Tinted contact lenses & photophobia?

[Boroboy]

I had my first ever iritis flare within my right eye two years ago. The iritis has now cleared up, but I'm now left with photophobia. Now have to wear sunglasses indoors & now.
After a recent visit to see an Uveitis Specialists at London (600 mile round trip), he suggested tinted contact lenses.

Has anyone had experience using tinted contact lenses? Anyone know of a optician that can supply me them close to the North East of England area? Have tried a few, all have said that they can't get hold of them. Closest availible, being London.

Would be very happy if I could stop wearing the sunglasses, especially idoors for work.

Mike B, thanks for the advice regarding seeing an Uveitis Specialists (Mr Ayliffee). Took me a year to get round to it. Was certainly worth my while. At lest he had some suggestions regarding managing my eye problem.

Many thanks.

[Mike Bartolatz]

if your eyes are quiet, why are you still photophobic?
do you have dry eyes? photophobia can be from both uveitis and dry eyes where cornea is involved.

I Have no idea where you can obtain tinted contacts. you could see if you can get them online if they aren't available locally.
I still use sunglasses while on the computer when I'm photophobic. I can't wear contacts because of my severe dry eyes.

I'm glad you went to see Mr Ayliffe in London. He's the best in the UK,

Wish you the best,
Mike

[Boroboy]

Mike,
Yes travelled down to Croydon to see him, was worth wile. He suggested tinted contacts for me, to manage my photophobia. I have now had to wear sunglasses continually for the last two years, well apart when I'm asleep
As far as I can gather no inflammation present. I am now left with a plaque of pigment on the anterior capsule of the lens and in addition have some complete construction of my pupil within my effected eye. This according to Mr Ayliffee has gave me significant photophobia.
Also my pupil within my affected eye seems slightly larger & seems to react to light more slowly, but does expand & contract, as it should.
If I was not to wear my sunglasses & go out on a sunny day, for say ten minutes. I would be in allot of pain for around 2 to 3 days afterwards.
I had no light sensitivity issues or eye pain prior to the iritis flare. Also had slight delay in receiving treatment (5 days). Due to wrong diagnosis by an optician.
So now looking to manage problem. Need to have eyes measured & tested for contact's I believe.
Sick of wearing sunglasses indoors, feeling bit paranoid about it. Especially whilst at work. That's where I thought the contact lenses may help.
Only other issue, I too suffer from dry eyes. Using Hyabak every 30 mins, also tried plugs for six months (didn't help).
George.

[Mike Bartolatz]

George,
good luck in finding an optician that can get the tinted contacts for you.

did Professor Ayliffe suggest use of restasis to try to get your lacrimal glands working again?

wish you the best,
mike

[Boroboy]

Mike,
Spent most of today ringing around local opticians to see if they could fit me a pair of bespoke tinted lenses, after phoning eight. I managed to find an independent that could make me a pair lenses Going on Sat to start the fitting process off. Looking forward to being able to walk outside for 10 minutes, without sunglasses ..... ... Main issue for me, wearing them indoors for work. Obviously I will have to pay for these privately, hope they help. Took over two years to get to this point.
Regarding restasis, I had given that some thought prior to seeing Mr Ayliffe. He didn't mention it. As far as I can gather not available without prescription in the UK. I think the eye damage is causing most of my photophobia, rather than the dryness. Time will tell.
I did however find a website that was prepared to sell me restasis without a UK prescription, via Australia, I think.
Have you had any joy with restasis? From what I've read, seems to be a bit hit & miss, regarding a positive outcome for dry eye sufferers. I think my dry eyes prob caused by Sjogren's.
One thing I can say for certain, if your not happy with any prognosis, worth having a second opinion. Was for me anyway. Mr Ayliffe was very good & took time to explain my eye condition to me. Unlike my previous specialist.

How are you keeping?
George.

[Mike Bartolatz]

Restasis takes time to work, but you will know in about six months of constant use if it will work for you. it is prescribe by prescription here in the USA. I don't know if I'd trust an online pharmacy without checking it out as there is a lot of bogus stuff available online.
Restasis works well in Sjogren's patients. did you have a positive Lip Biopsy to confirm Sjogren's? Sjogren's can overlap with many of the Rheumatoid Factor postive connective tissue diseases so be vigilant.

I've never used Restais myself as punctal plugs have worked well for me along with the preservative free single use vials of lubricating eyedrops. MY eyes are impacted with dryness most during the periods where I have to heat my home as I have forced air heating. it is often recommended that one get a humidifier and to use it in the bedroom at night because of this.

was Professor Ayliffe made aware of your Sjogren's syndrome and it's severe dryness impacting your life and work?
the Dryness issue is one that can be very debilitating for some of us. they make a special contact lens here in the USA for helping to keep lubricant on the surface of the eye. it is called a 'BOSTON LENS'. you might see if it is availabe there in the UK. I believe this lens can be made with a tint too. they are very expensive however so I'd try Restasis first to see if the Lacrimal Gland inflammation can be controlled and output of fluid can be reinstated. Restasis BURNS terribly for several weeks on starting it because of the damaged conjunctiva from the severe dry eye. over time the burning goes away as the Conjunctiva is repaired. Photophobia from damage to the cornea goes away too. so until this happens, it is hard to determine if it is the Dry eyes or the uveitis causing the photophobia.

Wish you the best,
Mike

[Boroboy]

Mike,
I've only had the paper test done on both eyes. My effected eye was very dry on test. Sometimes I suffer from a dry mouth too. NHS care not too advanced here in the UK, so never been offered any other test.
I did let Dr Ayliffe know about my dry eyes, he just said continue on with my additive free Hyabak lubricating drops.
My photophobia started on the first day of my initial iritis flare, never been the same since. That's mainly the reason why I put my light sensitivity down to that, rather than dry eyes.
I would try Restasis, don't think I can get hold of it via prescription in the UK.
I shall ask about those Boston lenses.
My eyesight still very good in both eyes, just the extreme light sensitivity & pain the main issue now. Great in the dark. Even whilst asleep. Sunlight, a killer. Still have pain even with sunglasses on, just less than without them.
Thanks for the info.

[Boroboy]

Just an update.
At last, found an independent optician that can make me a pair of custom made tinted contact lenses Going to be dark brown in colour, will cover the whole iris & pupil on each eye. They are a soft contact type, which I have to take out every night & re-use again in the morning. These should last a year, at a cost of around £290, which includes a consultation & follow up appointments, 1 month to trail the correct lenses tints, eye initial eye test. I have tried a similar contact type, fortunately for me they feel very comfy.
Will have them within two weeks. Hopefully will make my eye photophobia more manageable, especially indoors. Goodbye sunglasses for working indoors.
It has took me over 2 years to end up at this point, two eye specialists later. Allot of research.
If anyone in the future would ever require tinted contact lenses for photophobia, I'd be happy to point you to a good optician (North East of England area). Took me a while to find a decent one that could actually have a custom pair made for me. Most unable to help, as most contacts have a hole in the middle of them for the pupil. Mine cover the whole pupil & iris area, to give maximum sun protection. Tint levels will be custom made too.
Feel free to post or PM me in the future if I can help.

[Mike Bartolatz]

George,
I'm glad you have been able to get the tinted contacts fabricated for your light aversion. please post contact information for this optometrist and information on the optician who is fabricating them for you so that others can use the information in the future. I'll post it in the Specialst forum in an anouncement.

wish you the very best and thanks in advance,
Mike

[Boroboy]

Mike,
Will do, once I have tried & tested them.
Thanks again for your help.
George.

[mtbargeman]

George,

Very glad you got the lenses. Have you ever had cataract surgery? I would be interested to know, because I have had it. If I could wear a contact, rather than my VERY large and heavy spectacles, I would look into it. My spectacles are actually so heavy, they cause me nasal/sinus problems...A contact would be awesome...

Mary

[Boroboy]

Another update,
Ten days on from wearing my tinted contacts. Not good, my affected eye continually sore from wearing it. I'm finding vision poorer with them on, compared to wearing sunglasses alone. Seem to lose some quality of vision with them fitted. I would also need the tint darkened further, from 40% to probably a 60% tint, to gain the protection needed. Vision then would be further degraded.
Looks like I'm back to the drawing board, back to permanently wearing sunglasses indoors & out. At least I now realise that contacts are not for me. Had to give them a try.

[Boroboy]

George,

Very glad you got the lenses. Have you ever had cataract surgery? I would be interested to know, because I have had it. If I could wear a contact, rather than my VERY large and heavy spectacles, I would look into it. My spectacles are actually so heavy, they cause me nasal/sinus problems...A contact would be awesome...

Mary

Hello Mary,
My contacts didn't go down well. Cataract surgery not been offered to me through the usual channels, I did ask. Last specialist said don't bother, as it might trigger an iritis flare. At this moment, I think I would consider a replacement inner lens, tinted 1 would be nice. Not even sure if that would be possible or worth the risk?
My brother has poor eye sight, he tried contacts 3 times, over two years. He too, couldn't get along with them. Made his eyes sore. Think he had to use a reusable contact lens (like myself), not a daily disposiable. The daily's, easier on the eye. Think if your eyesight poor, may have to go with a reusable contact. All expense too. Cost me £200 for the lenses & £75 for eye test, optician consultation.

Can you pay extra to have your spectacle glass lense skimmed? My brother did, his glasses light in weight.

I just feel a bit self conscious about wearing sunglasses indoors. Not bothered about wearing them with family, friends around. Work really, meeting new people etc. I'm lucky with my job, out & about in community mainly. Only have to attend office a couple times per month, sometimes more if on a training course. That's what bothers me mainly.

[Mike Bartolatz]

Sorry the tinted contacts are not working for you. sounds like you might have severe dry eyes causingthe discomfort which was my problem when I tried contacts years ago. hopefully your eyes will quiet down and the photophobia will diminish over time. it is usually a sign of active inflammation, optic neuritis, corneal inflammaton etc.
I would think that your opthalologist could get you a prescription so that you wouldn't require vision test/prescription from an optometrist. the NHS should then pay for this if I recall correctly from what othere in the UK have indicated.

wish you quiet eyes,
Mike

[Boroboy]

Sorry the tinted contacts are not working for you. sounds like you might have severe dry eyes causingthe discomfort which was my problem when I tried contacts years ago. hopefully your eyes will quiet down and the photophobia will diminish over time. it is usually a sign of active inflammation, optic neuritis, corneal inflammaton etc.
I would think that your opthalologist could get you a prescription so that you wouldn't require vision test/prescription from an optometrist. the NHS should then pay for this if I recall correctly from what othere in the UK have indicated.

wish you quiet eyes,
Mike

Mike,
Mr Ayliffe examined my affected eye thoroughly, he said that it didn't look like there was any active inflammation present.
I have good & bad days, winter dark cloudy weather best. Direct or indirect sunlight, even with sunglasses on very painful. Went to a works meeting last night for a couple of hours, wearing a lightly tinted pair of spectacles. Paying the price today.
As you say, hopefully in time I will see some improvement, 2.5 years now since my iritis flare.
Thinking about going to see another specialist for a third & final opinion. Probably someone local.
Mr Ayliffe didn't really suggest any other treatment, just went along with the tinted contacts idea. I am currently taking Humira for my Anky Spon.
Thanks again for your input.