Dry eyes & Photophobia?

[Boroboy]

Hello all,
I suffered my first ever iritis flare within my right eye over two years ago now. No inflammation currently present. Since the flare I have been very photophobic within my right eye. Also suffer from dry eyes, especially my affected eye. I had the paper test performed on my eyes, right eye only producing 20% of tears required.

I now need to wear sunglasses indoors & out, due to the light sensitivity within my right eye. Also tried tinted contacts, which I could not manage to wear, due to eye irritation. Have now seen 2 eye specialists, my inner lens has scaring from the iritis. Eye sight good, just very sensitive to bright light.

I have also tried lower punctual plugs for six months, didn't improve photophobia or help with dryness. I now use Hyabak, applying drops every 15-30 mins over last 2 years.

I also suffer from Ankylosing Spondylitis, take Humira for that at the moment. Seems to be controlling my A.S. quite well. Was taking Remicade when iritis occurred.

Could dry eyes cause extreme photophobia? Any advice welcome.
Many thanks.
George.

[redhector]

photophabia

yes, dry eyes can be very photophobic, but your ankylosing spondylitis would be on the top of my list. there may low grade inflammation/iritis still present.
there are several nonstroidal anti inflammatory solutions you may want to try, Xibrom, and Acuvail (comes unpreserved). Nonsteroidals got a bad reputation due to side affects seen with Volateran eye drops. These newer solutions are much better.
Restasis may also help.
A mild steroidal solution such as Alrex would also be worth a try

[nycdryeyegirl]

Hi!

Here's a couple of suggestions that you might wish to try:

1. Restasis and/or cyclosporine eyedrops. Restasis eyedrops are used twice a day and it may take up to six months to see results. Cyclosporine (generic name for Restasis) drops made by a compounding pharmacy (i.e., Leiter's), which would allow you to increase the dose, for example from .05 to .2 mg. A number of folks on the DEZ forum have tried using cyclosporine drops made from a compounding pharmacy and have seemed to have benefited from it.

2. Serum autologous eyedrops: These drops are made from your blood serum. You have to have vials of blood drawn and then the blood serum is diluted with saline. The serum drops contains nutrients that might have a beneficial effect on the surface of your eyes.

3. Boston Scleral Lens: There is a sub-section on this forum called "Sclerals: The Liquid Bandage" which describes in detail the Boston scleral lens. According to what I've read in this sub-section,it seems to have a beneficial effect for folks who suffer from photo-sensitivity

4. The Dry Eye Shop (located on this website): They have a whole range of products from eyedrops to sunglasses, etc that might be of help to you.

I hope you found this information helpful.

Pam

[Boroboy]

yes, dry eyes can be very photophobic, but your ankylosing spondylitis would be on the top of my list. there may low grade inflammation/iritis still present.
there are several nonstroidal anti inflammatory solutions you may want to try, Xibrom, and Acuvail (comes unpreserved). Nonsteroidals got a bad reputation due to side affects seen with Volateran eye drops. These newer solutions are much better.
Restasis may also help.
A mild steroidal solution such as Alrex would also be worth a try

Redhector,
Thanks for your reply. I have had me eye looked at recently by an eye specialist, I travelled to London (UK), to see him. A 500 mile round trip, as I live towrads the other side of the country. As he was recommended, he is a practicing Auto Immunologist. He said that there was no inflammation present, try tinted contacts. Which I did. May have to go & see my local eye specialist again. The experience I have gained with eye specialists in the UK has been poor. Nothing offered to me, except the usual pred drops for the initial iritis treatment. I had to suggest the punctual plugs. Then he'd only plug the lower ones. May ask to see if I could have both tear ducts within the affected eye plugged. No plugs in at the moment, came out six months ago.
I will also talk to him regarding your suggestions, if they're available in the UK? I don't think Restasis is.

[Boroboy]

Hi!

Here's a couple of suggestions that you might wish to try:

1. Restasis and/or cyclosporine eyedrops. Restasis eyedrops are used twice a day and it may take up to six months to see results. Cyclosporine (generic name for Restasis) drops made by a compounding pharmacy (i.e., Leiter's), which would allow you to increase the dose, for example from .05 to .2 mg. A number of folks on the DEZ forum have tried using cyclosporine drops made from a compounding pharmacy and have seemed to have benefited from it.

2. Serum autologous eyedrops: These drops are made from your blood serum. You have to have vials of blood drawn and then the blood serum is diluted with saline. The serum drops contains nutrients that might have a beneficial effect on the surface of your eyes.

3. Boston Scleral Lens: There is a sub-section on this forum called "Sclerals: The Liquid Bandage" which describes in detail the Boston scleral lens. According to what I've read in this sub-section,it seems to have a beneficial effect for folks who suffer from photo-sensitivity

4. The Dry Eye Shop (located on this website): They have a whole range of products from eyedrops to sunglasses, etc that might be of help to you.

I hope you found this information helpful.

Pam

Pam,
Thanks for the advice. Have been struggling of recent, especially at work. Having to wear sunglasses indoors & out Even to watch tv indoors or comp etc. Have so for 2.5 years. NHS eye car in the UK seems poor. I've had to make most treatment suggestions myself. Even the lower plugs was my idea. Don't have them in now, thinking about asking to have lower & upper ones done within my affected.
Don't think Restasis is available on prescription in the UK.
Is it usual to have dry eye issues with 1 eye?
On a really bad day, I can't leave the house, due to photophobia, even with sunglasses on. Usually grin & bare it. If I have experience over sun exposure, say an hour with lightly tinted shades on. I can suffer badly for 3 days afterwards.

Once I've gone through the process again of getting to see an eye specialist, whom has to be referred from my GP. I will ask him about your suggestions. My local eye specialist, said that there was nothing he could do for me & I'd just have to wear sunglasses & a cap. Indoors? That's what I'm up against.
I will also have a look at the dry eye shop.
I have found Hyabak to be the best lubricating product so far, prescriptive free, too.
Hoping one day, I will be able to venture outside without sunglasses

Apologies for venting. Thanks for listening.

George.

[irish eyes]

Don't think Restasis is available on prescription in the UK.

George.

Hi George

No, it isn't available on NHS prescriptions but can be obtained privately on special one off basis. Can be prohibitively expensive though; Boots were going to charge me over £900 for around 6 weeks supply so I didn't bother with it. One can get it over internet but I've no experience of doing that.

My eyes are on the severe end of the dryness spectrum but the left eye has always been much worse than the right one.

Like you, I have a history of iritis but the cause has never been identified. Photophobia was more of a problem during the time I suffered badly with iritis. I recall doctors telling me that iritis could `burn itself out' and it seems to have done this - I get less frequent and milder episodes nowadays. Glare can still be a bit of a problem though.

[Rebecca Petris]

Like you, I have a history of iritis but the cause has never been identified. Photophobia was more of a problem during the time I suffered badly with iritis. I recall doctors telling me that iritis could `burn itself out' and it seems to have done this - I get less frequent and milder episodes nowadays. Glare can still be a bit of a problem though.

Ankylosing Spondylitis is auto-immune, isn't it? Iritis is too and I think it comes along for the ride with some other auto-immune conditions. My sister has ulcerative colitis (another auto-immune). She had a really bad iritis episode some years ago and since then she occasionally gets minor flare-ups.

Dry eye or even clinically insignificant tear film disorders can cause extreme photophobia in rare cases.

With the severity you're talking about, if it is tear related and not just related to occasional iritis episodes, I think that sunglasses (ideally 7Eye or WileyX style or similar being sure to get a complete seal around so absolutely no peripheral light is entering triggering those pain spasms) are the best bet in terms of 'easy' fixes, albeit not fun... I know of several people with extreme photophobia who were successfully treated with PROSE (new name for Boston sclerals) but that depends on exactly what's going on with your eyes. I do not know of any doctors in the UK that are familiar with PROSE and how to refer people but you may want to contact BFS for more information.

[Boroboy]

Hi George

No, it isn't available on NHS prescriptions but can be obtained privately on special one off basis. Can be prohibitively expensive though; Boots were going to charge me over £900 for around 6 weeks supply so I didn't bother with it. One can get it over internet but I've no experience of doing that.

My eyes are on the severe end of the dryness spectrum but the left eye has always been much worse than the right one.

Like you, I have a history of iritis but the cause has never been identified. Photophobia was more of a problem during the time I suffered badly with iritis. I recall doctors telling me that iritis could `burn itself out' and it seems to have done this - I get less frequent and milder episodes nowadays. Glare can still be a bit of a problem though.

Irish Eyes,
Found this link from one of the threds, none prescription Restasis:- http://www.edrugnet.com/showprice.as...Go.x=12&Go.y=9 Not tried it, so can't recommend supplier. Would prob work out at £70 for 30 .4ml bottles.
Never had an eye issue until iritis flare over two years ago. Now right eye really sensitive to bright light. The iritis was a killer at the time, think my pupil may have stuck temporarily onto my inner lense, causing scaring. I wear dark wrap around glasses all the time now, if I don't. I suffer big time. Now trying to lose the vanity issue of wearing them indoors, especially for work. Meet new people allot, sick of the 100 & 1 questions regarding wearing of my sunglasses indoors.
Will just have to get my head around it.
Thought Anky Spon was enough to cope with, then along came iritis
Are you also an A.S. sufferer?
Best wishes.

[Boroboy]

Hello Rebecca,
Hope you don't mind me replying to your previous thread to irish?
A.S. is an immune disorder. As far as I can gather, around 40% of A.S. sufferers will have at least 1 iritis flare.
Struggling to find out whether it's a dry eye issue causing my photophobia, mild inflammation poss left from previous iritis flare, damage caused to the eye (inc inner lense) or a combination?
Not easy when you can't find answers from so called specialists, having a little vent. Have seen 2 specialists now, travelling the last time to London to see a professor. He advised me to purchase some tinted contacts, for vanity reasons mainly, which I did. Unfortunately they didn't work out for me. Managed to find an independent optician, whom had them custom made for me. Kind of a soft lense, re-useable for up to a year. Think they're 87% water based. Still couldn't get along with them, due to the dryness of my eye. Had to give them a go, even though they weren't cheap.
I may try silicone punctual plugs for my lower & upper tear duct. Once I can get to see a specialist again. Have tried a lower one, made no difference.
A.S. now seems to be controlled well with the Humira I'm taking. It may also help with future episodes of iritis, which I never hope I have again (touch wood).
I do wear wrap around cat 3 to 4 sunglasses all the time. May try to buy a pair of wrap around type designer spectacles that may not look so obvious whilst at work. I work part time fortunately, not had any time off work yet due to my eye prob. Have came close on a few occasions.
Thanks for the link, I will have a look.

Appreciate your input.
George.

[Rebecca Petris]

George/Irish Eyes, sorry, somehow I got your threads confused! I quoted IE but thought I was replying to BB. Just mixed the two up in my head.

[Kate]

my husbands ophthalmologist say the tinited glasses FL-41 will block out the blue light causing part of the light pain. Also for out side polarised sunglasses with the tint. Most optometrist in Australia have not heard of it. However if you need the name of a couple of people here i can suggest a few. Also we ordered the wrap around sunglasses with tints from Axon online site in the USA. It has helped, so husband can venture out side however he does have severe photophobia and we think his dry eyes are slowly improving through the usual dietary supplements and NO alcohol (bugger!) and acupuncture, three times a week and chinese herbs. He has not been able to work since May it has been so bad! hope any of that info may help someone out there. Oh yes he is on Lyrica too. However we are not sure if that is helping much as the pain from the photo phobia is intense. Even watching TV is out.