Looking for answers?

[Boroboy]

Hi all,
My first post.
I'm basically just looking for some answers regarding my recent eye problems I have been suffering from.
I am a 40 year old UK male whom is a long sufferer of Ankylosing Spondylitis. I have also been taking remicade for around 5 years & have just recently stopped, partly due to side affect related issues.
10 months ago I apparently suffered from my first ever iritis attack within my right eye. I took the usual pred drops for 2 months. After that, seemingly the inflammation within my eye had dissipated or so my so called eye specialist informed me. Apparently according to her the inflammation within my right eye had diapered, but yet I'm still very light sensitive & have to wear sunglasses even to watch TV. Also my right pupil (affected eye), seems to be more dilated than my left, yet reacts to light normally (expands & contracts). My current Optemtoligist after some prompting, tested my eyes & said that there were some dry spots on the surface of my eyes, especially the right eye. Even though there appears to be no inflammation within my affected eye.
I'm still suffering from dry eyes, light sensitivity & chronic pain. Not at a high level, but annoying.
Do the symptoms I'm now suffering from sound like typical Sjogrens
Just looking for some answers, as my current Optemtoligist has none.
Many thanks.
George.

[lynnmarie219]

Hi Boroboy and welcome to Sjogrens World!

I'm not a medical doctor but I do have to say that when you mentioned dry spots on the surface and light sensitivity that it sounded very familiar to what I have due to the sjogrens. I currently use Restasis and OTC eye drops/gels as needed, but use them far less frequently now than when I wasn't using the restasis.

Did the doc offer any solutions to your dry eyes? Did he prescribe any meds or suggest over the counter drops? (please make sure you use preservative free drops if you do use these). It can sometimes be a hit or miss when trying eye drops to see what works best for each of us.....maybe he can offer you some samples of different types of drops to try before you buy as they can become quite expensive.

Good luck and let us know how you are doing!

[Boroboy]

Lynn,
Thanks for your swift reply & info.
The only drops I use at the moment are Viscotears & they seem to help a little. My current eye specialist hasn't been of much help, she is now referring me to the head Optemtoligist within my local eye care hospital. Hope he has some answers. I do know that iritis is quite common amongst AS (Ankylosing Spondylitis), sufferers. Yet the redness within my eye has gone, now left with light sensitive & generally sore eyes. Generally speaking I'd say my eye/eyes seem to get worse as the day progresses. Occasionally can have sharp type pains too within my eye. For some reason since the iritis attack my right pupil larger than my left one.
I shall have plenty of questions when I have my next specialist appointment, prob in a few months time. Knowing how the NHS works.
What's Restasis? Is there a definitive test for Sjogrens?
Just read up on Restasis, will ask my GP this week for a prescription.
Thanks again for the info
George.

[Linda196]

Hello George, welcome to Sjogren's World.

As you've found, Iritis occurs often in people with Autoimmune disease, including Ankylosing Spondylitis. Also, AIs occurs in groups, and it isn't uncommon for SjS to accompany diseases such as AS, in which case it's referred to as secondary SjS. Even after the  acute inflammation of iritis has resolved, the irritation can continue for some time, including the light sensitivity and soreness. Dry spots on the cornea need to be assessed and treated before they develop into abrasions, which are extremely painful and can cause long term vision problems.

Given a previous diagnosis of AS, and now with eye problems, have any of your doctors suggested Reiter?s syndrome?

There are blood tests designed to differentiate between AIs, Sjogren's antibodies, called SS-A (or SS-Ro) and SS-B (or SS-La), are specific antinuclear antibodies common in people with Sjogren's. However, you can have Sjogren's without having these ANAs, and the antibodies can also be present in other autoimmune diseases...diagnosis depends on the signs, symptoms, and the way the blood tests "come together" to show a prevalence or balance for a certain condition.

Restasis isn't yet commonly available in the UK, as far as I know. It's a 0.05% cyclosporine suspension which treats the immune response in the glands, it is not a lubricating drop.

I hope you find lots of helpful information here, I'm sure you'll find lots of support and sharing.

[Boroboy]

Linda,
Thanks for your reply & very useful info.
I will ask my eye specialist for specific tests relating to Sjogren's & I shall research into Reiter's syndrome idea. No dr's have suggested that.
My current eye specialist never explained to me that after my initial iritis flare I may suffer from ongoing probs. When I last explained my light sensitivity issues, my specialists reply was "that's unusual". Offered no other explanation. So eye care through the NHS, poor to be honest.
I went 2 weeks before appropriate treatment was given for my iritis, due to miss diagnosis.
I'm hoping my next appointment with the head Optemtoligist will be more fruitful.
George.

[Scottietottie]

Hi George 

Just wanted to add my welcome to you to sjogren's world.

Take care - Scottie 

[Chickpea]

Hi George

Wanted to add my welcome from another UKer in Brighton on the south coast. 

I wondered whether it's worth looking for an opthalmologist who specialises in SjS and/or AI conditions?  I saw one recently who was my rheumy's Registrar so he knows a lot about AIs.  Have you had the Schirmer's test?  That's usually conclusive for SjS, along with blood tests. 

Hope that 'Boroboy' doesn't mean you're a Middlesbrough fan.  If so, your symptoms are probably down to grief for your football team!

Take care - Chickpea

[Boroboy]

Chickpea,
Thanks for the welcome & input.
Was thinking about seeing an autoimmuniologist, but would mean a trip to London, as I live right on the North Yorkshire border, not too far away from that impressive team you mentioned. It's a must derby win for us when we play Newcastle or looks like it's be Championship football for us next season
Regarding the Schirmer's test, do you mean dry eye test? If so, I had one done by my head rheumy nurse a few years ago & she said I'd failed it.
I have also just had my first Humira injection, hoping that will help.
Best  wishes.
George........Come on BORO!!

[Boroboy]

Hi George 

Just wanted to add my welcome to you to sjogren's world.

Take care - Scottie 

Thanks Scottie for your kind welcome.

[Chickpea]

Hi George

Yes, that's the main dry eye test although there are others.  Being told you've 'failed' it isn't that helpful really - did they give you figures? 

Hope you adjust to the Humira ok.  I'm on CellCept, due to start cyclophosphamide soon.

It's wonderful to have someone to discuss footie with.  At Wednesday evening SjS chat they know I'll disappear as soon as it's kick-off time whoever's playing, but they do tease me for being a Spurs supporter.  Which is fair enough!  Shouldn't be a problem for you beating Newcastle, even if Alves is as useless as he's been recently.  I think they're the team more likely to be relegated but who knows even at this point in the season. 

Take care - Chickpea