Hello everyone, I was diagnosed with lupus about 8 years ago and moved a couple of years ago where I now attend a GP surgery which is really down to the luck of the draw - ie if I see one Dr he thinks I'm a hypochondriac and if I see the other she really tries to help - even calling the MIN hospital to get advice - outcome of which is my advice to to make sure to are being seen by some one who gives a da_ _. Anyway thats not the reason to send this - periodically I have awful eye problems, they are really dry and painful and can last from a couple of days to a week - as per this episode. I am prescribed all the normal eye drops and take Omega 7 which was recommended to me by a fellow sufferer (I am also on the normal stuff such as Plenquinil and Methatraxate. Does anyone have any other tips to help please. After this last episode I look like I have aged by 10 years - clearly not the crux of the problem but have felt awful for the week, to end up looking haggard is just adding insult to injury. Fellow Lupus friends - can anyone give me any help with this one?
GP and eye problems!: Hello everyone, I was... - LUPUS UK
GP and eye problems!
hydroxychloroquine and methotraxate are known to give eye problems, ask you gp to refer you to an ophthalmologist.
or ask your rhuematologist to change your medication.
i have had a lot of lupus flare ups which have affected my eyes, hair and heart, and since i had an incompotent gp(goldborne gp) and rhuematologist(st marys) , who never took my complaints seriously.
it got to the point where i had gotten so sick, that i had decided to call 111, and they sent me an ambulance and i asked them to take me to the ucl hospital, which has a rheumatology dept, when i was admitted into the a&e, the doctors were shocked at my state, they started various treatments and blood test, and after 3 weeks of being in hospital, i was feeling much better.
since i was treated at the ucl hospital it was easier to get my gp to transfer me, and later changed my gp to a different gp aswell.
i still have blury vision, but my lupus symptoms are a lot better. look for local hospitals that have a rhuematology dept, and ask your gp to be transfered there.
Hi Karlitoz, thank you for taking time to reply. My GP is absolutely no help at all and I am really grateful to the Min hospital because I know that they have the expertise to help, but between appointments I am at the mercy of my dreadful GP who frankly has not got a clue about Lupus. I will take you advice and see if I can get a referral. Thank you
in my experience most gp's are clueless on lupus, you could ask your rheumatology dept at the hospital to give you a number for the head nurse or an emergency contact number. basically you just leave the nurse a message, and they get back to you the next day.
My opthomologist inserted a 'bandage contact lens", almost no prescription, in my eye and I had instant relief. Shielded the cornea from whatever was bothering it. Left in overnight, then checked it the next day and put another in for 5 days, checked again and it was almost completely healed. This problem reoccurs from time to time and I go get a bandage lens and in a week I am much better. Done a lot here in Southern California. Lots of dry eye from the desert air. Plus I have lupus and sjrogens.
Hi Zzukke, I think things in the USA are far more progressive than here, I've never heard of a bandage contact lens. I'm pleased you managed to get the help you needed and I will keep your info in mind for the future. Thankfully today things seem to have eased - long may it continue !
Hi Jem
Since you're on Plaquenil you need to have regular eye tests just to make sure there's no damage to your eyes. The optometrist might be very helpful about the dry eye problem which is a recognised feature of lupus and even more of Sjogren's symptoms which often accompanies lupus. Your rheumatologist ought to be able to help you with further treatment or refer you to an ophthalmologist.
There are specialised ointments and such as well as plugs which can often relieve this very unpleasant symptom.
I wouldn't ask to change medicines. Plaquenil or Mepacrine are very important mainstays of treatment - the anti malarials have have so many advantages that even people in remission often stay on them at low doses. If the Plaq and the metho are helping then why change. There are other medicines that might be useful in small doses or for a while to get the disease better controlled and maybe improve the dry eyes.
It awful that a GP is so ignorant as to dismiss any patgient. Perhaps you can find the strength to gently ask this doctor if he doubts the diagnosis, or why he dismisses your concerns. Write down how Lupus has affected your life and just ve him that statement copying to practice manager and senior partner. Don't feel like a hypochondriac - it's a very rare psychological condition. You are entitled to have confidence in your doctors and not to be made to feel worse, by them or anybody else.
Good Luck
Hello Hermione, thank you very much for you really wise words. I can't believe that this wretched disease has knocked my self confidence so much. Under normal circumstances I would find it really easy to be more assertive, but over the years I think that Lupus chips away at you. I am not going to be made to feel like this, so thank you for your support and watch this space!
I have to wear wraparound tinted glasses at all times as light or slight breeze and that's it Vic painful and dry.Have the usual day drops and night gel but Barnclown let me know about the eye bag,microwavesble eyemask,that is available on prescription and that helps more than I ever expected.Got it through GP
Hello Littleeffie, that sounds interesting. I am keen to try anything and everything. Ironically, tonight I feel absolutely fine - but then thats Lupus for you isn't it. Prior to it kicking off again I will investigate the eye bag option . Thank you once again.
Have you been diagnosed with Sjogren's? Are you under the care of a rheumatologist? Dry eye problems is common with lupus and Sjogren's. There are specific tests for Sjogren's (eye tests and blood tests). You can see an optometrist to have a Schirmer's test, also they can check your corneas for damage (which causes pain), and perform a retinal scan to check for damage from hydroxychloroquine. When I have a flare up of dryness I find lying down with a cold or warm compress over my else helps, and using Hylo Gel drops.
Hi Bebe, I think you are right in that I need to be in front of the right people. I am treated by a rheumatologist at the MIN in Bath - great hospital, shame about my own GP. I feel fine tonight but this keeps coming and going and perhaps it is Sjorgren's. I will keep this in mind for my next appointment.
Hi JEM23, You don't need a referral to see an optometrist, so If you see one prior to to your next appointment you can go with some 'ammunition' ready - ie: test results showing the degree of your dry eye issues - and they might finally take you seriously! Also if they find something more serious I think they can refer you to an opthamologist.
Hi you are right and that makes sense. My GP actually did a test (orange dye in my eyes) and told me my eyes weren't dry! I need to be front of the right people I think.
Yes, I agree! Your GP seems unsympathetic. Also there are a few other tests that should be done
nhs.uk/Conditions/Dry-eye-s...
Good luck!
Hi it could SS it's common if you have Lupus, I have Episcleritis which flares a lot but you need to go to an eye hospital to have that confirmed. Short term relief the best eye drops for comfort are Hyco San Extra from the chemist or optrition sorry can't spell this morning, I have tried all sorts so far these are the best. Hope you get some relief.
Hi Gillyg, I have used the Hyco San Extra and agree that they are good, but I'm afraid they are not having an impact at the moment. The specialist nurse at the hospital recommended Hylo Tear which had an immediate impact - so I can definately recommend them. I also take Omega 7 which helps. Thanks for your response and fingers crossed it has gone for the moment.
Hi Jem where do you get Hylo Tear from would like to give it a go. Hope you improve. X
My GP gave me a prescription but to be honest it looks like something you should be able to get over the counter. If you are in the UK I would speak to your pharmacist. Hope this helps you because it absolutely did for me x
warm (not hot) compress on your eye morning and night. Avoid air conditioning or fans, if possible keep room humid so eyes dont dry out. Sunglassses are a must. Sometimes I even wear mine while shopping as the lights and air conditioning really dries mine out. There is a gel you can put on eyes at night as well. Im in Australia so not sure if we have same medications available.
It is really horrible having dry eye. I totally understand where you are coming from and sympathise with you.
Take care xx
Thanks ever so much spottycheek (hopefully this is not your real name lol). In a funny way it is really good to hear that other people know how this feels. I agree about the sunglasses and given that I am in the UK there is not much call for air conditioning........... Thanks again and I can recommend Hylo Tear which the specialist nurse at the hospital recommended.
Hi sorry to hear of your problems. Your eye problems could be sjogrens. You should really be soon by ophthalmologist. Systane eye drops for the day and lacrilube ointment for the night. If you are on steroids there could be some inflamation in that case you may need some mild steroid drops to control this. GP's don't know much about eyes either. Hope this helps. Xx
Many thanks for your response. I dont know much about sjorgrens but it seems that these things go hand in hand. I am going to keep a log of my symptoms and make sure I share it at my next hospital appointment. Thank you again xx
Do NOT neglect your eyes. Even apply every half hour to get to improve. I have the. Same problem. I have found 1 per cent Celuvisc during the day and then at bed time I apply Lumecare gel - I have found the Lumecare soothing and much better than the usual grunge they give you at night time. I didn't realise I should have applied the drops more often and ended up with abrasions on the cornea. Would not like the experience repeated! I find reading a lot tends to dry my eyes. Hope this helps.
Hi Ieat, Thank you for your recommendations, I am using lots of eye compounds but the specialist nurse recommended Hylo Tear and to be honest it is very good as it seems to give a longer term relief than the other things I have used. I am scared to death that this is going to affect my sight as my physical eye sight seems to be deteriorating aswell. I think all the responses I have received has just made me realise that I cannot ignore this. So thank you.
Great discussion, JM23!
Here is my dry eyes story:
For many years before my infant onset lupus was finally recognised in my 50s, i'd been living with hyper reactive, sore dry scratchy eyes + red periorbital tissues with flaring oedema + eyeball infections causing pus to collect in lower lids ugh. My then optometrist had told me to try the warm wet flannel eye compress method, but that caused my periorbital rashes to flare...and the flannel cooled down too fast. Meanwhile I made do with that OTC stuff you spray on the eyelids
In 2011 when my brilliant rheumatologist recognised my version of lupus and started treatment, at first she called my multisystem dryness sicca...and prescribed lacrilube nightime gel for my dry eyes...which I hated: it's so gooey & sticky & smeared my vision.
Before long, my sicca eye symptoms worsened, so my fav GP referred me to our local NHS hospital eye clinic where I saw a brilliant opthalmologist expert in immune dysfunction patients. he diagnosed what I now know is a fairly typical set of conditions:
Abacterial blepharitis
Meibomian gland dysfunction
punctate keratoconjunctivitis sicca
And he ordered me to be monitored annually re both the dryness and side effects of my lupus meds.
He said lacrilube was his least favourite night time gel & prescribed:
artelac night time gel
Hylo tears sodium hyaluronate drops
MGD Rx eye bag treatments (these wonderful EyeBags are available on amazon & in most pharmacies)
Antiinflammation diet with high dose omega & D3 supplements
this regime does make all the diff to me...artelac is MUCH MUCH better than lacrilube. As the years have passed, I've found that i do have to stick rigourously to this treatment plan...and even then my symptoms continue although damped down enough to mean i feel more at ease with my version of what we now know is sero neg sjogrens dry eyes
Last year, my metabolic bone unit rheumatologist suggested a trial of pilocarpine drops, but my lupus clinic chief thinks pilocarpine would badly effect my already compromised autonomic system (a version of PoTS)
Also last year I found a brilliant optometrist with a special interest in immune dysfunction patients and bang up to date testing gear including retina scanning equipment etc. His lenses are the best prescription I've ever had. His scrutiny makes me feel my eyes & vision are extra carefully monitored. I see him free because I'm over 60, but I pay for the scanning & of course the lenses etc too
Alas for me, that brilliant NHS opthalmologist is now at moorefields, but I continue to be seen annually by opthalmologist at my local NHS hospital eye clinic. last year, the consultant prescribed the stronger hylo forte drops as well....I use these on waking, and then I use the weaker hylo tears drops during the day.
All in all my sjogrens dry eye issues are well managed & monitored...and my 62 year old eyes are generally responding well to treatment...but, as I mentioned earlier, I have to be v conscientious about it all...the dryness is certainly not lessening
Hope something in there is useful
🍀🍀🍀🍀 coco
Hi Barnclown, sorry for the delay in coming back to you and thank you so much for your response. It feels like the only people who can offer good advice are those who have previously gone through similar symptoms, and it is slowly dawning on me that the appointments I have with my GP are not helping at all.
Since last typing I have now developed (again) one of my other regular problems which is a really sore mouth (both inside and out). I have some cream which my GP prescribed but it isn't touching the symptoms but at the moment I have swollen lips (looking really attractive again lol) - have you had any experience with this?
As always any advice is gratefully received as I'm starting to think that there is no end to this grotty disease.
Jane
Hi. I have troubles with my eyes too. Very dry and yes painful too. Mouth dry as well. All of that seems better when I drink plenty of water. As in a couple liters a day. Omega 3 is great too...but at a good dose, up to 3000 mg a day. Hope it helps.
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