Sjogren's & light sensitivity?

[Boroboy]

Hi all,
I had my first iritis flare around 9 months ago now, that has seemed to have cleared up now. I am now light sensitive within my right eye (especially sunlight) & have to wear sunglasses for most of the day, even to watch tv. My eye specialist tested me for Sjogren's via the paper test, apparently the paper markers read around 2.4 mm from each eye, he said they should be at around 11mm for a normal person.
I am a long term sufferer of Ankylosing Spondylitis, which will probably be linked to my eye condition. I have also been on & off Anti TNF treatment for over 5 years now. I never had any eye probs until this iritis attack. Now suffering from a painful persistently sore right eye. My right pupil is also more dilated than my left, yet reacts to light normally. I have had my eyes checked by the head Optometrist within my local eye dept on numerous times. He can't offer me any advice, apart from the fact that I'm suffering from dry eyes & continue on with the artificial tears.
Any advice? Does anyone else suffer from light sensitivity? Is light sensitivity linked to Sjogren's?
Many thanks.
George

[Cheryl]

George,
   I'm sorry about your eye pain.   Yes, it can be linked to Sjogren's.  I have trouble with it, too, especially in the summertime.   I hate being a hermit on sunny days, but being outside in the brightness can cause my eyes to ache and sting for days.  (I love overcast days.)  A tip that may be helpful:  the steam from a hot shower almost always gives me relief.  Hang in there.
Cheryl   

[missyb]

yes yes yes, my eyes hurt all the time in the light, plus they are blue w/ is even worse in the light

[Redetha1]

I had one week when my left eye hurt every day.  Othomologist gave me lotemax drops.  It helped to clear my eye from the pain .  I also take flaxseed oil everyday.  It is over the counter.  Have seen improvement with pain but my eyes continue to be sensitive to the light.  I think a lot of SJS people may have the light problem.  I am not an expert so this is just my opinion.    Will be thinking of you.

[kathyl]

Even florescent lights hurt my eyes.  I had to take lamps into work.  I use sunglasses and an umbrella outside all the time.  Even looking at the moon through my telescope without the moon filter will give me pain and start a headache.  I asked the Ophthalmologist if I could have tinted contacts or something and he said that won't help, talk to a neurologist.  They just suggest more drugs.  Good luck.  I wish for cloudy days but I live in Arizona.
KL

[agatha]

Oh yes, light is dreadful - I like the grey drizzly days you get in the English Lake District where the light is muted and the air is very damp and fresh.  Sunny days are the pits.
Agatha

[Boroboy]

Thanks everybody for your interesting & informative replies.

I hadn't realised that SJS caused light sensitivity. I have now suffered persistently (every day), from eye pain for around 9 months, since my initial iritis flare To varying degrees of pain, low to medium levels, but seems to be chronic now.

Has anyone had any experience with tear duct plugs? Would this help? My eye specialist had offered to plug one tear duct up within each of my eyes, I said I'd have a think about it.

Surely there must be more to SJS than just lack of fluid within the eye or mouth. Why the light sensitivity?

I was beginning to think that my Anti TNF treatment had caused my eye probs. Have suffered from other related side affects, including raised ALT's, skin probs & sore throat. All off & on since starting Remicade & now Humira. Every time I stopped the Anti TNF treatment the mention side affects also cleared up.

[yodeb]

I am newly diagnosed and plugs were suggested on my first eye doc appt.  I said yes to give it a try and I am glad I did.  It has made a positive difference for me.. I still need Restasis and tears in between.  My eyes itched a bit once they went in, but very tolerable considering all my other "concerns"....

Hope that helps!

[Kewanee]

Hi all,
I had my first iritis flare around 9 months ago now, that has seemed to have cleared up now. I am now light sensitive within my right eye (especially sunlight) & have to wear sunglasses for most of the day, even to watch tv. My eye specialist tested me for Sjogren's via the paper test, apparently the paper markers read around 2.4 mm from each eye, he said they should be at around 11mm for a normal person.
I am a long term sufferer of Ankylosing Spondylitis, which will probably be linked to my eye condition. I have also been on & off Anti TNF treatment for over 5 years now. I never had any eye probs until this iritis attack. Now suffering from a painful persistently sore right eye. My right pupil is also more dilated than my left, yet reacts to light normally. I have had my eyes checked by the head Optometrist within my local eye dept on numerous times. He can't offer me any advice, apart from the fact that I'm suffering from dry eyes & continue on with the artificial tears.
Any advice? Does anyone else suffer from light sensitivity? Is light sensitivity linked to Sjogren's?
Many thanks.
George

Uveitis or Iritis is more common to AS but they have specialists just for it. Dr. Steven or is Stephen....Foster in Mass. has led the field in research and treatment of this stubborn disease. It can cause blindness. You see white cells when you look into the eye. The Doc. is online as well as a list of Dr.s he has trained to be specialists in this disease. Maybe one is in your area. My husband has this as well. He's seen Dr. Foster and was not dissappointed, also a referal to someone local to us who knows his stuff. Methotrexate has helped alot in addition to the drops.

[Shell]

Hi George,

Kewanee is correct, Dr. Foster is highly regarded in the field of ocular immunology.   I don't have iritis or uveitis, but I have a history of corneal inflammation.  I see someone locally who was trained by Dr. Foster and is outstanding.  Given your history, I second the recommendation to be followed by someone who has specialized training in ocular inflammatory diseases.  Here's the link to his website, where I think you will find plenty of information about iritis:

http://mersi.us/

There are forums associated with the board, including one in which you can post questions directly to Dr. Foster.

Best of luck,
Shell

[TerriJ]

I have also become sensitive to light.  I've been diagnosed with fibromyalgia too and that may also contribute to this.  I am also sensitive to noise.

Terri

[Chickpea]

Hey Boroboy

Good to see you back here.  I thought you'd gone into mourning at the end of the football season - not that I'd blame you!

You say 'Surely there must be more to SJS than just lack of fluid within the eye or mouth.'  There certainly is ... it's incredible how much of the body is affected by dryness.  Many of us here have central nervous system issues because of it, and others have major organ involvement.  This is certainly the 'gift that keeps on giving'. 

I thought you'd like to hear my rheumatologist's latest piece of advice.  I've had 7 weeks of severe digestive problems, probably caused by SjS dryness and also SjS nerve damage.  I asked his advice last week and he suggested ... a glass of sherry before each meal.  Very practical and SO healthy.  I wonder whether I can get a prescription on the NHS?!

Thinking of you - Chickpea

[Boroboy]

Hey Boroboy

Good to see you back here.  I thought you'd gone into mourning at the end of the football season - not that I'd blame you!

You say 'Surely there must be more to SJS than just lack of fluid within the eye or mouth.'  There certainly is ... it's incredible how much of the body is affected by dryness.  Many of us here have central nervous system issues because of it, and others have major organ involvement.  This is certainly the 'gift that keeps on giving'.  

I thought you'd like to hear my rheumatologist's latest piece of advice.  I've had 7 weeks of severe digestive problems, probably caused by SjS dryness and also SjS nerve damage.  I asked his advice last week and he suggested ... a glass of sherry before each meal.  Very practical and SO healthy.  I wonder whether I can get a prescription on the NHS?!

Thinking of you - Chickpea

Chickpea,
Thanks for your reply.
Excuse my naivety regarding SJS, I surely have allot to learn (I should have checked SJS World Home first). Would have helped.
My SJS is prob related to my Ankylosing Spondylitis. Very difficult sometimes when the so called specialists have no PRODUCTIVE answers
Yes I have also experienced ridiculous comments made by my my rheumy too.
In the early days of my AS prognosis, I had just lost my job due to AS & had gained weight, whilst feeling depressed & in allot of pain. I asked my rheumy for advice. He tapped his fingers along his desk & replied, Sorry there's nothing I can do for you! You'll just have to eat less. Just the tonic I was looking for
I generally find self diagnosis works best, lost faith in so called specialists. Pushing them along the right track diplomatically, tends to work for me. Especially as far as treatments go.

May sound crazy, but close to kicking my Anti TNF treatment into touch & having a fresh start. At least then I'll know whether or not my Anti TNF treatment has caused my eye prob. I certainly have suffered from other side affect related issues directly related to the Infliximab (Remicade), treatment. I'm a great believer in going with what you feel. At the end of the day, we know best. Off my soap box now

Championship footy next year Tickets might be cheaper, not! Those plastic seats kill my back. At least I'll have plenty to choose from 35,000 seater stadium, prob 22,000 next season.

I've had a great day today (Farthers Day),  
Best wishes.

[Boroboy]

Hi George,

Kewanee is correct, Dr. Foster is highly regarded in the field of ocular immunology.   I don't have iritis or uveitis, but I have a history of corneal inflammation.  I see someone locally who was trained by Dr. Foster and is outstanding.  Given your history, I second the recommendation to be followed by someone who has specialized training in ocular inflammatory diseases.  Here's the link to his website, where I think you will find plenty of information about iritis:

http://mersi.us/

There are forums associated with the board, including one in which you can post questions directly to Dr. Foster.

Best of luck,
Shell

Shell,
Thanks for the info & taking the time to answer to my post.
I will check your link, I have heard of Dr Foster from iritis.org.

[Boroboy]

[/quote]


Uveitis or Iritis is more common to AS but they have specialists just for it. Dr. Steven or is Stephen....Foster in Mass. has led the field in research and treatment of this stubborn disease. It can cause blindness. You see white cells when you look into the eye. The Doc. is online as well as a list of Dr.s he has trained to be specialists in this disease. Maybe one is in your area. My husband has this as well. He's seen Dr. Foster and was not dissappointed, also a referal to someone local to us who knows his stuff. Methotrexate has helped alot in addition to the drops.

[/quote]

Thanks for the info, I shall look into it. As far as I know Dr Foster is based at London.
Best wishes.