Severely dry eyes

[Rain134]

Hi I’m hoping for advice from sjorgrens sufferers. My eyes are severely dry - scored 2 in the schirmer test in both eyes 4 years ago. They feel worse now, I struggle to sleep as they feel so dry.
rheumatology discharged me at the time without diagnosis, opticians only advise hycosan extra, which doesn’t help as much now they feel even drier.
What does everyone else use to alleviate this? Thanks

I am currently using hylo night eye ointment and I have used hycosan night in the past, both have worked well. It is a gel that you put in your eyes before you go to bed at night, it provides immediate relief. My optician likened it to smeering vasoline in your eyes and that is an accurate description. I can't see once I have it in (but I can't see very much once I have taken my contact lenses out anyway) and I do have to wipe around my eyes and my eye lids with a soft flannel in the morning to get rid of any overspill that is still lingering.

My DH has dry and irritated eyes (mostly due to uveitis and the meds used to treat it).
his consultant said part of the issue is blocked ducts round the eyes so he’s got a cleansing routine with quite hot water and cotton wool pads and optase wipes He also uses several different hyclosan formulations at different times of day and night (he’s got 5 types at the moment, I think it’s the Intense he finds best) so it may be worth you experimenting with them. He’s also got an Optase spray, comfort dry eyes I think.

The Hycosan night gel lasts me well into the morning then I use Hycosan drops - I think there’s a version called “ultra” or “extra” or something. Make sure that whatever drops you use are preservative free. Preservative makes my eyes worse.

Im struggling at the moment. Im on hycosan intense (btw can you get it on prescription?) And bought an electric heated eyemask. Im coping sort of. Doctors seem massively unbothered.

Yes you can get it on prescription.
have you tried cleaning your eyelids twice a day with Blephasol?

I use my drops roughly every hour. I have a timer on my phone to remind me.

I was referred to the hospital by my optician because my dry eyes had begun to cause damage to my corneas.
I was allergic to what was initially prescribed and after months of treatment I ended up on Thealoz duo eye drops at least 6 times a day and hylo night ointment.
My GP is happy to prescribes both on a monthly basis, although I now no longer request the ointment as I found using the drops before bed worked equally well and didn’t leave me with sticky eyes in the morning.
I use the drops at least every two hours in the day, before bed and if I wake and haven’t had any problems since.

Have you tried Hycosan Night ointment? It’s been a game changer for my eyes.

Mumsnet is great. Within a couple of hours, I’ve got more suggestions and advise than I’ve had in the last 4 years.
Hycosan night and blephasol is ordered, fingers crossed it gives me some relief.
Thanks all

It is is t it! Hope things improve for you - copious drops regularly at frequent intervals should so thr trick along with the Blephasol, the night gel and the heated eye mask.
In always have at least a couple of bottles of drops on the go - one in my hand bag, one in my laptop bag, one in the living room etc so I’m never without them. Checking I have my drops with me is now as much of a habit as checking I have my phone/wallet/keys.

It is is t it! Hope things improve for you - copious drops regularly at frequent intervals should so thr trick along with the Blephasol, the night gel and the heated eye mask.
In always have at least a couple of bottles of drops on the go - one in my hand bag, one in my laptop bag, one in the living room etc so I’m never without them. Checking I have my drops with me is now as much of a habit as checking I have my phone/wallet/keys.

It is is t it! Hope things improve for you - copious drops regularly at frequent intervals should so thr trick along with the Blephasol, the night gel and the heated eye mask.
In always have at least a couple of bottles of drops on the go - one in my hand bag, one in my laptop bag, one in the living room etc so I’m never without them. Checking I have my drops with me is now as much of a habit as checking I have my phone/wallet/keys.

It is is t it! Hope things improve for you - copious drops regularly at frequent intervals should so thr trick along with the Blephasol, the night gel and the heated eye mask.
In always have at least a couple of bottles of drops on the go - one in my hand bag, one in my laptop bag, one in the living room etc so I’m never without them. Checking I have my drops with me is now as much of a habit as checking I have my phone/wallet/keys.

It is is t it! Hope things improve for you - copious drops regularly at frequent intervals should so thr trick along with the Blephasol, the night gel and the heated eye mask.
In always have at least a couple of bottles of drops on the go - one in my hand bag, one in my laptop bag, one in the living room etc so I’m never without them. Checking I have my drops with me is now as much of a habit as checking I have my phone/wallet/keys.

Bloody hell! What happened there? I’m on a train so maybe that’s it 🤔

I use the gel and these wipes (will post a pic) from Amazon. My eyelids used to swell up regularly but it’s not happened once since I used these. I use one wipe for both eyes morning and night. Game changer!! I’ve tried a few (including the boots version but these are definitely the best).

During a bad flare I spend roughly two hours a day with my Eye Dr heated mask on, drops every hour, cleansing at least 4 times a day. Ophthalmologist also recommended me a cod liver oil to be taken that she found helpful for her own blepharitis.

Turns out I'm also allergic to loads of eye drops. Have to use systane only.

My eyes are so fucking sore atm, the whole eye sockets are painful and I've developed eyebags so good I put the oldies on the town bus today to shame. Most annoyingly is the intense nostril dryness, I would love a cold right now. Can't sleep without reading so have to blink a million times to somewhat clear the night gel enough to be able to see.

Hello my (dry eyed) people! It’s absolutely awful, I hate putting drops in like Rachel Green does, but the relief that comes! I use an easy dropper and the overnight, but the ‘clicking’ I can get when I blink if they’re dry is grim! I love the spray you can get but think limited in use?

I've got serverely dry eyes, allergic conjunctivitis and am also allergic to an ingredient that's in most eye drops. After years of fighting with my GP, I'm now under hospital care for both eyes and dermatology (facial eczema). I'm on ciclosporin eyedrops 2x daily, thealoz duo anywhere from every half hour to a few times a day depending on how dry they are, zaditen allergy eye drops 2x a day and now ciclosporin tablets to suppress my immune system.
ive had to fight every step of the way so my message is don't give up! Push for referrals if you need them. And use vasiline around your eyes overnight.

I just wanted to come on and give my sympathy as I don’t think people get just how awful and debilitating dry eyes and blepharitis can be.

I have an autoimmune disease and the year running up to diagnosis was horrendous with my eyes, it made me so miserable. Probably like most of you I tried everything going. It made me tired and like a pp my poor corneas were so inflamed all the time and lead to infection. Eventually I found some gel and drops that worked and Blephasol was a life saver but I know how individual treatment is for everyone. Thank god It all improved once the autoimmune was treated but I still use Blephasol daily.

I hope you get some relief soon OP and everyone else struggling.

I just wanted to come on and give my sympathy as I don’t think people get just how awful and debilitating dry eyes and blepharitis can be.

I have an autoimmune disease and the year running up to diagnosis was horrendous with my eyes, it made me so miserable. Probably like most of you I tried everything going. It made me tired and like a pp my poor corneas were so inflamed all the time and lead to infection. Eventually I found some gel and drops that worked and Blephasol was a life saver but I know how individual treatment is for everyone. Thank god It all improved once the autoimmune was treated but I still use Blephasol daily.

I hope you get some relief soon OP and everyone else struggling.

I just wanted to come on and add some info from the experience I’ve had with dry eye

Early dec I was told my spec savers I had blocked eye glands and my eyes were sore and gritty, they advised to use hycosan which I’ve done religiously. I also use a heatpack and eye lid wipes.
I went to a ophthalmologist app yesterday and she advised against hycosan and advised to try Thealoz drops and gel, I’ve since changed after her advice so I can let you know how I get on
you can use it as often as you like and also just to add as I read someone mentioned systane as I read those can be good and she also advised against that saying they had preservatives in and need to have one without preservatives

it really is such a horrid thing to have 😩I skipped GP and went straight to optician who referred me to an eye clinic so this is another route if a GP won’t

I also have Graves’ disease so waiting on a MRI of my orbits too