struggling with my eyes: hi all hope all are ok. I... - LUPUS UK

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struggling with my eyes

EG74 profile image
EG74
22 Replies

hi all hope all are ok. I’ve been struggling with my eyes a lot this month, I don’t know if I have Söjgren (sorry I can’t seem to spell it ok) but I bought normal eye drops from the pharmacy ( they only have those ones when I went) but my eyes are so bad and the sun seems to make them worse. I put my eyes over my cup of tea or steam from the kettle and this seems to relieve a bit. What drops can I get from my optician or pharmacy that helps better? Recommendations please? I work full time with computers and numbers so I need help asap as it’s driving me crazy.

Many thanks

Erika

22 Replies
Spanielmadlady profile image
Spanielmadlady

I use hyloforte Eye drops which my gp prescribes but you can buy them.i also wear wrap around sunglasses whenever I'm outside all year.gel eyes masks help too...cold if they are itchy and warm if they are dry.yes I have sjogrens and some of my meds cause photosensitivity of the eyes.hope you get some relief soon x

EG74 profile image
EG74 in reply to Spanielmadlady

Thank you Spanielmadlady

Krazykat26 profile image
Krazykat26

I'll second that..Hyloforte eye drops n I use Xalin night time gel which is prescribed. The cold n hot masks have helped me enormously!! Same with the wraparound shades 😎I have Sjogrens too n I'm finding it extra hard right now.

One other thing ..can u turn down the brightness on your devices? When we're staring at a screen we tend to blink less..just a thought coz I have to do it to my phone n tablet n as you're looking at a screen for much of the time it might help.

I struggled with spelling it and saying it was even worse..n I can't get it right now coz it's got a .. above one of the letters (think it's the O..yes it's the o!! 😹 I couldn't spell my type of lupus for ages n then when I was prescribed hydroxy chloroquine..I spent a lot of my time awake in the middle of the night in pain trying to spell it😹 I didn't have the internet then!! 🌈😽😽Xx

EG74 profile image
EG74 in reply to Krazykat26

Thank you Krazykat26. I’m not sure if I had Sjögrem or not but for so long I struggled with red eyes and this month it gets worse so I think it’s the sun or the screens not sure. I used to wake up as I child with my eyelids glued to each other so maybe it’s the syndrome. Yesterday I spoke with my GP who enquired with my rheumatologist as they prescribed me HCQ since April but I said I didn’t get a letter saying if I have or not lupus and my GP got a letter now and in there it was mentioned they can’t diagnose lupus as I don’t have all the criteria ( had two ANA tests and the other test I can’t remember the name, proteinuria, leucupenia, lymphocitopenia, stiff hands, erythromelalgia). I live in Scotland for 20 years and before that all allergies, medical notes, etc were recorded with my doctors in Bolivia and I could only told my rheumatologist what I remember. Anyway maybe it’s connective tissue disorder, not sure. Both my parents have RA and two of my younger cousins were diagnosed with lupus years ago in America.

Anyway, I don’t have dry nose, I drink enormous amounts of water as I always feel thirsty but I don’t think I have dry mouth. It’s just my eyes just now and arthritis or pain in my bones in my arms and legs even now that it’s hot. Regarding the spelling, it’s hard to spell this one. Even trying to copy it from internet haha 😂

Krazykat26 profile image
Krazykat26 in reply to EG74

When I was first diagnosed with lupus..the blood markers were there for Sjogrens too. However I was seeing a dermatologist and have only seen a rheumy in the last couple of years (I was diagnosed in 2017) I remember my lovely GP saying at the beginning that she doesn't know much about lupus but she can see in my blood results positive anti-RO and anti LA. I didn't go any further with it coz I was trying to get my head around what lupus was. Fast forward a few years n I'm seeing a rheumatologist who has done the schrimer test n told me I have dry eyes and scanty saliva bubbles. That result along with the anti RO n anti LA antibodies means that I have Sjogrens!! Now I'm thinking that I've had Sjogrens since the start!! I recently bought some rapid eyewear over glasses sunglasses which are polarised..I can wear them indoors and still use a screen. Am just thinking something like those might help you. I got them from Amazon for £15 n I recommend them.

I'm glad to hear the Hyloforte drops have given u some relief 💜🌈😽😽xx

KnitSewPurl profile image
KnitSewPurl

I Use hylo forte as well. they are very good . I am on prescription for them . See if you can get your GP to prescribe it or your Rheumatologist. As you don't want it to get worst or cause any inflammation.Yes , I am constantly thirsty as well at the moment drinking like a fish my mouth is so dry with this hot weather. it is ridiculous.

Hope you are able to sort that out asap. xx

EG74 profile image
EG74 in reply to KnitSewPurl

Thank you 🙏

Lizard28 profile image
Lizard28

You should go and see your local optician, the will look at your eyes and possibly prescribe something for you. I have punctual plugs in my eyes which helped my dry eyes immensely. I also have blepharitis which causes red eye which I clean my eyes morning and evening, I was told to use a hot flannel with my ophthalmologist at the hospital, but I bought a solution from boots which I found easier to clean them with a cotton bud .

EG74 profile image
EG74 in reply to Lizard28

Thank you Lizard28. I managed to make an appointment for Monday with my optician and yesterday I bough the drops advised by some of the people who replied. I bought it over the phone and my friend went to collect it for me and once I put it on both eyes it makes such a difference. The other drops I bought were not helping at all even put it lots of drops. The hylo forte helped me to relieve some of the redness and I can see better now so hope it helps me during my work. I think I’ll work with the blinds down today as it’s another hot day

Lizard28 profile image
Lizard28 in reply to EG74

There is nothing worse than sore eyes, I’ve had years of waiting for an ophthalmologist appointment and complaining to my Rheumy consultant to refer me. Dry eyes and red eyes are so painful. I’m glad the drops are helping you. Best wishes.

KnitSewPurl profile image
KnitSewPurl

fab that is great 👍👌

Peacor profile image
Peacor

Hi EG74, sorry to hear about your situation with your eyes. I recently had issues with my eyes and started having problems particularly with working on the computer or using devices. I also started struggling with seeing and reading. So i decided to visit the optician and they thoroughly examined my eyes and my eye test etc results were fine. They however told me it was due to muscle weakness around my eyes and constant use of screens and devices that was causing the strain throughout the day (as i am usually ok first thing in the morning). I was also given prescription for screen eye glasses that have been using for sometime now and also for easy reading and it does reduce muscle strain. Hope they soon find out what it's causing it and get it sorted sooner.

dg70 profile image
dg70

I work on and off each day on computer. I have computer only glasses which are different from my varifocal prescription, that helps. Hylo tears (available on prescription but cost the same as buying yourself unless you are on free prescriptions then its worth it) are good but must be preservative free followed by actimist spray once you have put the drops in as the oil keeps the tears in. A hot eye mask once or twice a day for 10 minutes minimum which you can get cheap usb ones on amazon. Wearing uva/uvb sunglasses that are wraparound so they don't let wind in either when you're outside ( I got motorcycle glasses from Amazon again with foam inside to seal the gap between your eyes and glasses, non prescription about £10).

You really need a diagnosis though. Can you get a referral to an Opthalmologist? Be prepared that sometimes even they are not that good at diagnosing this. Ask for one with Sjogrens experience. I go to a specialist eye clinic once a year and you get a more thorough and comprehensive work over. You need them or a Rheumatologist to do a Schirmer's test to see the quantity of tears you are producing. My pain is much less since keeping up with this regime and also having IPL laser on my meibomium glands which releases stodgy oil back to runny again which keeps the tears in my eyes much better. Make sure you get a Ophthalmologist referral or Rheumatologist as I tried for years to get a diagnosis and no optician or ophthalmologist diagnosed it until I had a huge cyst grow on my eyeball because they were so dry. Then it couldn't be missed. It is possible to be in much less pain dulling to just soreness if you keep up a good eye regime. It just means forking out a bit more cash in the initial stages unfortunately.

EG74 profile image
EG74 in reply to dg70

Thank you yes I’ll do all of that and unfortunately pay it myself. I’m not sure when it will be my rheumatologist review, initially they say after 6 months of taking HCQ but then I think it will be after another 6 months. I did say to my rheumatologist I have dried eyes but I wasn’t sure if it’s then that do the referrals or my Gp or the optician

dg70 profile image
dg70 in reply to EG74

You need an ophthalmologist with good scanning equipment. If it is dry then you can have a baseline assessment and they can see if you have any changes. Should be done before hydroxy so they can have a comparison. My Rheumatoligst gave me a private clinic recommendation so I paid and went there. They said you should be reviewed, paying or not, by an ophthalmologist six months after first taking hydroxy because of the risk of eye damage then every year at the least thereafter. If you can pay and you have a private eye clinic near you, I would recommend it. If not its waiting on NHS where they can't do so much testing. My optician is OK with sjogrens but I knew as much as she did about medication so they can't offer you a lot. My Rheumatologist did the schirmers test on me. The opthalmogist at the eye clinic now does it each year to test tear production. With your work make sure you remember to look away from your screen every half hour or so, close your eyes tight for 20 seconds to try and remoist them. We tend to stare to much looking at a computer. Please if you're on hydroxy get your eyes checked at a hospital or clinic by an ophthalmologist, your eyes need to be monitored. With NHS waiting times being several months I would push your gp or Rheumatologist to apply now for an ophthalmology appointment.

EG74 profile image
EG74 in reply to dg70

I’ll ask my optician to send me to the ophthalmologist. I told her I was going to start HCQ but she said she had the equipment ( she was a new optician working in my optician clinic) the previous optician referred me to see an ophthalmologist during the pandemic as one of my eyes got so sore to any movement and really red and the ophthalmologist that time diagnosed me with ocular myositis after I said I may have lupus because recently had an ANA positive but because it was healing itself he just sent a letter to my rheumatologist but then my rheumatologist didn’t contact me back. This year I went to see another rheumatologist who did new tests and prescribed me HCQ but until now it’s not completely diagnosed as lupus. My eyes are better now that I put the hylo drops but they are still a bit red. Monday I’ll ask the referral to the ophthalmologist and if not I’ll find one privately

dg70 profile image
dg70 in reply to EG74

Good idea. It's a plan. I'm was negative bloods ro/la etc.. except dsdna positive, which since hydroxy is now down to borderline so hydroxy works. Luckily my Rheumatoligst diagnosed from symptoms which were much more sjogrens but she diagnosed lupus too because of positive dsdna. If it was just bloods now then I would be negative for everything, make sure your not just diagnosed on blood alone as its not unusual to come up negative. I'm a year and a half on and the hydroxy has helped the exhaustion a bit and my symptoms are not worse but only a bit better. It's doing something anyway but it took over a year to drop my dsdna level to near normal and see some difference. You can have carbocisteine or pilocarpine too if you have sjogrens. I couldn't get on with carbocisteine but pilocarpine helps me a lot especially dry eyes and mouth. Hope you get to see a specialist soon. Dr Elizabeth Price's talk on you tube for the BSSA is very good on dealing with sjogrens and what to look out for. She's my Rheumatologist so I can say she's good. 👍

EG74 profile image
EG74 in reply to dg70

I live in Edinburgh. I’ll wait until Monday to see my optician and see what happens

dg70 profile image
dg70 in reply to EG74

Good idea. You live in a city so there should be options. I go to the Matrix eye clinic nr. Swindon. If you look on their site it tells you what they offer for dry eye and how much to give you an idea of what to look for and rough price. They even did a CT scan of my eye in the price which is not available in a lot of places. I don't pay as much as that now as the first appointment was to set the baseline on my eyes. They said even microscopic changes from hydroxy in my eyes can be picked up and I can stop the drug before there is any damage I would notice. I figured only one set of eyes and I still work so it's worth it to me to be extra careful. The NHS cannot provide most of what they do which is a shame although in Scotland you may get more?

dg70 profile image
dg70

Oh and Pilocarpine tablets prescribed by the Rheumatologist. You get a hot flush after taking for about 20 mins but they produce secretions that you are no longer producing.

StriatedCaracara profile image
StriatedCaracara

This happened to me last year before I got diagnosed with UCTD. My GP referred me to eye hospital who found a few things. This year things have improved after 6 months on hydroxychloroquine. Eyes bit better..

OldTed60 profile image
OldTed60

It doesn’t matter whether Lupus, Sjogrens or UCTD - Hydroxichloraquine is the gold standard treatment for all and risks of disease affecting us internally and externally are same. Also if you have joint pain with red eye really worth getting RA excluded properly as it’s easier to diagnose and often overlaps with UCTD and Sjögren’s - can cause Scleritis which turns eyes red as the tiny synovial joints or muscles near eyes are inflamed. If both parents have RA it’s worth pushing to see eye clinic dr as well as a good optician as they may treat with additional disease modifier as well as HCQ.

Glad Hyloforte drops are helping. If in Scotland you will hopefully get them free on NHS - especially if diagnosed with Sjogren’s. You always need preservative free. Best of luck - keep pushing - we only get one pair of eyes!

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