Eye clinic

[Vbutton]

Hi all just wondering how many of you have needed involvement from the ophthalmology clinics, I've been put on 4 different eye drops/gels. Eyes very stingy at the moment!

[Barnclown]

Hello Vbutton

Which of your medics has prescribed these various types of drop? Am guessing it's your gp?

How long have your eyes been stingy?

If this symptom has been going on for, say, months/years, and first line treatment with drops has proven ineffective then my experience if proof that you can request referral to NHS ophthalmology (eye clinic).

I struggled with immune dysfunction-related eye signs & symptoms for decades due to infant onset lupus & early onset sjogrens before rheumatology finally recovered my diagnosis 6 years ago and started mf on orescription nighttime eye gel. This barely helped manage my eye issues, so 2 years later I finally requested referral to eye clinic. I was v lucky yo see an immune patient expert who put me on a first line prescription combined therapy treatment plan, which did help quite a lot. I was reviewed annually in clinic. Last summer the cornea expert added daily immunosuppressant eye drops to my treatment plan because his examination proved the inflammation in my cornea remained active enough to make me at risk of ulceration. 6 months on, I'm doing much better and feeling very glad I got in with my eye clinic.

Hope something in there is useful

🍀🍀🍀🍀 coco

[Vbutton in reply to Barnclown]

Hi no they've been prescribed by the ophthalmologist. For ineffective tear ducts extremely dry eyes and an infection. I have also been prescribed daily immunosuppressant drops to prevent further deterioration.

[Barnclown in reply to Vbutton]

Are yours ciclosporin drops (my make of ciclopsporin drops ikervis...I take 1 drop per eye in the evening)?

My eye clinic cornea specialist says that at our next appt (in march) he'll decide whether I need punctal plugs inserted. My understanding is that I'll continue all the meds in my current treatment plan even if plugs are inserted. My big question will be: as I'm highly at risk of infection due to early onset (prior to immunosuppression) hypogammaglobulinaemia & lymphopenia, aren't punctal plugs likely to mean even higher infection risk? And if the answer is yes, how will we manage any infections!

This eye stuff is no fun 😉

[Vbutton in reply to Barnclown]

Yep irkens, prednisolone drops, antibacterial drops and lubricant drops. Punctual plugs do increase risk of infection which is why they are trying all this first. Also I don't want plugs that sounds scary!

[Barnclown in reply to Vbutton]

😉 Me too....

Well, it's good to meet you...I've been here for years, but so far haven't met up with anyone given treatment as similar to mine as yours is...if you don't mind telling me: how old are you? I'm 63. Are you diagnosed with lupus & sjogrens?

[Vbutton]

I'm 27 and yes lupus and likely skrogen's but unconfirmed.i didn't even know eye involvement would be an issue.

[sunshine16]

I am under the care of an ophthalmologist and I use Hy lo forte eye drops and blephasol

[Vbutton in reply to sunshine16]

What is blephasol?

[sunshine16 in reply to Vbutton]

It is a lotion that I clean my eyelids it is good for blepharitis

[Vbutton in reply to sunshine16]

Oh okay. Is blepharotis common with people with lupus do you know?

[Barnclown in reply to Vbutton]

Yes blepharitis is common with lupus & sjogrens patients. My blepharitis is responding well to my eye clinic combined therapy treatment plan:

Hyloforte daytime drops

Artefacts nighttime gel

MGD Rx eye bag treatments

Ikervis ciclopsprin eye drops 1 each eye before bed

I get my MGD Rx eye bags from amazon...these improve my meibomisn gland function, which helps damp down my blepharitis:

amazon.co.uk/MGDRx-Eye-Bag-...

[Vbutton in reply to Barnclown]

Hi barnclown. Yes basically the same as me except I'm on prednisolone drops and not hypocrite. My ophthalmology clinics spec shop sells those eye bags they are great!

[Barnclown in reply to Vbutton]

👍👍👍👍

Hmmm...my consultant decided to try ciclosporine ikervis drops before prednisolone drops

I'll have to google hypocrite (not heard of this for eyes 😉)

I just ordered a small box of blephasol wipes..to try them out in case they can help even more alongside my eye bag treatments

[sunshine16 in reply to Vbutton]

Coco has answered well😊

[Stephanietee]

I have very dry eyes due to RA and possibly sjorgrens although I have never had a proper diagnosis. I use hyloforte, celluvisc 1% and lacrilube and predsoln twice a week unless I get a flare when I have to increase it. I saw a wonderful guy a couple of times h at the chesterfield eye clinic but then he cancelled his last clinic and I have found it increasingly difficult to get an appointment again and the one I have got won't be with him. I have a lot of complicated health issues, heart and constant dizziness and I feel I am constantly fighting a loosing battle with the health service.

Blephasol and blephagel are solutions to clean your eyelids. Very good.

Regards,

Stephanietee

[Vbutton in reply to Stephanietee]

Hi Stephanie I used hyloforte once and had a bad reaction I'm pleased it's working for you. That's a nightmare when your doctors change. I had a horrible experience with an old rheumatologist. I'd had a great one and when he left a lady took over who was awful. Fortunately I have another great rheumatologist now and am very grateful. I found that my ophthalmologist just did exactly what my rheumatologist suggested to him.

[Giraffe1970]

I have been taking the supplement EVOA. Without doubt, after several weeks, my eye dryness is much better. I also take Restasis (horribly expensive-Walgreens least expensive). Both taken together have definitely helped.

[IEAT]

Keep applying gel/ ointment regularly day and night. Lumecare is soothing but if u. need stronger stuff as well, I like 1pc Celuvisc. I apply the Celuvisc just before bed time, followed about 30 mins. later by either Lumecare or Atelac night time gel. Do not neglect your eyes. I once had a horrible experience when I could not tolerate any light on one eye - I had abrasions on the cornea. Would not want to repeat it! I also find the Lumecare soothing first thing in the morning. Helps my eyes to open.

[IEAT]

By the way I had the plugs. They were useless and fell out after a short time. They are not difficult or painful to have inserted.

[nonny]

I have Lupus and APS diagnosed 20 years ago and take a number of medications for various things none of which were eye related. ( I have had cataracts and acute narrow angle glaucoma neither of which were linked to the Autoimmune) then in September of last year I suddenly lost a good portion of sight in my left eye inasmuch as all I can see out of the left eye is completely blurred. I was sent to Moorfields A&E who couldn't find out why and referred me to the neuroopthalmologist at Moorfields who I saw in December. I also came away with Optive x6 per day and VitA Pos at night for extremely dry eyes.

The neuro ophthalmologist has referred me for tests to Electrophysiology which I am due to attend tomorrow with the idea of testing if the messages that my brain is sending to my eye are working properly and if not I guess the question might be could the many micro clots I have in my brain because of the APS be linked to the loss of vision. Hope your eyes are less painful soon.

[Vbutton in reply to nonny]

Hi nonny that sounds awful. Do let us know how you get on please? What is aps ? My thoughts are with you for your appointment.

[nonny in reply to Vbutton]

Many thanks Vbutton 🙂 I think it may be a while before there is a conclusion but I will post when I know. Anti phospholipid Syndrome (APS) sometimes known as Sticky Blood.

[Vbutton in reply to nonny]

Good luck! And thank you that seems to be quite common for people with lupus but I had not idea what it meant!