Anyone experiencing severe dry eyes with lupus? - LUPUS UK


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Anyone experiencing severe dry eyes with lupus?

ladylooking profile image
29 Replies

I started have severe issues with dry eyes a little over a year ago along with dry mouth. A couple of weeks ago I saw my PCP and had her run tests for Sjogren's. My results were negative for Sjogren's but she said my bloodwork indicated lupus and I am waiting to see rheumatology. I have also been experiencing a rash on my face. My eyes are terrible. Are any of you experiencing this issue with your eyes? TIA

29 Replies
jasonbelenda profile image

Honey I am my lupus flare ups ,well I have been trying to home treat I would recommend if anything is different call your Dr

ladylooking profile image
ladylooking in reply to jasonbelenda

I have been working with my eye doctor. He has me on prescription drops but they don't really help. I am waiting for my rheum appt. I recently made more dietary changes and started transitioning the the protocol that Dr. Goldner has. My eyes just make everything miserable.

StriatedCaracara profile image

I asked for an eye hospital referral in the end.

Here is a post I did when I first had issues not just with dry eye but also the eye drops

ladylooking profile image

Thank you for your reply. My doctor has me using Xiidra prescription eye drops and PF Systane during the day and the ointment at night before I go to bed. I don't think they make anything stronger than these prescription drops. It is a struggle for sure.

Spanielmadlady profile image

Hi.i have prescribed hyloforte eyedrops but I also find eye masks help.warmed up it helps dry eyes chilled helps itchy eyes x

ladylooking profile image
ladylooking in reply to Spanielmadlady

Oh ok, my doctor said I tested negative for that. I have been doing some hydrotherapy on my eyes and it gives them a little relief.

Spanielmadlady profile image
Spanielmadlady in reply to ladylooking

My rheumy told me I had it.the gel masks that can go in the microwave or freezer are what I use. X

Tiggywoos profile image
Tiggywoos in reply to Spanielmadlady

love the eye mask 😊. I think it works way better than drops but sadly can’t carry microwave round with me 😉xx

Spanielmadlady profile image
Spanielmadlady in reply to Tiggywoos

Someone needs to make a pocket microwave just for our eyemasks 🤣😚 xx

Chris21 profile image
Chris21 in reply to Spanielmadlady

I wonder if the hand warmers than have a small disc in, would work like an eye mask 🤔😆

Spanielmadlady profile image
Spanielmadlady in reply to Chris21

Now there's a thought 😁

Tiggywoos profile image
Tiggywoos in reply to Spanielmadlady


ancoats23 profile image

Yes - I blamed it on screen work. I have used over the counter eye drops including liquid tears. I have also started using computer glasses. And limiting my screen time - listening to podcasts and books.

ladylooking profile image
ladylooking in reply to ancoats23

I understand. I have to work on the computer at my job all the time. I put the filters and everything on it and take as many breaks away from it as I possibly can.

Lizard28 profile image

My Rheumy just kept ignoring my pleas for help with my eyes. Eventually I wore her down (6 years later) and she referred me to an ophthalmologist at the hospital. It took over six months to get the appointment. He did the Schirmer test, my left eye had practically no tears in it. I had the punctual plugs put it. They worked instantly for me. I don’t get as many eye infections now. I still use Xailin Night gel at night but for me this treatment worked. I get them checked every six months at the hospital. The drops before this treatment only lasted two minutes. I tried everything, masks etc.

ladylooking profile image
ladylooking in reply to Lizard28

I have an appt next month to get the plugs in my eyes. And my rheum appt is in May.

Lizard28 profile image
Lizard28 in reply to ladylooking

I am so pleased for you, hope they give you the same comfort as I’ve had with them.

SufferingMike21 profile image

Hi I've suffered from dry eyes red and sore etc,was prescribed different eye drops and lubricating drops. I saw a different eye doctor who put plugs into my tear ducts which have made a great improvement..

I just use lubricating drops as required now ..

Hope this gives you another option


ladylooking profile image
ladylooking in reply to SufferingMike21

I have an appt in a couple of weeks to have the plugs put in my eyes. That put the temp ones in but they came out the same day so I hope these stay in and help.

SufferingMike21 profile image
SufferingMike21 in reply to ladylooking

Hi yes I was sceptical if plugs would stay in but mine have so hopefully yours will. My eyes were so red and sore etc evan got sent to morefields eye hospital. Since plugs in I have noticed a big difference so fingers crossed for you.

I also have lupus sle,Raynauds, sjogrens..

Rgds Mike

dg70 profile image

Often Lupus and Sjogrens go hand in hand. I have negative blood tests for Sjogrens but positive lupus. I was diagnosed Sjogrens because of the dry eye mouth and nose, dry throat, teeth loss and down below extremely dry and painful and fatigue. From the symptoms I was diagnosed. Negative blood tests are really not unusual for this. It's finding that Rhuemy that does not go on blood tests alone but looks at the symptoms otherwise you can be missed and not get the help and its important as Sjogrens affects your internal organs with kidney stones dry throat, choking and coughing, lung issues and so on. Plus you get medication to produce secretions where you have none. I happened to hit a Sjogrens expert first time which was luck. Hopefully you can find someone to take another look. I had to go private though to get someone to take the initial time with me that was needed.

ladylooking profile image
ladylooking in reply to dg70

Hopefully at my rheum appt next month they will run more extensive tests

Vixen2 profile image

I have RA & Iritis & Glaucoma. (2 serious wye conditions). I have also been getting the most awful dry eyes & dry mouth for the past 5 yrs. I was tested for Sjogren’s. Negative. I’ve found out it’s prob the bloody menopause. (I’m 51). I wake up bloody miserable. Just try n moisten your mouth as much as you can. For as often. Plus i have used the fake tears. The fake saliva. Sug free sweets. It’s so depressing. But i’d rather not go on the hrt patch.

ladylooking profile image
ladylooking in reply to Vixen2

I completely understand. I have been on the HRT since October of last year. All my levels are in normal range but my symptoms haven't gotten any better.

Tykle profile image

I have lupus and Sjogren's and have dry eye problems. I'm prescribed hyloforte and hylonight gel from my GP and ilube from the eye consultant. The combination makes the problem manageable. The most effective I've had was Ikervis (ciclosporine). Hope you find something that suits you.

ladylooking profile image
ladylooking in reply to Tykle

Thank you

Betty909090 profile image

This is actually prescribable by the GP👆☝️❤️

Eye drops for severe dry eyes! Recommended and prescribable:
basketcase54 profile image

I've been having trouble with my eyes itching stinging running all time rash on my bk that itches like hell getting spots in my hair and from one ear to next and my forehead and eye brows is that anything like you ? X

ladylooking profile image

My eyes are extremally dry and hurt because of that.

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