Sjogren Syndrome?

[Seagu11]

Tapering Pred new symptoms. Looks like I may be suffering this. Anyone heard of it?

Do I need to increase Preds,presently on 4mg ?

[PMRpro Ambassador]

I don't think pred helps Sjogren's so not a lot of point increasing the pred dose. Most of what is done is managing symptoms - predominantly dryness.

Have you been checked for the antibody? There is also a syndrome called sicca syndrome - same thing but without the antibodies. There are quite a few people with Sjogrens/sicca on the LupusUK forum on this platform. If it becomes advanced then there other medications which may help.

[Hidden]

I am sure they have already advised you to get toothpaste that does not have Sodium Lauryl Sulfate (SLS) in it- advised by dental therapist. It contributes to dry mouth. My dry mouth is due to meds. I used to get plaque mucus in my mouth all the time. Changed toothpaste and whilst still dry mouth sometimes the stringy mucus gone (mm lovely).

[Soraya_PMR]

Just in case you didn’t know, Venus Williams has Sjogren’s.

themighty.com/2018/08/venus...

[Aleish]

Got it too. It only causes some dry eye issues for me. I don’t know if it contributes to body pain.

[Blearyeyed]

Lots of drugs increase dry eye and dry mouth symptoms.

You can have both Dry Eye Syndrome and Dry Mouth Syndrome and not have Sjorgrens , that is a particular condition which includes these symptoms plus drying of other mucous producing glands in the body .

Dry Eye and Dry Mouth or Secondary Sjorgrens can be suffered along with a number of different conditions but not all mucous reduction illnesses are automatically Sjorgrens.

If you are having Sjorgrens like symptoms or both Dry Eye and Mouth you need to be tested via referral for lip biopsy by the ENT of Rheumatology after you have tested positive for Saliva reduction and Schirmer Eye tests .

I have severe Dry Eye and Mouth but tested negative for Sjorgrens from a biopsy. The other syndromes are made worse by many foods , drugs and environmental triggers and have the same basic care plan as Sjorgrens.

If you are suffering from Dry Eye Syndrome you need to see a GP or Optometrist to get the right lubricating drops to prevent drying out. A good nutrient eye gel for night time is usually advisable , like Vitapos A because often it's deficiency in vitamins in the eye oils that make dry eyes worse.

Wearing protective glasses in dry , hot or windy environments is required .

Spritzing your eyes with cool water while closed helps reduce inflammation.

They advice you to reduce and limit screen time of any sort to short bursts only .

If it's dry mouth they advise using saliva tablets or sucking pineapple or lemon before eating.

Drinking regularly and often .

Gargling with warm green tea to soothe any scratching.

Eating small mouthfuls , softer foods with plenty of fluid between mouthfuls , reducing caffiene , spicy foods , sugary foods and things that reduce your saliva.

Finding your mouth after food but not brushing your teeth until at least 30 minutes after food to prevent dry out and reducing the saliva available in the mouth to clear bacteria without softening your enamel.

The main objective of dry mouth care us to prevent tooth decay. Regular check ups , more often at the dentist to monitor your dry mouth is required.

Manipulating your cheeks before eating is also advised to help stimulate saliva and also prevent sale can gland stones.

You obviously need your medications , but even if it turns out to be Sjorgrens , these techniques are mainly what is recommended .

[PMRdaughter in reply to Blearyeyed]

Good advice!

[JanetGarrettN]

A very thorough list. I would only add the use of preservative-free only for eye drops. I have dealt with Sjogren's eyes nose mouth for longer than I can remember. We have something here in the States called xylimelts just a con and dissolve between the gum and cheek. They do an excellent job last for about 4 hours. Can be used at night going to sleep also.

[PMRdaughter]

I’m a dental hygienist and I see this in practice. There is a oral care brand I’d suggest you use, it’s called Biotine. They have oral gels(which can be used any time in the day but really helpful at night), oral rinses (I always recommend swishing around with it and gargling), a tooth paste as well. You can ask your dentist about it. There’s also another rinse that some dental offices may carry, called Closys II. You can either use it plain, or it also comes with a small vial of mint flavour, which you can add. BE CAREFUL OF SUGAR INTAKE. Because you don’t have the natural saliva flow, you are at high risk for cavities and damage to the enamel surface. So make sure to brush after meals, floss at night before bed, don’t snack often, stay away from too much sugar, including fruit, consider using a high fluoride tooth paste (Colgate Prevident 5000Plus can be bought over the counter at the pharmacy), drink lots of water. Make sure to take Omega 3 fish oil. You can also take a tsp of coconut oil and swish around in your mouth for 30-60 seconds and SPIT IN THE GARBAGE NOT THE SINK. Coconut oil will help lubricator your mouth. Xylitol as a sugar substitute is best if you have trouble with cutting out sugar. Xylitol makes thentooth a slippery surface for the cavity causing bacteria to adhere to. Eye drop lubrication will help with the eyes. Go to your optometrist for the best advice on that. A humidifier in your bedroom at night will help to breathe better. And lastly, try to find ways to rest your sympathetic nervous system. Try meditation or yoga, or get yourself into puzzles or get an adult colouring book. Reducing stress and resting your brain and your body will help your body recover and lower cortisol levels and maybe help bump this nasty and annoying condition into remission.

[PMRdaughter in reply to PMRdaughter]

Sorry for the typos. I am thong from my iPad and it autocorrects and I don’t often see it

[PMRdaughter in reply to PMRdaughter]

For God sakes! Not Thong, meant to say *typing from my iPad ughh!

[Hidden in reply to PMRdaughter]

😂😂😂 I know that autocorrect feeling.