I'd like to thank all of you who submitted their suggestions for topics to be covered in 2018. We're going to start the year discussing a symptom that many people experience; dry eyes and mouth.
We want to hear if you have any tips for alleviating these symptoms. Have you found any eye-drops that are particularly effective? What do you do if you have a dry mouth? Have changes in your diet or lifestyle had any impact on these symptoms?
We would like to hear all of your tips and experiences (good and bad) and we’ll compile them towards the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk
The article itself will be posted on the LUPUS UK Blog at
Hi Paul. I have lupus SLE. I am a hygienist so can advise on dry mouths if people need. One dental negative if a dry mouth is dental decay ( caries). The reason is saliva acts as a buffer for the pH level in your mouth. If there is less saliva the environment is more acidic there for tooth enamel and dentine is compromised. Another dental negative is people with lupus are more prevalent to a bacteria called Porphyromanas Gingivalis. This is a gram negative bacteria and is a cause of gum and periodontal disease. Also people with lupus have a low ESR which means they are more prone to inflammation caused by bacteria in their mouth. Again a negative of a low saliva flow as the saliva isn’t killing this bacteria.
Ways to combat dry mouth and prevent decay are to chew sugar free gum after meals ( really important) and there are saliva substitutes you can get from pharmacies. Biotene is a good one. They sell mouth washes and gums.
Also make sure you see a hygienist regularly every 3 months if possible. This helps keep the inflammation down in your body which can have a knock on affect on the rest of your health.
Make sure you brush 2 x daily and floss and clean between all teeth 2 x daily too again this keep bacteria under control.
There is loads more I can say but I’ve waffled enough. If you need any more information please ask.
biotene have changed the formula [and wording on biottle] for mouth wash since I first used it - now a stronger taste and doesn't agree with my mouth, too much burning - waste of an expensive bottle and don't know what else to use, it was excellent.
I do spoken word art work and used biotene in little sips in run up to a reading.
I have SLE & as MandaH1 said sugar free gum really helps with the dryness & was recommended by my consultant, but I didn't know about the detailed stuff to do with the effects on teeth & gums, so thank you very much for that. Re eye dryness my GP prescribes hypromellose drops which are good and my optician recommends them as well for long term eye health.
The sugar free gum will stimulate the saliva flow. This in turn will even out the pH level in your mouth and reduce the acidity from carbohydrates in food. This will prevent the teeth from decaying. It should also help the mouth to feel more salivated and comfortable. X
I am having a nightmare time at the moment. My mouth so dry with the Sjogrens and oral thrush. I usually use sugar free sweets to help. But with the thrush I can’t take them as the sweetener is aggravating it. I am using Salivix during the day but at night I am trying. XyliMelts. I got on ok for the first part of the night bu when I put another one in later it dried my mouth up. I also use Biotene at night to help. I have a Cpap machine as I also have sleep apnea. For my dry eyes (which isn’t as bad) I use Hylo Forte. Which will last 6 month rather than the usual month. With the dry eyes and mouth I am dry everywhere else. The Sjogrens dries the whole body so I use lots of body creams and Estradiol pessaries plus Sylk vaginal moisturiser to try to moisten every thing.
I keep sugar free gum in every handy place such as handbags, pockets of my coats, pockets on the bag of my ambulatory oxygen and in every car (mine,family and friends). I chew gum to stimulate my salivary gland and was told to do so at my very first appointment with the Rheumatologist.
For my dry eyes I use Hylo-Forte several times during the day and at night I use Viscotears and Lacrilube before I fall asleep and also several times during the night, sometimes every two hours during the night.
I used to use hypromellose eye drops a few times a day then was given lacrilube eye ointment/ gel and found this much better. I used it each night before bed and that was it. I did try and use it one morning but I couldn’t see a thing for ages so wouldn’t advise that! But found it great putting it in before bed, didn’t need any eye drops thru day at all.
I use hyloforte eye drops during the day and lacrilube gel at night - I am not very good at putting the latter in though, might be because it is cold in my bedroom, I find it hard to control the gel! This combination certainly helps with my tear film and was recommended by my ophthalmologist.
Yes the gel does come out uncontrollably but u just have to be quick and I think I end up having to use my clean finger to apply it to lower lid and just get the lacrilube lid back on quickly!
My rhumy diagnosed shrojens (sorry cant spell) he asked me about gum desease which has never been a problem but one thing is that quite often toast crackers etc make roof of mouth sore cut it easy sort of graze it is that normal
You may wish to do your own post on here to see if other people with Sjogren's syndrome have the same problem - I'm sure you'll get plenty of responses. Also, if you need more information about Sjogren's, take a look at the British Sjogren's Syndrome Association (BSSA) at bssa.uk.net/
Like pretty much everybody else I use gum & like Maureenpearl keep it everywhere!
For the dry eyes I use Optive eyedrops (prescribed), I used to use hypomellows & learnt after years of use that they were not supposed to sting! Ooops!
I used to use Lacrilube at night but I really couldn't get on with it, I hated the thickness of it, the fact that I would wake up with it all over the place because it had seeped during the night & I especially hated having to pull it off my lashes so I could open my eyes in the morning. Unfortunately my GP isn't able to prescribe Viscotears but that was also recommended.
Had my eyes checked a few weeks ago, optician prescribed me preservative free lacri-lube to put in last thing at night. My gp prescribed preservative free carmellose eye drops to use during day. The individual capsules are great to carry around. Also at night I use a heat pad for my eyes, doc says it helps release the oils, after 10 minutes I massage my eye lids. My lids still stick together when I wake up even after doing all this. I'm one away on opticians chart from having no tears. It's scary having to prise my eye open when I wake up.
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