Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Frightened of Iritis

Been dealing with iritis for the past 8 months. Been on drop after drop and no changing. Am very afraid of what is going to happen to my eyes. As of my last appt., pressure, etc. was good. Been using pred forte drops and then another milder form as he didn't want to keep me on the pred for too long. Where can this treatment go from here? I've read other posts about injections, creams, etc. My doc has never mentioned any of this. He is an opthamologist (he specializes in microscopic and laser surgery of the eye including: sutureless cataract surgery, glaucoma, corneal transplantation, laser surgery for diabetes and retinal disease and Laser Vision Correction. )
Perhaps someone knows a good "iritis doc" in central Minnesota?
Would appreciate any advice, support - anything you have to offer! I am only 51 years old and am a frightened woman!!
Thanks,
Sandie

Sandie

Sandie, first of all - Welcome to KA!!

I'm so glad you've found us. Between all of us there's always someone who's had experience with something.

Iritis is very frightening, as many of us know and understand. I haven't had a full blown bout of it since 1991/92, when I battled it (and conjunctivitis) in both eyes (they played leap frog) for about 18 months. For the iritis, I used predforte, but I also used dilation drops to keep the eye muscles relaxed and I had to wear an eyepatch to protect my dilated eye from the sun. Are you doing that too?

An opthamologist is the perfect doctor for you to see about this. Have you talked to him about your concerns? About the other treatments you've heard of? What does your rheumy say about all this?

I find that for the past few years, I'll feel the telltale tension in my left eye that I recognize from the iritis and then I try to take steps to relax those muscles. If I can do that, I usually head the iritis off. I've gone into emerg. a couple of times (it's the only way I can get into my opthamologist without waiting three months for an appt.), but it's only gone full blown the once.

My left eye is now so sensitive to changes that my eye doctor gives me new prescriptions for changes so minute that she wouldn't normally give them to people.

Anyway, I'm rambling now and had better stop.

Hugs,

Kat

Hi Sandie,

Welcome! I'm sure you will enjoy this site! I have also suffered with Iritis. I ended up going to a uvetitis specialist. If you go to the Uvetitis.Org website, there is a list of specialists. Maybe that will help out! Good luck! I know it is scary!

Trinka

Hi, Sandie:

I really hate iritis, and cannot suffer with it very long.

There are some strange measures I go through to cut this one short (5 days or so), and would not want to shock anyone unnecessarily, so will email attachment upon request: aureq@inreach.com. Timing is good for this http://www.cayce.egympie.com.au/HealthAppleDiet.htm right now.

The 'Decadron' drops work very quickly for me, but I need to stay away from starches for iritis to stay away from me, although sometimes I do resort to antibiotics.

Hope you find relief soon,
John

Welcome to KickAS.

About iritis, been there, done that, done that, done that... and could write a book about it. My first iritis flare lasted almost a year. I thought it would never end. How often are you using the Pred Forte? I have used it as often as 2 drops every 15 minutes in the beginning. Dilating drops help relax the iris, and help bunches with pain, but you need to protect your eye from light. My iritis is under control when I use enough Pred to control the flare (and not always what the doctor says), then wean myself off it v-e-r-y s-l-o-w-l-y. I went from having iritis more often than I didn't to only having one small flare since starting Enbrel 18 months ago. Not sure yet what the connection is, but it was a pleasant surprise. My eye doctor gave me a script for Pred Forte with 10 refills, and said I knew what to do. I check in with him about once a year.

I really can't add anything to what Kat said, so I'll just shut up. If you do a search here, you'll find all kinds of iritis information and stories about our experiences dealing with iritis.

BTW, I grew up near Wadena. Sorry, I don't know of a good eye doc there, didn't need one till I came east.

Hugs,

Cindy

I am only one; but still I am one.
I cannot do everything.
But still I can do something;
I will not refuse to do the something I can do.
Helen Keller

Hi Sandie!

I just want to 2nd everything Cindy says, especially about weaning down off PredF incredibly slowly. I just wanted to add that although this is scary, you CAN beat this thing into submission and keep your sight! I've been battling this dreaded iritis on and off for over a decade and still have 20/20 vision . I too, have had iritis that just won't go away for extremely long periods.

It's hard to tell from your post what level of drops you're currently taking, but yes long term PredF can be a problem ... but long term inflammation is a greater risk in my opinion. I was on a 'maintenance' level dose of PredF for 2 years at one point.

Ask your doc to explain all the options and what is determining his choice of treatment. It may just be because you are no longer in a severe enough flare to warrant a different approach?

For me it's proved very helpful to get plenty of rest and avoid stress.
Good luck and take care!

mig

Sandie ,
I would recommend doing the apple fast as John (dragonslayer) suggested I have seen other people having really good results with that.

I myself use a supplement called Rutin, which stops the inflammation and pain of iritis far more effectively than steroid drops ever did. Maybe that supplement will work for you too? You should be able to find it in any really large chemist, if not they would be able to order it in. I posted a thread on Rutin in the AS Pharmacy forum here:
https://www.kickas.org/cgi-bin/w3t/showflat.pl?Cat=&Board=drugs&Number=95995

hope things get better,
z

"So long and thanks for all the fish" - Hitch Hikers Guide To The Galaxy

Thank you all for your support. Whew, glad to see I'm not alone. Or maybe "glad" isn't the right word. Sorry. But it is good to know there are others out there. Seem to find that in all aspects of AS.
I am currently on Lotemax. My doc won't let me keep using the Predfort. I admit - it's not as bad as it was but still sore and disruptive.
Going to check out the Rutin.
Don't understand the apple diet. No raw apples?
Thanks!
Sandie

Sandie

Hi, Sandie:

Cayce suggested that raw apples should be eaten for a three day 'monodiet,' but were not so good at most other times; cooked apples were normally better. I don't know whether he himself adhered to this advice, but he did say that three raw almonds per day were much more effective at keeping certain doctors away than the proverbial apple.

Today was my 'fourth day,' as I did not have the requisite olive oil available yesterday (procrastination...). This is a great cleansing diet and can be employed to get out of a flare, including iritis. After two such regimens in as many months, I was able to go for a long time without taking antibiotics; the NSD alone was sufficient.

Best to You,
John

Hi Sandie, good wishes for getting rid of the iritis! I'm working on getting rid of it too. I agree it's is a scary thing not to be in control of our bodies and to have our own bodies, in a sense, turning against themselves. This is my third month on the eye steroids and my cell count was down to zero at the last visit, so I'm tapering slowly off the steroids as Cindy suggested and HOPING the cells stay away! Even with no immune cells present, I can still feel it come and go, like Kat said. It seems solving the iritis is more of a "stabilization" issue than a "cure." Everybody has given great advice to you, and I just wanted to share with you what I believe has helped me:

1) The No Starch Diet. I'm trying it and I believe this is critical to helping our bodies heal and toning down the high reactivity. (I can't personally do the apple fast due to food allergies) 2) Rest and relaxation, like Mig described. This means both physical and mental rest. Treat it like a prescription--you have to be gentle and kind to yourself. You are #1--draw limits to what you do. 3) Avoid stressing the eye cells themselves. This means avoiding sunlight, and limiting reading or looking/focusing at stuff. I thought it might be good to force my eye to work, but my eye said "no." And even though I'm stronger now, I was surprised too much sun can bring back symptoms.

It is encouraging that Mig said she has retained her 20/20 eyesight through boughts of iritis! The doctors told me I would get my eyesight back, and I feel like I'm back to normal vision. I felt better just being told I would get better, so I'd like to tell you the same-- you WILL get better! It's nice that we can all support each other on our healing paths. with cheers, Ann