I have just been to the optician and ... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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I have just been to the optician and been told I have dry eyes. She recommended drops, but what are the best drops to use?

RosemerryVenet profile image
18 Replies

I also have very dry nostrils (inside) - is this connected to the scleroderma? Could the dry eyes be why my eyes always feel tired and gritty?

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RosemerryVenet profile image
RosemerryVenet
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18 Replies
Vickisu profile image
Vickisu

have you been checked for Sjogren's syndrome? I have that as well as Raynauds...dry eyes and mouth are chief suspects! as well as sore joints, etc.

RosemerryVenet profile image
RosemerryVenet

No I haven't. Not sure when my next rheumatology appt is, and I don't think my GP will know what I am talking about!! If I do have it, what can be done to ease the symptom?. I feel so tired all the time.

RosemerryVenet profile image
RosemerryVenet

Any advice on what drops to use? Or should I just ask the chemist? Or my GP?

Anteater profile image
Anteater

Hi Rosemerry,

Sounds like you may have Sjogrens Syndrome - do you also have a dry mouth? I use HYLO Tear drops during the day and Lucri Lube at night. You can get these on Prescription and your GP should know what you are on about.

Unfortunately, it is another auto immune condition and yes it is why your eyes feel tired and gritty. I am under Moorfields eye hospital and Eastman Dental Hospital for mine although my Rheumy is aware .... I have recently had temporary plugs put into the tearducts - These help by keeping the tears from draining away so in turn keeps the eye moist.

I also have various sprays etc to try and keep my mouth moist - if you have a dry mouth seek dental help i.e. regular dental checkups and good hygiene is essential. I also drinks loads of water .....

RosemerryVenet profile image
RosemerryVenet

I don't seem to have a dry mouth, though I do drink a lot and keep a drink by my bed at night as I have to keep having "quick sips". I will go to the GP to see about eye drops as I have free prescriptions anyway. Thanks everyone for your help and support.

LynnCox profile image
LynnCox

I have limited cutaneous systemic scleroderma with secondary Raynaud's and also have auto-immune underactive thyroid. At my first appoinment with my rheumatologist they carried out the schirmer test for dry eyes and as a result I was prescribed Hypromellose eye drops and have used them since April last year. Despite this I have not been diagnosed with Sjogrens. Frustratingly you have to remember to start a new bottle every 28 days, even if there is plenty in the old one.

Kentish_Man profile image
Kentish_Man

I have dry eyes and a dry mouth. I use both Hypromellose Eye Drops & Viscotears (This is a gel. It will leave your eyes a bit blurry for a while and I use it at night before I go to sleep), For my dry mouth, I mentioned it to my dentist and he gave me a mouth wash especially for people who suffer from dry mouth. It is called Biotene. It also works quite well. Although I get mine from the dentist you should be able to get it from a chemist as well. I also use their toothpaste when my mouth is really dry.

Hope that is useful for you.

lifeforce profile image
lifeforce

Systane lubricating drops are good also my eye dr. told me to take 1 flaxseed capsule 2 times a day as well. I also have dry eyes, dry skin, dry nostrils,dry mouth and scleroderma. Good luck!!

RosemerryVenet profile image
RosemerryVenet

Thank you everyone.

JCB13 profile image
JCB13

I too use Hypromellose eye drops. The optician suggested them to my GP. Find my eyes are worse in cold, foggy weather. I have a mixed connective tissue disorder. Dry eyes are also a side effect of the immune suppressants I have to take. I'd ask your GP.

Daisy23 profile image
Daisy23

Hi. I'm new to this site so I think I'm coming late to your question, but just in case it's helpful...

I've had dry eyes for years but it was only when I got my recent diagnosis of scleroderma (CREST) that the team suggested it could be part of the condition. I also have a dry mouth and dry skin.

I use Optive eye drops, which were recommended by my optician and are really excellent. If I need something heavier duty at night, I use Viscotears or (even heavier duty!) Lacrilube. Good luck with finding the right ones for you.

RosemerryVenet profile image
RosemerryVenet

Viscotears is the one I was given by the gp. It's good, but can't use it if I have eye make up on - what price vanity!!

MikefromsouthNZ profile image
MikefromsouthNZ

Hi, I have Secondary Raynaud's & Sjogren's syndrome and get extremely dry "sandy" eyes.. My Dr sent me to my optometrist and she gave me Poly Gel eye lubrication drops. They help but I also use an eye shower to wash my eyelids frequently.. She also advised me to wear eye goggles on windy days and especially in sandy or dusty environments to protect my eyes too.. A hot damp wash-cloth over my eyes for a couple of minutes relieves my eyes well, and helps best just before bedtime..

My mouth gets dry as well but I keep a water bottle with me and take sips of water 10 to 15 minutes to help.. My dentist gives me mouth gel, a slimy gel that I put on the sides of my mouths and always be extra diligent with cleaning my teeth after eating. I find when I get a cold it makes my system extra dry, so try to keep yourself well.. Drink lots as it helps to re-hydrate your system and especially if you are unwell..

I also use a lip moisturiser called Paw-Paw cream or zink is a great lip and skin healer too.. A good nasal spray will help to keep your nostrils moist, and tell your pharmacist you have Sjogren's as they can help you with better products, than you get in supermarkets.. Moist and humid environments can help with dry skin but a good body moisturiser is good too..

It's a whole new World having Sjogren's as you need to educate yourself on what's good for your situation, but keep asking questions to get others opinion and helpful support too..

Best of luck and remember we are here to help you as well..

RosemerryVenet profile image
RosemerryVenet

Thanks. Haven't been diagnosed with Sjorgren's. Apart from seeing Rheumatologist to confirm. anyone else useful?

michele27 profile image
michele27

I also have Scleroderma and my eyes and mouth are also very dry. The doctor has given me Celluvisc eye drops, I use them twice per day and they have helped my eyes. I drink plenty of water through the day, not only is pure water good for everthing it helps with the dry mouth. I hope you find this helpful.

MFC911 profile image
MFC911

Hi,

Sounds like you have Sjourgrens syndrome.

Yes it is connected to both Raynauds & Scleroderma.

In my opinion best thing to use is called "Visco tears". Comes in small single use ampules to keep everything sterile. Speak to your GP.

Get the Sjourgrens confirmed and the visco tears will be prescribed for you. There is another product that may be of use to you; namely "Glandosane" it is a synthetic saliva. Will help you. For Heavens sake ask for the Lemon flavour. The mint is utterly vial.

Good luck. Mark.

lennyplus4 profile image
lennyplus4

I have tried several brands but honestly they all work the same for me. Some, I hear they had to try several ones until they found the right one. I have been diagnosed with Sjögren's syndrome. My eyes are worse when I wear my contacts, which now I rarely wear.

Inamoment profile image
Inamoment

I have this! No surprise, i have everything. I was told during a hospital eye appointment. I was told to massage my eyelids with warm water and use Artificial Tears eyedrops. I have completely ignored this advice but need to start doing it. It has got very much worse, particularly in the evenings. It is called Blen* something

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