Hi all. Been a while since I last posted.

3.5 years ago I had my first ever iritis flare within my right eye. After around 6 months of treatment (pred drops), from my Ophthalmologist, the inflammation has appeared to have cleared within my effected eye (or so I've been told). Although some pigment remains on my inner lens, due to the iritis flare.
Since the initial flare. I now suffer from extreme photophobia within my right eye. Have to wear sunglasses (cat4), indoors & out all the time now. Sunny days are very difficult to cope with, holding my part time job down is also very challenging too, especially when having a bad eye day. Having to wear sunglasses for work ect.
I've seen numerous Ophthalmologists both local & at London, as I live in the U.K. None of which seem to have any answers. My pupil within my effected eye seems to move as normal to different light conditions.
I have also had all my tear ducts plugged with silicone plugs, as I also suffer from dry eyes & possibly SJ. Use Hyabak frequently.

Regarding medication, I was on Infliximab prior & at the time of the flare, two years ago changed to Humira. Not sure either if there could be a link between Anti TNF & light sensitivity? Possible side effect?
I have decided to come off Humira for a while, to see if the photophobia improves. Not that this will help with A.S control & I struggle with n.s.a.i.d.s, due to the usual stomach issue's.

Does anyone else out there with A.S suffer from chronic photophobia like myself or any chronic eye conditions? Any advice would be very much appreciated.
Many thanks.

Hi, Boroboy:



"Look," don't mess around with Your eyesight! SIX MONTHS is WAaaaaaAAAYY too long to treat for iritis. It means one thing: THE TREATMENT WAS INEFFECTIVE! And You still have iritis that causes constant photophobia. This condition in some of us does not cause severe pains, but the light sensitivity is absolutely a give away that You have ACTIVE IRITIS.

When I got iritis the first time I was clueless and still taking the NSAIDs that caused this advancement in my AS in the first place, but this horrible aspect of AS that can result in blindness, is a wonderful TEACHER. And iritis is my primary incentive for being strict with my diet and cautious with antibiotics, but I will not put up with this condition. The last time I got it it lasted less than a week, but all the times together damaged my eyesight enough that I now require reading glasses: So, I'm not very bright--I ate starch until I needed glasses!.

Be smarter than I was,

KickAS,
John

John,
Thanks for your reply, I hear what your saying.
My treatment ended 3 years ago now, I'm now left perm photophobic within my right eye. I'm under a current specialist, see her now ever six months. I have seen around 6 specialists, 5 at my local hospital & one at London. He was a prof & an Auto Immuniologist. They have all now stated that there is no active inflammation present. May be another reason for the light sensitivity? Really not sure. Never had a prob with light, prior to the irirtis flare.
I have tried eradication diets in the past, for me, didn't find them helpful.
George.

Boroboy,

Most of us with A.S. suffer from photophobia all the time regardless if we are in a flare or have Iritis or Uveitis. It is just one of the major symptoms of having A.S. I have to have my blinds down all of the time, especially on a gray day and we have nothing but that here. We have the lights on the t.v. lowered and I use lamps instead of any fluorescent lighting. I always wear my sunglasses while outside. I know it is uncomfortable to say the least but it is part of having A.S. Since I started Remicade infusions along with the MTX, I haven't had any Uveitis breakouts and I'm not as sensitive as I was which is a God send.

Hi, so sorry you are having that awful symptom. I just want to suggest that you connect with uveitis.org. Dr Foster can consult with you and your current eye doctor. There are so few true ocular immunologists; I just want you to make sure you are absolutely seeing the best doctors who specialize in uveitis/iritis. It sounds to me that your initial treatment was under-aggressive, which is all too common for those of us with uveitis. I don't think that having such severe photophobia is typical, and I urge you to connect with Dr Foster to get to the bottom of it.

http://www.mersi.us/

Boroboy - LDN - low dose Naltrexone - has a proven pathway in dealing with iritis, so, just possible might help. Why not give it a try. And as you will be off the Humire might even find that it helps with yr AS...

Pea,
That's interesting to know, hadn't realised, generally speaking that A.S'rs suffer from light sensitivity.
Mine is severe. If I was to expose my affected eye to sunlight outside, say for 5 minutes. I'd suffer alot of pain for around 3-5 days. I have to wear my sunglasses even to watch T.V, use the comp or do anything apart from sleeping. Can't read for long periods of time, due to eye ache. I've learned to adapt to it over the last 3.5 years. Not been easy, neither is it easy living with A.S. I don't need to tell you that.
My initial flare started after a days fishing on a lake, with intense sunlight. My eye was aching, my car was a two mile walk away, to get my sunglasses. I didn't bother. Hadn't realised at the time that this was the onset of my first iritis flare. I also received the wrong diagnosis initially. My iritis wasn't diagnosed properly until a week later, then correct diagnosis & treatment given. So will never know if the delayed treatment has damaged my eye permanently.
If I'm having a bad day at work, I worry about finishing my shift due to pain, that's one of the hardest parts of living with it. Fortunately I've not lost any time off at work through it yet. luckily I work part time & have a very supportive family.
I've been on Anti TNF treatment (infilximab & humira), for around 8 years or so. I've not tried coming off Anti TNF to see if there was an improvement with my eye. Humira works very well with controlling my A.S. I know Anti TNF can be used to treat iritis, but at the same time I'm not certain that I'm suffering from a rare side affect related to Anti TNF treatment. At a guess, I'd say prob not. Only thing I have not ruled out.
Thanks for your post.
George.

Naj,

I have a while ago. I've been to see Dr Ayliffe, based at London. That was around 2 years ago now. He didn't provide initial treatment, that was provided by my local hospital opth. I'm currently seeing a dry eye specialist at my local hospital every 6 months. The other Opthamo's at my local eye hospital have said that they can't do much more for me. Wear a hat & sunglasses. Very helpful remarks like that, make my day. Not really.
Thanks for taking the time to reply.
George.

Molly,
I will ask about LDN nest time I'm in to see my rheumy. Not that they know I've come off Humira yet. Not the easiest guys to talk too.
Cheers.
George.

Have you tried Moorfields - they have a top level professor there whose speciality is iritis. He is clinic lead - will check for name for you. But he is at international level. Has a good reputation.