Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Remicade & iritis?

To be honest eye care in the UK poor, unless I was to go private.
I have been off Remicade now for 5 months, soon hoping, like yourself to start Humria.
My eye pain at the mo, not too bad (touch wood). I'm still sensitive to bright indirect/direct light.
Have an appointment with my Optemtoligist very soon, I don't expect any answers. Not sure whether or not the Remicade played any part? Never had any eye probs previous to the Remicade treatment.
George.

You have been very unfortunate to have iritis after being on remicade. I lost count years ago of how many bouts of iritis/uveitis I have had. It is definitely part of AS.
I have been on remicade since last July and I understood that it would put an end to the iritis and so far it has.
You are also unfortunate to have found eyecare to be poor. I live in Scotland and have had excellent treatment at the eye clinic at my local hospital. I have always been told that prompt treatment is important and am always seen on the same day as I present with symptoms even if it means going via A&E at a weekend which has happened sometimes. I have had a variety of treatments including direct injections of steroids on 3 occasions when it was very acute and not resonding to the drops initially.
After care has also been excellent.I am very happy with the care I have had for my eyes and AS. I'm sorry your experience has not been so good. Your eyes are so precious. Take care!

Mary,
Thansk for your reply & I'm pleased you received a decent level of health care within Scotland, you deserve it.
My AS care generally speaking within the UK has been OK. Eye care to be honest poor. My initial iritis flare has decreased, doesn't seem to be any inflammation within my eye now. Since my initial flare I'm now very sensitive to bright direct/indirect sunlight. Have to wear sunglasses outside on a sunny day, to watch TV inside & use comp etc. By the end of the day my affected eye seems sore. I have seen a opthamologist on several occasions & she doesn't seem to have any answers. I last explained to her about my sensitivity to light & her reply was "That's unusual". That's all she had to offer. I shall have to stamp my feet again on my next visit & demand some answers. Unless there is none? So called professionals don't always have the answers were looking for.
I am considering going to see an Autoiminiologist, may have to pay privet & travel to London. I feel my current opthamologist is more of a generalist in eye care, yet she runs an iritic clinic. Sometimes I feel that she doesn't take me eye problem seriously. You'll be OK, next please! Attitude.
I am considering going to see an Auto Immuniologist, may have to pay privet & travel to London.
Best wishes.
George.

George,

Sorry to hear you've been struggling with iritis for a while now... and have had a poor experience with eye care. I've had episodes of iritis for a few years now, and was getting very frustrated with my local Eye Unit - but then got the referral I wanted. I was referred privately at first, then transferred to the same consultant's NHS clinic when the appointment came through - and do not regret the private consultations one bit. The consultant I see is Professor W Ayliffe in London, he came highly recommended by members of another support group and I've felt very comfortable in his care since then. It's taken 18 months with medication tweaks, but it feels like things are finally under control now!

I do know that others were being seen by specialists in Birmingham (Prof Murray) and Manchester (Mr Jones), maybe those would be closer for you. But if this is an ongoing concern for you, do think about travelling for a consultation!

Good luck!

Roogy,
Thanks for the info. I've got an appointment to see my local eye specialist at the end of this month again, if I'm unhappy with the outcome of my visit I shall go down the private route. Hopefully like yourself may then get referred to see the specialist through the NHS.
That support group you talked about, was it iritis.org? I too have posted on that site & found them very helpful.
I may also soon have the chance of Humria, as I'm off Remicade now for good.
Cheers.
George.

George, Wishing you all the best. Hope things work out for you as they have for me. I try not to worry too much what the future may bring but I am just so thankful for what remicade is doing for me at present. Mary

Hi George!
After my first experience with uveitis (iritis) I was really mystified as to why my eye, and even the area surrounding my eye, kept hurting. My eye doctors didn't know why. I've come to learn it is quite common. My husband's explanation seems as good as any medical one I've heard: it is as though your eye has been injured. It just takes time for full healing.
My advice, as I've gone through this, is to rest as much as you can. Do as much stress relief as you can. Treat your eyes to Bion drops regularly, preservative free only. Warm wet compresses each morning and night. Eat really well and investigate whether fish oil supplements would benefit you. Drink plenty of fresh water. Please make sure you have plolarized wrap around sun glasses. There is a certain color for inside and another for outside that is best--I can't remember right now but I can ask for you. Consider joining www.uveitis.org which is part of Dr Foster's (leading expert in this) surgery and research institute in Cambridge, Massachusetts in the U.S. You can join the support group forum online "support and caring" and learn a lot about this condition and find specialists in the U.K. Please do excuse me if these suggestions have not been helpful as you are already aware of them, but if there has been anything useful you'd like me to provide a link for or whatever then let me know.
Best wishes,
Jan

Hey George, hope the appointment with your local eye specialist goes well. The support group I referred to is the one Jan also mentioned - at Uveitis.org
I've also recently had Humira mentioned to me since AS-like symptoms have appeared (MTX got my iritis under control) - we'll see how things go.

That's great to hear that you have a specialist. www.uveitis.org is the group I had mentioned. Uveitis (iritis) is considered so rare that true specialists are hard to find. I would strongly encourage you to use resources like Dr Foster's hospital to find a real specialist in occular inflammatory disease/uveitis because your vision is so precious.
Jan