Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Iritis that won't go away

Hi Christy,

I know what you are going through. I had the same level of problem with Iritis. I've been battling Iritis on and off for 8 years. I then seemed to get it to the point that it wouldn't go away. My eye doc just kept having me put the pred forte in for a few months and kept telling me that my lack of vision was cataracts. Well, I ended up with severe macular edema which lasted for months (which sounds a lot like what you have). I finally was referred to a retinal specialist, and he did inject my eye 3 times with steriods I only wish I had gotten the treatments earlier and perhaps as it would have turned out better. ,After my injections then did additional florscene (sp?) scans and then another photography (OTC scan?). He told me that my retina was "thickened" and can no longer be repaired. Bottom line is that I'm legally blind in my left eye now. This all transpired in about 6-8 months. I was told that if I had come in earlier (to the retinal specialist), I could have had the same procedure you are considering, but since my macula is scarred, it will not help. I now only can wish I had gone earlier so I could have had it done! Good luck, I hope it all works out for you.

Bruce

Hi Christy,

Welcome to KickAS.

I never experience Iritis and hopefully won't have any - hope your Iritis go away soon with some advices from others here. You may send John DragonSlayer an e-mail - he's the best source

Take care,
Sinta

Hi Christy and... WELCOME TO KA!

I'm so sorry to hear you are having such a bad bout of iritis. Hopefully, you can get this under better control and quickly.

I've had iritis attacks for about a decade now, most lasting between 3-8 months. 3 wks may sound short - but it is obviously VERY concerning that they are failing to gain a positive reaction with these treatments. There's not enough info in your post for me to understand exactly what they did for you the 1st wk. You mentioned they started you on Pred F and (most importantly) the Isopto Homatropine (dialator drops). These are the 1st line of defense and are usually sufficient. BUT, you don't mention the Maxidex nightime steroidal ointment?

Hopefully, you were using this too? I'd also be interested to know what frequency you were told to start the Pred F? During my worst attacks I've taken Pred F every 15 mins for the first few days,... and when diminishing to every 1/2 hr, I've been told to 'pulse' the drops (1 drop - wait 1 minute - take an additional drop) then apply pressure to the corner of eye just above tear duct to ensure it doesn't drain right back out. Also shake the heck out of the bottle since it's in a suspension, and will fail to help if settled at the bottom of the bottle. Hopefully, your doc was checking you every 2-3 days in the first 2 wks to ensure you were showing signs of improvement? I'm telling you this to provide a measure for comparison. All docs are (unfortunately) not equal in education and experience.

But now you've had steroid injections which should have been effectively providing day and nightime coverage. It amazes me to hear that this is not reducing the inflammation!! 3 wks in such an acute state is scary.

Btw, Sulfasalazine takes 3 months to ramp up, so they can't be banking on this for immediate improvement. If you are (only) seeing an Opthalmologist, then I'd consider asking for a referral to an 'Iritis Specialist' today! They know more about iritis and it's ongoing implications than anyone else. Get a 2nd opinion. I know it's hard to go sit in a million waiting rooms when you feel like this,.. but it might be very valuable Christy.

The only other suggestion I can make is to get as much sleep as possible. When your system is under stress, it's harder to reverse. Extra sleep always helps my iritis settle down and helps prevent recurrring attacks. I have chronic low level 'smouldering' iritis now, and have avoided anything major since Feb, but I've never been as non-responsive as what you're experiencing. I've not personally tried John (Dragonslayer's) diet approach, but if I were in your shoes, I'd give it serious consideration. Many docs won't recommend it (tho say it's not harmful), but many people in KA attest it's beneficial for iritis.

Big (((hugs))) to you Christy, and please let us know how you are doing when you can!Take good care,
mig

Christy,
Glad you could join us. Welcome and I hope you find as much help, support & answers that I have.
I've been dealing with iritis now for coming up on 2 years. I still take one maintenance drop of Pred Forte a day. The doctor has tried to taper me off the drops 2 or 3 times and each time my iritis flares back up. I have also had oral steroids, and the intraoccular injections 3 times. My iritis was so bad that I have permanent loss of vision. I have it corrected for the most part now with glasses, but I'll never get that back.
It sounds to me as if your doctor has tried to taper you down too fast on the drops. That might be a thought. I hope your problem dosen't get to the extent mine did.
Best of luck to you. Keep us up to speed on your progress.

Glenn

Hello Mig,

Thank you for posting! On my first visit I started the pred forte 1 every hour and atropine 2 X a day. I was back in dr office 2 days later for a check up and it was worse so I was started on oral steroids. That was a Thurs so I did not return till the next Mon. It was looking alot better so they cut back the drop to 4 X a day. By Wed I was right back to square 1 so they gave me the injection. ( My last flare was 5 years ago when I was 21.)
I told the dr about having to get the shot last time to get a responce so I think they decided that would be best.They said come back in a week but I only made it about 5 days and I was red in the eye but no pain. This past Friday I went in for a checkup and My dr said it looked really bad and the back of my eye was real swollen and I was developing a pupillary membrane which made my vision go to 20/200. Need less to say he gave me another injection and started me back on oral again along with azulfadine.

Today I was back at the dr and they say it looks quieter. I still have swelling behind the cornea and +2 cells but moving in the right direction.

I have never been put on the night time eye ointment. Does that help you?

I think they are trying to take off the pred forte to quickly when it starts to look better.
I recomended maybe going on 1 mg oral to keep it in my system just to be sure.

Thank You for all your help. It is very appreciated! And thank you to all others that have also posted I will be keeping in touch!


Take Care!!!!

Christy

Hi again Christy! Thanks for letting us know how you're doing!

Oh I am surprised they didn't give you the Maxidex night ointment! I'd also have expected them to have you on Pred F more frequently at first. At a rate of 1 drop /hr they usually(?) perscribe the night time ointment (at least my doc does) otherwise you break the timing every night you go to sleep! 8 hrs without drops in acute stage can't be helpful. It just doesn't make sense to me? My doc stops the night ointment once I've lowered down to 8x/day (otherwise it is too powerful - they try to balance day & night dosage.)

It's possible you were in a far worse state than the doc could detect. The level of flare is often worse than what they see initially, so we must be on our guard. I'm glad to hear you were monitored more often than I'd suspected, but I sure wish they continued to and good for you for going back early.

Christy, even if you were appearing to improve, diminishing Pred F drops from 1x/hr to 4x/day seems way too quick. You're right, it's a reasonable assumption (based on your results) that they tried to wean you off too fast. You have to sneak off them... most of us have learned this the hard way. I know Cindy also has developed her own slow system to ease off these drops.

Eye injections provide steroids to attain 24 hr. protection. I am not as informed on the weaning procedure after having injections,... so hopefully someone else may speak up on this issue here soon, or I'll ask my brother for you.

I've managed through some tough episodes without ever taking oral steroids. The Pred F eventually causes cataracts, but doesn't effect you systemically. Oral steroids do effect your entire system and therefore should be carefully considered and slow weaning is also necessary.

Keep in tune with how your eye feels. Redness, light sensitivity, blurriness, speck of dust sensation, double vision, and headaches can all be clues. Trust your instincts when lowering eye drop dosage and let the doc know if you feel it's too fast relative to how your eye's been feeling.

I'm really happy that it has quieted down a bit for you, but stay vigilant!
Hugs!!!

mig

Christy,
It sure sounds from the way you describe it, they are tapering you off both the Pred Forte drops and oral steroids wayyy to quick. If you're on 1 drop per hour, they need to go down no more than to 1 drop every other hour at first. Anything less will cause a new flare. Same applies to the oral steroids. You have to wean off those as well. For instance, if you're on 40 mg/day, then you would need to first go down to 20 mg/day, then 10 and so on. My optho even had me down as far as .5 mg every other day before I quit the orals totally. I don't know if this is you're problem or not, but I'm concerned for your eyesight and hope they aren't just perpetuating your problem. Keep us updated as to your progress.

Glenn

Hey there Glenn!

Wondering how your eye's have been lately? I think I remember hearing you were in a flare just recently? Hope it's now back under control for you again!

Take care!

mig

On the Rutin thread, it was mentioned that steroid drops cause cataracts. Please keep in mind that inflammation ALSO causes cataracts. It's really a lose-lose situation, but allowing the inflammation to linger will also cause cataract.

I have had uveitis for 16 years, and I did develop a cataract (from steroids and inflammation), which I had removed in November. Cataracts can be fixed, but if iritis causes serious vision loss, that might not be fixable.

Christy, I am sorry to hear that your iritis is not responding to conventional treatments. I have been put in the hospital before for IV steroids to get a flare under control. This might be what you need too. If you need help finding a specialist, www.uveitis.org is a good resource for that kind of information. It also contains a discussion area where you can ask questions of a world-renowned uveitis specialist, and tons of information about treatment.

Kristin

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Kristin

Mig,
Hi there. Eye has pretty much been behaving itself lately. I still have some discomfort with it. Saw the optho yesterday by chance and she prescribed something for the pain, I think she called it Accular, but I haven't gotten it filled yet. I'm going to do that after work. Mine is never going to get better than what it is, but I can live with that. After the ordeal I went through for over a year, glasses are a small price to pay.
Take care, nice hearing from you.

Glenn