had a positive result a few months later.

I take plaquenil and methotrexate as well as other meds.

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Hi, just wondered what gel you use in the day? My eyes are so dry & sensitive I can only use Hylo Forte (& have to use Ciclosporin ointment at night).

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I use viscotears gel which I can keep using as often as needed through the day. There are alternative, cheaper, non branded versions too.

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Hi Keyes I have GPA and those symptoms are all too familiar. I have Glaucoma, probably steroid induced. I recently was recently seen at the eye clinic who diagnosed dry eye. Not sure if it's related to the glaucoma or autoimmune disease.

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Hi Ludo,

As far as I am aware glaucoma doesn't cause dry eye.

It was my optician that noticed that my year film was poor, she gave me hylo forte eye drops ( they are preservative free ) and I put them in 4 times a day. It's made a big difference to my symptoms, the only way to deal with this is to treat the symptoms unfortunately.

arthritisresearchuk.org/art...

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Hi Keyes. The optician gave me the same drops but I find them very difficult to dispense do you find that? I persevere when they are particularly bad. Thanks for the info

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I sometimes have problems pressing the top down but most of the time it's ok.

There are other drops that may be easier to use. It's definitely worthwhile persevering to prevent damage.

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I have GPA and experience dry eyes and dry mouth, both usually worst in the mornings. The blurry vision is always worst first thing when I’m waking up and my eyes are the most dry. I drink more than enough water through each day, so am not dehydrated enough to have a dry mouth - but I have never mentioned it to my consultant as it seemed like a minor thing compared to other symptoms/side effects of the vasculitis.

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I would definitely mention it.

Dry eyes and mouth can do a lot of damage, saliva and tears have important functions. Eye drops etc can be very effective. I had some scarring on my eyeball due to it.

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Hi, I have GPA and lots of other problems. I too have all these symptoms. My mouth gets so dry at night I have to sip water all night. I suffer with dry eye and that is getting worse with blurred vision. Sjogrens was suggested years ago while trying to get a diagnosis but not been mentioned since. I know my saliva glands are not working properly and they are painful.

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Definitely worth mentioning again and asking for eye drops, saliva replacement gels etc to help. I find hylo forte eye drops very good.

arthritisresearchuk.org/art...

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Hi Lynn,

I certainly experience these symptoms. The dry mouth I presume is down to the drugs I take. I do suffer with blurry vision mainly when I do anything physical and my eyes also water again I have presumed it was due to the Wegeners as I did not have these symptoms before.

Best wishes

Terry

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Hi Terry,

Watering eyes can actually be a symptom of dry eyes as it can mean the tears aren't normal.

I would definitely mention your symptoms to your Consultant as there are treatments that can help.

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Thank you Keyes, I will definitely mention it when next at the doctors. My dry mouth is the worst. Like others have mentioned I drink a lot of weather so it’s not dehydration, yet I feel I have to sip water all night which then means I need to go to the toilet all night!

Thank you for raising this awareness.

Best wishes

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I do think there is a lack of understanding at how debilitating these type of symptoms are. Consultants, natuarally , are concentrating on organ threatening disease in Vasculitis but dry eyes and mouth are very distressing to say nothing of runnng to the loo all night!

I use a high fluoride toothpaste which I get on prescription as lack of saliva can lead to severe dental decay.

There are saliva replacement gels but you may have to try a few before finding one that suits.

I think it might be a good subject to do an article about for the next newsletter!

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If anyone's still eating gluten I recommend stopping ASAP, my cheeks used to stick to my gums/teeth at night until I stopped that!

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Try chewing sugar free gum, it keeps your mouth moist and you don't have to keep guzzling.

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That’s interesting. I’m trying life without rituximab at the moment and all sorts of minor symptoms and problems that I’d forgotten about are returning. Isn’t it amazing how quickly you forget something(e.g white dry fingers) after they’ve gone away?

One of the most tiresome things has been the dry eyes and dry horrible taste in my mouth when I wake up...I’d been putting it down to my hypothyroidism and wondering if I needed to increase my levothyroxine, but perhaps it’s something else?

I’ve also just developed a floater in my right eye. A nasty little squashed spider that is determined to be in the way whatever I’m doing.

I think I’d better mention both at my next Clinic.

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I definitely would.

Eye drops have made a difference to my symptoms. 😀

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Hi, I'm in the US and have GPA.

Had cotton mouth and dry eyes for many, many months since I became ill around Sept 2016. Blood test for Sjogren's couple of months ago was negative.

Eyes were hurting enough that I went to an eye doctor. He said my pain and frequent tearing were due to dry eyes. Prescribed TheraTears (over the counter eye drops). They worked OK but I've found that 2400 mg of fish oil supplements a day works better for me and I no longer use the eye drops. I let the doctor know what I was doing and he's fine with it.

My primary care physician (not my Rheumatologist) prescribed Cevimeline HCL 30 mg tablets for saliva production and they have helped a great deal. I'm supposed to take 3 tablets a day but I feel like I need 4 because I'm up so often during the night with insomnia and by early morning I'm usually have dry mouth again. I developed extremely sensitive teeth a number of months ago and I wonder if the dry mouth had anything to do with it? I guess it could also be from the re-flux I have from the prednisone.

I recently asked an ENT if whatever caused my dry mouth and dry eyes could have affected my sinuses somehow (my nasal discharge became thick and opaque white when I got sick). He wasn't sure but seemed like he was considering the possibility...

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I too have the very sensitive teeth! Started about 4 months after onset of vasculitis symptoms, 3 months or so after the start of azathioprine. I can handle heat but not the cold/cool stuff- chilled salads, or fruit, even rinsing with cool tap water can hurt. Very Weird- I thought it was side effects of the drugs. I was also taking Protonix then b/c of the prednisone, but they took me off when the Prednisone dosage dropped below 15mg. I do the fluoride rinses and use Sensodyne as dentist recommended, but it hasn't gotten much better. Please let me know if you find something that helps!

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That's interesting as there is some limited evidence that omega 3 helps dry eyes.

Sjorgrens can certainly cause a very dry nose as well, some of the eye drops can be used in the nose as well to help ( obviously keep the bottles separate! ).

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My rheumatologist actually suggested I give the fish oil a try. I was told that 2000 mg should be enough and that it would take 2 weeks to notice any changes. It took me 3 weeks to notice the change and I needed a little more than the 2000 mg.

I was recently prescribed QNasal spray, which contains corticosteroid. We'll see if it helps (I also have seasonal allergies).

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Hi yes I have giant cell vasculitis, and have had all three of those symptoms for years, but no one will give me a straight answer, and keep ignoring these symptoms, making me feel rather stupid. My vasculitis according to the mri is limited to the left carotid artery, but the visual blurriness etc , I have had for years, so much so I have had to pay to have my own eye scans as my eyesight felt so wrong .The first I heard of mouth gels was from my dentist not gp, or consultant. I hate the confusion and lack of general knowledge regarding this chronic condition and feel it is very much trivialised. Thank you to this site at least making people feel that the illness they have is genuine and not imagined

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Dentists are usually very good at noticing the same guns as dry mouth can do so much damage to the teeth.

The annoying thing is that there are some very good products out there to help the symptoms which are debilitating rather than life threatening.

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Yes I can say that my eyes are more watery than they ever used to be, I was diagnosed with MPA two years ago and have noticed this annoyance since then. I have recently asked my optician for his opinion, he is aware of my condition, but I just think that he is unaware of what vasculitis is let alone the possible side effects and my GP has openly told me that I am the only case he knows of within his practice, and it is a very large practice! Anyway, the optician advised me to buy a wheat bag and to place this over my eyes until it cools and then to massage the area just below the eye. It did help but not much! Think I will take your advice and get me some eye drops or crème instead. I'v always believed that it had something to do with the wegeners and this post confirms it now. That's the main problem here in Wales, no medical experience available here at all really! I don't have the dry mouth though.

Interesting post this!

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If the optician has recommended a warm wheat bag it sounds like they think you have blepharitis.

I went to a new optician and they noticed that my tear film broke up very quickly. They stained my cornea and noticed that I had some abrasions which were caused by poor quality tears. My symptoms were intermittent blurry vision and my eyes used to feel not right. Hylo forte drops have definitely helped.

It might be worth askingnthe direct question, " could I have secondary Sjorgrens "

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I have no tear film at all! Back in the 1980s I developed a tiny hole in the cornea of my left eye. Two years and seven operations (failed) later, I completely lost my sight in that eye. Now I have cataracts in both eyes, but my left eye is too fragile to rescue.

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Hi Lynn,

I have EGPA (ANCA negative), diagnosed last Dec. I started having eye symptoms by end of Feb. I thought I had conjunctivitis; gritty pain; yellow goop discharge, mad-dog red eyes. Ultimately went thru three eye docs, now on a conjunctiva specialist - they tried 3 or 4 different types of eye drops for bacterial, viral, allergic conjunctivitis... lid scrubs, washes, rinses. The pain went away after 4 weeks. Annoyingly, the irritated mad red eyes, alternating between gritty and crusty to streaming tears has not improved very much.

They have ruled out blocked tear ducts... and doc suggested we just stick with the no-preservative drops and doing NOTHING else to see if that works. unfortunately , not really. It's a bit better than last March, but not much.

Still feel like I have trouble seeing well at close/reading distances and my monitors. Bleary-blurry vision nearly all the time, but I can see enough to drive.

Mouth dry also, and my teeth got very very sensitive to cool/cold temp foods/drinks. Dentist put me on fluoride rinse and Sensodyne toothpaste. That also has not improved much.

I thought all of those issues were drug side effects of one type or another, I have so many meds. No one has mentioned Sjogrens Syndrome... not sure if we'd try anything else. I'm already on prednisone and azathioprine; the prednisone is tapering down, currently at 9mg. Right now the symptoms are annoying, but not really bad. Maybe my coworkers have gotten used to the bleary-bloodshot-streaming-crazy-eye look; they've stopped edging away.

I'm probably more upset about my hair progressively falling out :-(

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Hi Grindhaus,

If it's secondary Sjorgrens then the treatment is aimed at treating the symptoms if the underling disease ( EGPA ) is well controlled.

Have they done a schirmer test ( they put a piece of litmus paper in the eye for 5 mins to test moisture levels ) and checked your tear break up time?

There are auto antibodies associated with Sjorgrens ( anti Ro and La ) and they can do a lip gland biopsy as well.

I would ask if they have considered Sjorgrens as a cause of your symptoms.

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Yes, yes, yes! Along with recurrent painful episcleritis!

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Found this video, Dr Elizabeth Price is the UK Sjorgrens expert

She was part of the recent team who have published an evidence based guideline into the treatment of Primary Sjorgrens. Although this is a slightly different disease from secondary the principles of treating dry mouth and eyes are the same.

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The recent BSR guidelines to treat primary Sjorgrens

academic.oup.com/rheumatolo...

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This link might also be of use to some as it explains the ways that seropositive.(ie RO positive) can differ from seronegative (ie lip biopsy positive).

With the greatest of respect to Dr Price - whom I’ve met and greatly admire, it is thought now ammongst the international rheumatology world, that this Ro positive distinction is more important than primary versus secondary. You can be Ro positive or lip biopsy positive but also have Lupus, RA, Scleroderma or Vasculitis.

The main difference is that the systemic prognosis changes according to your autoantibody status.

healthunlocked.com/api/redi...

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Hi Lynn. I posted this earlier on a Lupus UK HU post about dry eyes.

Also just to say (thread too long for me to read just now so sorry if this has been said already!) that medications such as Amitriptyline and Duloxetine are notorious for causing dry eyes and mouth. Also thyroid disease, chemo, ageing and other medications can all cause this problem - not to be confused with Sjögren’s which is usually a systemic autoimmune disease in its own right - whether secondary or primary.

Dr Liz Price and my star optician and new ophthamogist have all recommended my prescription repeats as the perfect mix for dry eyes:

1. Artelac Gel (nights - but not too viscose so I use during day too as it gives longer lasting relief),

2. Hyloforte for instant relief 4 x a day,

3.Lacrilube for occasional overnight use when eyes are flaring (I’ve used this all my life to very good effect ie no scarring on surface of my eyes/ corneal melt but it does cause blurring and contains lanolin).

4. Celluvisc single use drops for when out in evening wear with small handbag (never in my case lol!)

5. A Meibomian Gland kit which my optician sold to me complete with gel eye pad to heat in microwave for 15 seconds and a massager that looks like a silicone clitoris!! I have to use this daily.

I also wanted to say that I’ve been told by several opticians now that some complain of gritty dry eyes but only have mild Sicca, whereas others are unaware of how bad things are until scarring and corneal melt are discovered.

So being very symptomatic isn’t necessarily a sign of severe Sicca and vice versa. If you have a rheumatic disease then the surface of your eyes requires regularly checking however fine they feel. And if you have drops then remember to apply them regardless of how dry or moist your eyes are feeling.

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Thanks for this Twitchy.

I just wanted to highlight how this can be an issue in auto immune disease and flag up that there are treatments out there that are effective and people don't need to suffer.

My star optician found that I had corneal abrasions despite a negative schirmer test.

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Oh that’s pants about abrasions.

This is why I thought it important to emphasise that dry eyes need monitoring even if you think they are only mildly affected or you don’t have Sjögren’s. Sicca affects many - especially those with rheumatic diseases - but full blown systemic Sjögren’s is rare.

I don’t have a dry mouth although it feels horrible all the time. I produce plenty of saliva and yet my dentist has just discovered cavities from very old abscesses from root canals that sit right on my trigeminal nerve. He thinks this is what may have caused at least some of my facial numbness, twitching and burning lips and gums. He can’t risk re-doing the root canals himself and thinks my entire lower jaw is probably going to need a clean out of some kind very soon. I await my oral consultant’s decision on this with some dread! I’m absolutely sure this is related to longstanding Sjögren’s - but of course many have oral cavities so no one but me would probably make this connection.

My neuropathy is so widespread that it affects all of my peripheries, meaning I can’t stand up for longer then 30 seconds without agony in my tendons and nerves - and yet I too had a normal Schirmers and saliva flow test.

My lip biopsy being 100% positive astounded all my health professionals apart from me!

My eyes are really not severely affected compared to many who don’t actually have full blown Sjögren’s. The worst part for me is the numbness around my face and eyes and the horrid taste and autonomic GI issues from top to tail. The Sicca is really just a severe nuisance for me but I know for many with longstanding RA it’s much worse.

Also I believe that, although I have plenty of saliva my tears are of poor quality, my saliva is of poor quality and this has affected me for decades.

So I’m lucky not to have severe Sicca but this does not mean my Sjögren’s is mild. And using drops and gel frequently plus punctal plugs and heat pads has ensured that I have no surface damage to my eyes so far. Very important stuff these eye drops are!

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I was diagnosed with MPA in 2013. This past summer, upon hearing my complaints of terribly dry eyes and mouth, my rheumi indicated he thought it was most likely sjorgrens. He made no "official" diagnosis.

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Were you given treatments to try?

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I was not. Doctor thought symptoms might lessen when I received my maintenance Rituxan infusions. There was no change and the dryness persists.

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I would ask about moisturising eye drops, it's a simple measure but can really help.

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Hi

I noticed that changes with my eyes just after I started treatment for vasculitis. I found my eyes were either very dry and got itchy but on other occasions they watered and I had to keep wiping the tears away. My GP told me it was secondary Sjogren's Syndrome and explained what it was. He also gave me a sheet describing the condition which I still have. He added eye drops to my regular prescriptions.

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Sounds like you had great treatment Jann.

I feel an article for the next newsletter coming!

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I think that would be great.

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Hi,

I have dry eyes which drives me insane. And my eyesight has worsened over the last year or so. I've never been checked for Sjorgrens.

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I would ask about the possibility as eye drops can make a big difference to symptoms.

If you have a good optician they should be able to check your tear break up time etc.

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Hello,

I see many people mention having this. I have the dry eye and mouth, Graves' disease with hyperthyroidism as well as Vasculitis. All of which appear to be due to auto-immunity which started during chemo treatments. Initially, my eyes were watering and looked like I was crying all the time. I was shocked when dr said dry eye, at that time I had the wettest - dry eyes. Now, my eyes have developed Graves' Ophthalmology.

I am not sure what came first the Sjorgens, Graves, or Vasculitis. I have high ANA titers and rheumatoid factor but do not have RA. They have suggested I may have panniculitis, collagen disease, connective tissue d/o, mixed connective tissue disease, small vessel neuropathy, alopecia, and/ or scleroderma. I was told I had arthritis by a foot doctor then told I didn't have it by another doctor.

My lower legs have been bright red and look and feel like a severe sunburn for about 4 years and the ankles and feet have hemosiderin deposits. What happens here (US) drs are corporate now and have 6 minutes per a visit. So many things never get follow up. Like I have never had a skin biopsy. Which with all this... one would think I would have had one. They cannot cover but one thing per a visit.

Great topic and happy to read all the responses.

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