Morning all. I have recently been diagnosed with secondary sjogrens and wondering if anyone has any tips for helping the dry eyes. I have always struggled with dry eyes and mouth during flares, but now it’s a lot worse and constant. I have been prescribed Pilocarpine for dry mouth and throat which has been really helpful. Currently use hylo eye gel on a night and Xailin drops throughout the day for dry eye, but they just don’t seem to be getting any better. Any suggestions welcome.
thanks x
Hylo Forte eye drops during the day as often as needed along with what else you are prescribed. I found once I was on Hydroxy my eyes improved a lot.
A warm eye mask. I also always wear sunglasses x
I have Clinitas carbomer gel on repeat.
It helps,my problem at the moment is a sore mouth/tongue/ lips.
It drives me silly,I’ve got stuff prescribed,but it only keeps it under some sort of control.
It never goes away completely.
Usb hot eye mask twice a day 15 mins. So soothing and melts the butterry meibomium glands back to oil, this keeps your tears in better and makes your eyes less sore. Try a better eye drop too. Hylo forte is a stronger drop which you can get on prescription.. my ophthalmologist has recently put me on theoloz duo twice a day and then optive plus as many times as I need in-between which is usually four times a day, available on prescription too. I recommend getting a thorough eye check over. I go to a private eye clinic as they have better equipment than the NHS. Not cheap though but the scans and checking of my eyes along with the advice is priceless. They also squeeze my meibomium glands and offer laser opening up of them which I've got to go back for soon. Get better drops and use them often spray actimust a few secs after putting your drops in as the oil helps seal the drop on your eye. Don't wait till your eyes hurt to use drops use many times a day to stop them getting painful. Absolutely no preservative drops or spray, thats vital to be preservative free. Don't let your mouth dry out either keep the xylitol lozenges of any kind or mouth gel for dry mouth. Xylitol actually aids saliva and is good for teeth and gums.
Doing all this is a pain but you get a routine going eventually. It's all a bit of a faff but if it saves eyes and teeth from decline it's worth it. A good ophthalmologist nhs or private is key as they keep up to date on the latest eye drops etc and can monitor your eyes for any decline especially if your taking hydroxychloroquine.
Hi,
Your reply to Alexia01 had lots of good information. I also suffer with Sjogrens and Lupus. Now that days are longer and brighter my eyes are much sorer. I wear sun glasses much more. Have pair of lighter tinted glasses for indoors especially for shopping centres hate the bright lights especially in Zara!!
Have been to see ophthalmologist privately who checked eyes and said early macular degeneration in both eyes. Prescribed Hylo Duo, Mask and gel if required at night , Macu Prime & Actase.
Could I ask when eyes feel hot and burning do you feel your vision slightly off / less sharp. Also regarding teeth I go to dentist regularly as at times get pain in jaws and teeth feel tender. Last time I went they suggested gum shield at night which I had fitted. Not the most comfortable thing to wear when your mouth is dry durning the night. Sorry for all the questions. Have a good day.
My vision seems to be off more than on these days. Quite blurry. Not sure if its the drops themselves or one of our conditions? Every time I go to the opticians they say my sight has not changed much but I often can't see well at all, especially near sight. If it's brain to eyes then an optician probably can't help. It feels like often our issues are spread across many specialities and its finding the right one and even if we do sometimes they can't help. I have no proprioception either which causes dizziness, eye issues and lots of other fun things but its the brain not co-ordinating properly with the body so that could be my issue too.
Connective tissue is all over the body and flares up at any time so pain and numbness etc.. in eyes, jaw, brain and all over the body can pop up then settle down at a whim the GP explained. I was offered a gum shield too but I just thought I would not sleep with it on so declined. My teeth have settled down a bit recently but its never long before another crown, filling or extraction rears its head. Keeping my mouth from drying out as much as possible I think has been helping.
I had tints put in my varifocals so I don't have to change glasses when I'm out now but I'm the same as you bright light indoors means sunglasses sometimes as the tint on normal glasses only works outside in daylight.
Sometimes it feels like you spend all day with all the potions and lotions in a never ending cycle. It gets you down but its the only way to try and stay out of pain and try and live a semi normal life. Most people, even GPs are unaware of what we go through every day but we carry on because that's all we can do. At least we can share with others that understand in places like this. How people coped years ago without internet and support I really don't know. At least we can check advice and research treatments. Have a lovely day. 💜💙
Hi, thank you for your reply. It’s so good to communicate with someone who has same symptoms as myself. All your information really helpful and to realise I am not just imagining things.
One last questions do you by any chance suffer from Reynards? Weather is not so cold now but my right hand starts to go numb once I am up and moving around. yesterday first three fingers were numb /sore most of the day. I put on glove to try and warm up hand did not help much. Any tips on how to get fingers working again. Does not usually last this long.
Have a good week,end.
I'm not sure. My feet go purple if I sit for a while and it's chilly and I have bare feet. My feet and hands are sensitive to hot water. The bottom of feet go bright red and the top stays white. I think it's a circulation problem more than reynauds as I don't get pain when it's cold just a bit of tingling, numbness and stiffness. Perhaps see what your rheumy or gp think.
Thank you I see Rheumatologist later this month will discuss with him.
Regards.
Hi DG70,My only issue is rheumatology and eye consultant taken me off it thinking it was caused by Hydroxychoroquine 🤦now 4 months but it is making everything worse. My mouth. - extremely dry ,skin( lesions spots), eyes, nose, hair, tongue - sore and painful there are red and white bits on them and they sting. As though I have ulcers on my tongue. They burn as well. swelling and pain they are not that evident because they are there only in the morning. And when I am in the sun also sun causes my skin to rash up if I don't apply SPF 50+ ( only one that works now is La Roche Posay)
Dentist already referred me to another consultant for my mouthwash she saw what it looked like took pictures of it . When new consultant could not be bothered to even check when I told her I had dry mouth and eyes and nose.
It is almost like she wants me off her books. Hopefully will get second opinion with this.
I am doing all I can with my eyes with the drops and creams and eye pads but I know they are not working as well . Because my eyes are getting dryer and more painful. So is my mouth also using Ximelts as well.
You sound like you are really suffering. Maybe you need a medication review by a really good (knows what they are doing) rheumatologist. I would definitely push for it. I have found pilocarpine good for dryness everywhere (it increases your secretions) it's just a difficult drug because it causes diarrhea and wind. I am supposed to take four a day but only manage one at best. I take it with food and water and this helps a bit. Without it my eyes are in much more pain even at the small dose I take. Maybe you are on it anyway or tried it. One I get mouth and tongue sores there isn't much helps but I have gone for treatments that contain lidocaine, at least it numbs things for a while and I can eat. I use Anbesol when things are bad but it tastes foul.
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