Sjögren’s syndrome : I am suffering with bad... - LUPUS UK

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Sjögren’s syndrome

favour6 profile image

I am suffering with bad Sjogren’s syndrome because of lupus which means I have dry eyes, dry nostrils, dry mouth, dry skin. Basically dry mucosa anywhere in my body. Does any one have this experience and what have you used to get rid of it. I have used preservative free eye drops as advised by the doctor and moisturiser for my skin but the dryness still comes back and is constant. Many thanks

41 Replies

You should try calling the BSSA. They have a nurse helpline.

I've got secondary Sjrogrens and I also take the same eye drops but is your environment producing dry air? If so, first and foremost, what helps me, is to have a hot bath. The steam alleviates the symptoms. Also a hot compress on the eyes. Apparently, investing in an air humidifier helps as well.

For dry mouth, there are lozenges you can get from your local pharmacist.

They help but do you use a high floride toothpaste and an alcohol free mouthwash? The latter can be purchased from a pharmacist and the former, the toothpaste, I would make an emergency appointment with your local dentist and get them to prescribe it for you. All in all, you need to be with a good dentist who knows about this condition. Seeing the hygienist regularly is also important. Overall, mouth hygiene is paramount with Sjrogrens.

Stay away from spicy foods, salty foods and alcohol until it has subsided. Drink water and I've found sipping it via a straw helps with, if you also experience this, choking.

For the skin, what cream are you using? I use Diprobase and my baths are - when my skin is really dry - luke warm baths. Stay away from soaps when you're having a flare and ask the GP to prescribe you a soap substitute.

If it becomes too excruciating (because it can!), either make an emergency appointment with your GP or head on down to accident and emergency.

favour6 profile image
favour6 in reply to Amakura

Thanks Amakura for your advise and your input. I appreciate. I have high fluoride toothpaste , lozenges, and I try to drink water most of the time. It’s well. I suppose it will reduce when it wants to. Many thanks .

Hi Amakura, I was wondering if you use heat pads on your eyes if it still works for evaporative dry eyes. Thanks in advance

Apologies for the delayed response and yes, I still use heat pads - as advised via the BSSA - over my eyes because I'm prone to chalazion as well. The ones that you can heat via the microwave (if you go to Amazon: type in 'The Eye Doctor Essential Hot Eye Compress')

Yes, it definitely does help....eventually, as you have to maintain a routine. It's an accumulative solution - that's what I found anyway.

Why, have you tried it or thinking about giving it a go?

Hope that helps.

Unfortunately it didn't work for me, so I thought maybe because my tears evaporate too quickly anyway and with the heat make my eyes worse. I'm glad it works for you though Amakura, so good to hear something that is so effective.😊

So sorry to read that it doesn't work for you. Hot baths do the trick but the relief is short lived. Have you managed to locate an alternative that works for you instead?

When I used it religiously 3 times a day it felt as though my eye lids where getting cleaned out and more moisture but later on in the day I'd get a worse effect of dry eye symptoms such as eye gritty feeling and an occurrence of those awful eye filaments. So I use it occasionally when I feel as though that could be the solution at that time. I know a lot of people really benefit from it and that's great.

Treetop33 profile image
Treetop33 in reply to Amakura

You mention soap substitutes and what I use for skin is coconut oil for washing (it is antibacterial) and sweet almond oil for moisturising. I probably have SD though it is kind of treated as incidental. I have eye drops prescribed though, which are a blessing (Hylocare). I drink lots of water. I have all sorts of concoctions for my vagina (not sure if that's SD or menopause!).

Try this useful info pdf from the BSSA:

bssa.uk.net/pdfs/informatio...

Contact info is provided.

Note that GP should prescribe moisturising mouthwash or gel. Also dry eye moisturiser is also available for prescription or off the pharmacy shelf.

favour6 profile image
favour6 in reply to Betty909090

Thanks so much for this information Betty909090. I appreciate.

Amakura profile image
Amakura in reply to Betty909090

Well, I've learnt something new because my GP doesn't prescribe mouthwash or gel but only the eye moisturiser. I'll be having words very, very soon (with the GP). Thank you!

I dont know if i have Sjogrens but I do have many of the pointers of Lupus-just fobbed off by different doctors who dont like to make diagnoses and say "there are many conditions that cause a "butterfly rash" and other symptoms but do not consider or investigate any.,My GP prescribed Oralieve dry mouth /moisturising Mouth gel for my dry mouth.

Thank you so much TheAfricanQueen🙏🏽

Unfortunately, being fobbed off persistently and as shared via the Lupus UK forum, is quite common leading up to a diagnosis of Lupus or any of its associated conditions, such as Sjogren's amongst others. Have you tried going privately not only specifically for a diagnosis but for someone to provide you with an uninterrupted platform to discuss your symptoms without prejudice? After then, your GP would have no choice but to refer you to an NHS Rheumatologist. They tend not to rebut a specialist within this particular field.

I did it and it was not only helpful but empowering, at the same time.

Just a thought, perhaps.

thank you for your reply.i cannot go private as getting to private clinics is an issue due to my location and location of clinics which are not easily accessible by public transport.previous experience of "going private" was the private doctors are actually NHSdoctors doing private work.so no better.i have seen two NHS rheumatologists -neither of which even asked about my symptoms.i am waiting to see a Lupus specialist and Pagets specialist but 6 months on since GP wrote to them have not received any appointments despite GP chasing them up too.Am waiting to see my gp who is on holiday this week to put to him why i have my symptoms if not lupus or pagets.its also been 6 months since i was referred to gastroenterology with no appt as yet.

What's the best mouth lubricator?

Probably Biotene?

Thanks!

My Rheumy just used to ignore my pleas for help with dry eyes and mouth. After years of moaning she finally referred me to ophthalmology. Punctual plugs were put in and they have helped me so much. I use salivax pastilles when I’m out and desperate for a drink. My dentist gave me a high fluoride toothpaste but told me to suck ice cubes but you can’t carry them in your bag. I shower with dermol shower cream prescribed and also get a moisturiser. Apart from these things there doesn’t seem to be a magic pill for this disease, but it’s terrible we have to moan for years to be heard.

Hi Lizard, I've been prescribed Pilocarpine 2.5mg tablet to increase saliva and tear production. Although the affect for me isn't as normal as before I was diagnosed with this unfortunate condition it is better than without anything. So for me it does feel like a miracle drug which if folk can tolerate it is worth a try. I only take 2.5mg as opposed to the full strength as I get Asthma and I think it could potentially make it worse but this dose over 4 times a day is very good.

favour6 profile image
favour6 in reply to Lizard28

Thank you so much. Lizard28. Really appreciate. Very informative. It is well. Big hug.

Preservative free eye drops are better than preservative ones, or so I’ve been told. You might need a thicker gel also, I use viscotears and my heat mask is the best! As well as what others have suggested nasal sprays help. For the mouth there is also myxolites ( think that’s how it’s spelt) you pop a tablet in your mouth, which sticks to the gum and then slowly realeases to help saliva.

Have you tried pilocarpine? This might help with dryness within the body, not everyone can tolerate it, but it’s worth asking the GP/consultant.

Moisturiser and more moisturiser for your skin.

I sometimes feel that sjogrens causes me more problems than lupus! I’ve tried. Any various products before finding the o es that suited me. I hope you find the ones that work for you. 🙂

I have the same problems I take Glandsane synthetic saliva for dryness of the mouth, it doesn't seem to make much difference but I will give anything a go, also eye drops ....I have just started chopping cucumber & put into tubs & eat through out the day & I find that maybe it will help as I was drinking so much that I spent most of the day in the loo.Hope this helps

You can't get rid of Sjogrens symptoms but you can make them better using the advice others have given here. I also take hydroxychloroquine and pilocarpine prescribed by the Rheumatologist. I think both of these have improved my symptoms to a degree but I still need the regime of eye drops, eye spray, xylimelts, oestrogen pessaries, E45 every day, just a little less since taking medication.

Redfox25 profile image
Redfox25 in reply to dg70

Hi Dg70, my mum has sjogrens and I was wondering whether you can be on hydroxychloroquine for sjogrens? She is having problems with her teeth and I think she should see a rheumatologist to see if there is something they can help with. Thanks

dg70 profile image
dg70 in reply to Redfox25

Yes I have Lupus and Sjogrens but my Sjogrens symptoms are by far the most to deal with at the moment. The Rheumatologist put me on Hydroxychloroquine as it helps a little with fatigue as well as joint pain and other things. I have constant fatigue and hydroxy has helped a little. She should definitely see a Rheumatologist as they take regular blood tests that a GP doesn't do. They also help manage your symptoms and give advice and medication. Do ask for one that has experience and knowledge of Sjogrens as there are some out there who really don't specialise or it seem to have an interest in Sjogrens. Same with the dentist. They should go on courses about Sjogrens now but I would recommend finding a dentist that knows about Sjogrens and seeing a Hygienist several times a year is a must. You have to be so careful and so meticulous with your teeth or losing them is often what will happen. I brush three times a day with a high flouride and baking soda toothpaste. There are special mouthwashes too. I floss and use a dental stick every day. Your saliva is less and often can change to actually attack your teeth so you have to keep the enamel and gums protected as best you can. I have lost a few teeth but I'm determined to keep what's left. I'm still only early fifties. Help your mum to find the best treatment from the best specialists she can. Watch the you tube conferences from Sjogrens experts like Elizabeth Price as they give so much advice too.

I'm prescribed Double Base gel which helps the skin.

I have to admit for the teeth and mouth dryness I have to use a very mild toothpaste again prescribed in the UK by my dentist Duraphat 5000ppm which is a fluoride toothpaste and very mild on the gums.

But really for much of the dryness I can tolerate Pilocarpine 2.5mg 4 times a day which must be helping me especially swallowing and tasting food which people sometimes forget can happen with this condition.

I also have Oestrogen cream for dryness which is a hormone to help to make me feel comfortable in the other region.

I've also heard that is you keep drinking too much water it can actually have the opposite effect and take away from of the mouth natural saliva and make the mouth much dryer. I have found this to be the case and makes me much worse as a result. I then carry a packet of sugar free polo mints which is great in increasing saliva and making the mouth moist.

Many thanks Richblessings. We mustn’t stop ourselves from drinking water. Water is very important in this condition and to rehydrate our system.

Yes, I do agree totally. I used to bring a water bottle out to sip on when I'm out and about but found it didn't get rid of my dry mouth for that long at all. Unlike sugar free polo mints which stimulated my saliva gland and a bit of a God send as I'm now able to talk to people without not being able to make word sounds due to dry mouth. Hope this helps.

Yes I've had a ton of trouble with this the last few months. A humidifier has helped, turned off the central heating. Keeping stress as low as possible. Starting HRT improved things (oestrogel and utrogestan) if your of an age where hormones are dropping off too which seems to make it worse. I've got eye gel for night and drops for the day

Got my sugar consumption right down which has made a big difference.

bathing and washing with Hydromol (which is a thick emollient - run on your hands under the tap and it turns to a lovely moistursier!)

H,I also suffer from Sjogrens.After trial and error the GP prescribed me clinitas carbomer gel.it works well,but I only get 1 tube monthly.

I buy viscotears from Amazon to supplement the 1 tube.

My mouth gets really dry and sore.

I rang the rheumatology nurse helpline.she suggested 2 options.

I’ll send you the name of them later.

Im having a rest not.

When it gets really sore,I use Nystan,at the moment it’s on repeat prescription,which is also good.

I’m prescribed Glandosane synthetic saliva AndXerostem saliva substitute gel.

Both prescribed on the recommendation of the rheumatology nurse

Hi i had sjrogens a long time before i had lupus. Ihave found the best thing for my mouth dryness was biotene oral gel which was prescribed by the dental hospital in london. My dentist now precribes it for me. I found an ointment called lacrilube at night was good for myeyes. Available to buy or on prescription. You definitely need a good dentist and need to be refered to an opthalmogogy dept. If your won't refer you go to an optician they can do it

favour6 profile image
favour6 in reply to Factor50--

Many thanks Factor 50🙏🏽

Hello favour6,

I was diagnosed with Sjogren's and Mild Lupus October 2020. Fibromyalgia Jan 2014.

With environmental factors to contend with, you will learn to fine tune overtime. It will feel like juggling to begin with. Please do persist with regime.....

I use Hyloforte, am/pm along with Blaphasol daily eyelid cleansing am/pm.

Optive Plus (triple action) eye drops as needed throughout day. Before I go to bed at night, Xaillin night ointment (soothes).

Hydromol ointment was recommended by Dermatologist on 18 May, and it works like Magic. Soap substitute but you feel wonderful.

Skin care - I use Doublebase gel daily Adex gel (when skin breaks out in red spots or blemishes)

Dermol lotion for real itchy momemts

My GP prescribes Corsdyl daily Fresh mint - alcohol free. I use am/pm. When mouth/throat in pain. Difflam (Benzydamine 0.15% sugar free.

Colgate Duraphat 5000ppm

Artificial saliva spray works a treat. Saliveze or Salivax. Simply spray a few squirts into mouth as and when....eases dryness.

I also drink herbal drinks, aloe vera. This helps with throat cloggyness.

Sterimar Congestion Relief helps with ent tract. Face steamer relieves tension.

You need a good network of healthcare working together; Dentist, Optician. Rheumatologist, Dermatologist, GP.

It will become like second nature. Relax your system with rest, warm baths xxx

Hi favour6 - i have Sjogrens and always since birth had v dry, flaking, cracked skin. Decades ago I found the Eucerin brand, and use their 10% urea body lotion but also add lots of Aveda Rescue Oil (has lavender in it) into the mix which makes a HUGE difference. I only use delicate washing products - eucerin also do body wash for v dry skin but there are tons of options brand wise. I have to make sure no man made fragrances are in anything I put on my bod - and wash clothes etc using Boots For sensitive skin detergent - and ensure the last rinse is full of non bubbly water.. I add water to the top of my washing machine to make sure enough water rinsing everything. Drink tons of water all day too. 3 litres. Makes a big difference.

I have a humidifier on in my bedroom as helps at night - do your eyelids stick to your eyeballs at night? Hylo Night is v good, plus the humidifier.. but drinking a large glass of water every hour (I graze!) is essential. I had my tear ducts quarterised in March and had helped a little… but not hugely (symptoms-wise) as my schirmerctest was 3 in one eye and 6 in the other last week.

Started taking high quality collagen 7wks ago and is helping my nails and skin. I make sure I eat lots of oily fish and fruit, veg, wholegrains, seeds/nuts and take lots of good vits too. I dread to think what I’d be like without all that!

Have you jointed the British SJOGRENS association? Great info on their site and in the bumpf they send when you join.

Hope that helps - happy to answer any further questions.

D

Oh and meant to say, I use Eucerin body lotion as it doesn’t have parrafin in it. I’ve tried allsorts of stuff on prescription but all has parrafin in which blocks the skin pores and I feel awful! I used to ged eucerin on prescription but it’s been taken off the list - prob as too expensive! Boots often do 3 for 2 which I always make use of. D

Hey Amarkura

I’ve had Sjogrens for 40 awful years. Nothing works for me unfortunately. I’m allergic to pilocarpine and found all false saliva substitutes a waste of time and ineffective. The only thing I say does help for my dry mouth is oil stripping, where as soon as you wake up you take a spoonful of oil (.ideally a cooking oil eg. Sunflower ) and swish it around your mouth for up to 5 mins and then spit out. DO NOT SWALLOW. This not only helps remove all the toxins you’ve collected in your mouth while sleeping but also lubricates your tongue and ultimately your teeth. Food debris are less likely to hang around but slip away and not remain as dryness causes food to stick too your teeth and tongue. I’ve only discovered this helps in the last 2 years and as a result the lack of saliva has been devastating to my teeth and there’s no dentist out there who is empathetic or understands the devastation it’s caused in my life. Obviously when I cry there’s no tears and the disapproving looks just add to my distress. Sjogrens is a horrible horrible disease and so little is known or done about it in the medical field.

Sorry I cannot help even though I’ve lived with it since I was 9 years old, long before most had either heard about it 😩

Hi I have found an improvement since I started taking pilocarpine tablets 3 or 4 times a day also on hydroxychloroquine and on prednisolone for lupus the pilocarpine is supposed to encourage your endocrine glands to secrete better so every thing is less dry I also have saliva pastels prescribed by my gp xxx

I also have Sjrogrens and have been prescribed Hypromellose eye drops, a nasal spray and for my dry mouth biotenene which helps moisturise my mouth. I also carry water wherever I go. Good luck sorting it all out

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