If I dont have a dry mouth could I still have sjogrens?

[tmoxon]

I have had an operation on my eyes, lens replacement last year, I now have awful dry eyes, when I look that ailment up it suggests Sjogrens syndrome, I do have Coeliac disease and also dry skin and other issues but not a dry mouth, if anything at times it is as if I am producing more saliva. If my mouth is not dry could I still have sjogrens ? The reason i ask is I was misdiagnosed in regards to the cd for many years

[Littlemisssunshine87]

Sjogrens is much more than dry eyes alone and there are blood tests and other diagnostic criteria to get a diagnosis of sjogrens. However to answer you better my rheumatologist says he has patients with sjogrens who don’t have dry eye or dry mouth or some other components of the disease. As it’s progressive these can take time to show up. I have sjogrens and don’t have a particularly bothersome dry mouth, I’m thirsty a lot and don’t dribble in my sleep anymore but I am still producing saliva. My eyes and fatigue are most bothersome to me and effect my everyday life. If your dry eye came after eye surgery I would be leaning more towards that being the problem but you need to go and see your dr and get testing done if you think you might have sjogrens.

[tmoxon in reply to Littlemisssunshine87]

Thank you for your advice, you are most probably correct that it is due to the surgery but it is interesting to find out that some people dont have a dry mouth.

[Littlemisssunshine87 in reply to tmoxon]

Those are just the 2 most recognised symptoms with sjogrens. It affects the whole body. Definitely ask your Dr about it though and get tested to rule it out properly. Regardless of what’s causing it dry eye can be debilitating and I hope you can find what the cause is x

[tmoxon in reply to Littlemisssunshine87]

Hi thank you, I was a bit hesitant at going to the GP's as to be honest I think they fob you off if they can, also if Sjogrens is anything like Coeliac disease I have seen many people being told totally incorrect advice by their own doctors only to come on forums like this to get better advice, which was the reason for asking whether it was possible to get it and not have a dry mouth.

As for the dry eyes according to the optician it is severe and to be honest I am finding it a nuisance, I been advised to take Omega 3 tablets and keep using the eye drops I have been prescribed but I am disappointed that I have been left with this problem. I have just looked at the blood tests I had a few months ago and the only abnormal ones were slightly high platelets ( this is normal for me and slightly low white cell count, just done a search online and it would appear that Sjogrens is linked to low platelets rather than high ones x

[Littlemisssunshine87 in reply to tmoxon]

Ohh yes totally relate, it took me 4 years of seeing all sorts of different Drs before they finally did the ANA bloods which then led me to my rheumatologist and my sjogrens diagnosis.

Has the consultant who did your surgery been of any help? I haven’t found opticians helpful to be honest, seeing an ophthalmologist may be your next step and get access to more treatment. I’ve just seen a private one to try and help my eye symptoms more as the nhs weren’t helping me enough x

[tmoxon in reply to Littlemisssunshine87]

I went private for the lens replacement, I think that is why I feel a bit annoyed at the dry eyes I have at the moment as it is self inflicted. I could see perfectly well until it came to reading which had become a pain especially due to the coeliac as you need to read ingredients, I had reading specs everywhere and found it annoying when I had to look for specs to read the simplest things so went private. My sight is great for reading now and apparently the surgery is very good but I have now been left with this uncomfortable feeling. I wrote to the surgeon last month but he didnt suggest anything more than I am already doing which is microwave heat pack every morning, then massaging my eyes. Optase Omega Vision 60 Softgel tablets and eye drops during the day and a thicker one for the night, to be honest when I do all of the above all of the time it appears to irritate my eyes more sometimes. I found a really good optician in our area, the last appointment I had she didnt charge me for and said she would be able to claim the payment from my gp surgery. Could you advise what other treatments are available please ? thanks again x

[Littlemisssunshine87 in reply to tmoxon]

What eye drops are you currently on? I have the hyloforte ones prescribed. Well I initially went private to discuss the lipiflow and Meibomian gland probing treatments, but he suggested that cyclosporine eye drops would be more beneficial for me. Saved me £2k anyway!

So I’m just waiting for my letter to come through and hoping my GP will take on shared care as he’s recommend but if not I’ll have to get a private prescription. There’s 2 types of dry eye and finding out which one you have will determine what treatment is best for you. Some find relief from plugs. All needs to be treated on an individual basis. I don’t know where you are based but the private ophthalmologist I went to was in Manchester, they also have a clinic in London they specialise in dry eyes x

[tmoxon in reply to Littlemisssunshine87]

Thanks again, I have xailin eye drops, the day and night ones, the night ones are more of an ointment and I usually end up with swollen eyes after using the night time one. I did wonder about using Castor oil?

When I went for a check up after my operation the surgeon said he would put plugs in my eyes, this wasn't a planed thing but something that was suggested whilst I was already there for the scheduled check up, then when it came to do it he found he didn't have the correct size plugs, my tear ducts were too small so it was just dismissed and not mentioned again, this would have been paid for as part of the treatment of the surgery.

Before I considered the lens surgery I had to go to the doctors on a couple of occasions for meibomian cysts, I asked the GP whether this could be an ongoing issue( maybe due to autoimmune disease issues) and he told me that it was unlikely, now I am wondering whether there was something before the operation and the op has exacerbated it. I also wonder whether the surgeon should have asked me about meibomian cysts if it is related before the surgery.

I hope you do manage to get your treatment on the NHS. I am in East Yorks so not too far from Manchester, although I would be loathed to spend anymore on private treatment to be honest, I had the surgery at Bradford Eye hospital. x

[Littlemisssunshine87 in reply to tmoxon]

I’d ask your surgeon about the plugs if they were to be included in the initial cost. It might end up really helping you. However if you were referred to an ophthalmologist on the nhs this may be a treatment option for you from them. I hope your GP will be useful to you and if you feel you need to seek a second opinion from another to get what you need testing then do. You could also get an nhs referral to an eye hospital from your optician.

It doesn’t help that Drs don’t really know much about sjogrens in the first place. Even some rheumatologists! I was only told at my appointment yesterday that the pain in my hands isn’t linked to my sjogrens 🤷🏼‍♀️ but last time I was told that it was by my regular rhuemy, not all drs think the same about these diseases. We don’t all fit neatly into a box and it’s best to have a dr who is willing to think outside it. Keep us updated and best of luck x

[tmoxon in reply to Littlemisssunshine87]

Hi again the plugs weren't included in the cost, I seemed to have more issues than other people had with their surgery, Bradford is a quite a distance for us and whilst I think we were only going to go once for a check up after the operations I seem to have to attend far more so it became a pain going back and forth all of the time so it was a case that I had dry eyes and the surgeon suggested it as a treatment.

Thanks very much for all of your advice and help, i will let you know if i do find out I have another autoimmune disease , I hope you manage to get sorted out x

[MichelleHarris in reply to Littlemisssunshine87]

Hi Littlemisssunshine87 can you private message me details of your private Opthalmologist in Manchester please?

[kalona46 in reply to tmoxon]

Hi,

I'm new here and diagnosed with Sjogren's by my Ophthalmologist during an exam for Cataracts. He immediately put in Punctal plugs in my lower tear ducts, yes we have two sets. Plus, he saw that I could not be without my bottle of water because of my severe dry mouth, my two presenting symptoms. I suggest going to Sjogrens.org they have the most thorough information and continually do research. They provide pictures of the parts of the body that it affects, so much easier to share with your loved ones. I was hospitalized in Las Vegas, NV last summer for a COPD exacerbation and the EMTs, and none of the emergency room doctors or nurses knew about Sjogren's. Some had heard of it. Whatever, you do...don't let it freak you out. I use eye drops 4 times a day, more if I am outside during high pollen days. I use Systane Ultra. Whatever you use, make sure it is for dry eyes. Not regular drops. It is always good to wear sunglasses.

Sjogren's is a chronic autoimmune disease in which white blood cells attack and damage the moisture-producing glands in a person's body. Sjogren's strikes 1 in every 70 people, 90% are women. I sure hope this helps. Btw, my RA doctor was uninformed.

[Hidden]

As others have said ocular and oral dryness are just the tip of iceberg for most of us. I have had dry eyes since I was a kid - diagnosed with hypothyroidism about 17 years ago, then RA. So sicca (Sjögren’s) was listed as my optician did find my eyes very dry. But not my mouth - only medications make my mouth dry - yet my nose, ears, throat and digestive tract are terribly dry. But still I was told I couldn’t have full blown Sjögren’s if my salivary function was fine.

Then came small fibre neuropathy everywhere, gut problems at both ends, gastritis, balance issues, tinnitus, Raynaud’s, Erythromelagia etc. I had a lip biopsy when I relocated, ANA was positive and it was 100% positive so I was rediagnosed from seronegative RA to seronegative Sjögren’s. To be honest this has turned my whole life upside down and I’ve had a real battle with multiple specialists for proper joined up treatment and care. I’m still battling because a UK Sjögren’s expert I saw privately has diagnosed overlap

connective tissue disease - yet my Scottish NHS team have tried to discharge me back to my useless, Fort Knox GP practice?! Second opinion pending, dermatology (I have precancerous condition on my lips) furious on my behalf - lah de lah.

As you have Coeliac you may well have other autoimmunity eg thyroid - absolutely worth asking GP to get a full autoimmune panel done despite your full blood count being fine. For me the main issues I have are guts, neuropathy, Raynaud’s and severe fatigue. For you it might be eyes. I’m just giving you my story in brief to show that there are no set in stone symptoms Sjögren’s. Coeliac affects around 1 per 100 - Sjögren’s is only diagnosed in 1 per 2000 so GPs really don’t have that many diagnosed patients. Therefore you need to be well informed and proactive if and when you seek a referral to rheumatology for a diagnosis.

[tmoxon in reply to Hidden]

Hi sorry to hear of all your issues, it sounds like a minefield, it’s bad enough feeling poorly without having to research things yourself and be passed from pillar to post. You can understand why people just think sod it and give up.

Thanks for explaining about the symptoms and your salivary function, I have seen so many people on various forums about coeliac say, “the GP said I couldn’t have coeliac disease because I am not underweight, don’t have stomach issues, have no symptoms at all”.

When I look back at my own medical history, the severity of issues I had changed even though I must have still had the problem as I had the rash associated with it. I was diagnosed with CD in 2011 and instead of feeling great I felt awful despite sticking to the gluten free diet, I am starting to feel better now but still have days where I need to rest etc.

I had private blood tests for thyroid and they said on the thyroid page my thyroid was struggling, however its not bad enough for the NHS to get involved and I cannot afford to go private.

I will see how I go on and if I get worse ask for the auto immune blood tests, I asked for blood tests a few months ago to check things like vitamins etc and it wasn’t as easy to get them as it used to be, we used to get them every year due to being coeliac but the rules are now changed. I think they think carefully before spending any money they don’t need to nowadays.

Thanks for your help, I really hope you get the treatment sorted out and your lip is alright x

[Hidden in reply to tmoxon]

Thanks. Yes I have a friend who was diagnosed with CD a few years ago and she seems to manage it quite well but then she’s had breast cancer and other issues since diagnosis. Also the neuro physio I’m seeing in an hour has CD. The difference between them and other CD friends and me is that they are still able to work and to function as long as they keep rigidly to their gf diet.

Sjögren’s is systemic and there is more medical and societal ignorance about it than any other autoimmune disease I’ve found. Also it causes more fatigue and many more co-morbidites - partly due to it being viewed as an orphan disease that mostly just caused eye and mouth dryness and fatigue.

My GP practice is usually okay at honouring my requests once I see a GP and they see my notes. But presently I can only book on the day appointments or see a GP I don’t know up to only 5 days ahead. And given the 10 minute appointment time it’s impossible to cram all the matters into this so I end up seeing an average of one a week just now about so many different things?! How very unsatisfactory and time consuming is this and what bad use of NHS resources too.

I hope you fare better with yours but I’d definitely pursue the antibodies - including thyroid ones - because if they are telling you on thyroid UK that your thyroid bloods suggest borderline hypothyroidism - then treatment might help your severely dry eyes.

[tmoxon in reply to Hidden]

Hi Sorry not to have responded sooner. Just wanted to say I hope you got on ok at the neuro physio and to thank you for your help. I hope you start to feel better soon x

[SusieW2]

There are so many inflammation related conditions and I don't know any two people who've had the same progression. Also we're just treating symptoms as they don't really understand Sjogren's or have a targeted treatment. So do what helps you feel and function better.

[tmoxon]

thanks for the advice Susie

[HealthBuddyMelissa]

I have chronic dry mouth and have tested negative for Sjogrens. I also have dry eyes. I find it helps a lot to eat a low sodium diet and drink plenty of fluids.

[MichelleHarris in reply to HealthBuddyMelissa]

Hi HealthBuddyMelissa. The Rhuematolgist I saw said I didnt have it but an U/S scan has shown I have. Maybe the same with you. Have you had an U/S scan of your neck and salivary glands?

[HealthBuddyMelissa in reply to MichelleHarris]

No that was not offered to me. But I did have a salivary gland biopsy which was a very unpleasant procedure and it was negative.

[MichelleHarris in reply to HealthBuddyMelissa]

Gosh that sounds so unecesarily invasive. Can you request an U/S scan?

[HealthBuddyMelissa in reply to MichelleHarris]

I don't see the Rheumatolagist anymore as they said the biopsy was proof. The lab markers were also negative.

[tmoxon]

thanks Melissa