Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Here we go again!

Last time I had a bad attck of iritis I was told by my specialist that she was too busy to see me! Suggested I see someone else! .
After a lot of stuffing around I did this (eye specialists in easy reach in this part of the country are not exactly abundant) and of course the attack calmed down & I was back onto just one drop of FML a day to keep it under control.(this cycle has been going on for 25 years now!) Even taking one drop a day, I still get a couple of attacks a year. Anyway, to cut a long story short - my new Dr wanted me to come off the drops altogether, firstly by taking them every other day. I told her that EVERYTIME this is attempted I get an immediate flare.
Well, you've guessed it - 2 weeks and I'm now having yet another flare of iritis. Will I never get rid of this condition !!!
After about my sixth attack of iritis (in England back in the 80's) I was told that in time it will most likely fizzle out. WELL I"M STILL WAITING FOR THAT TO HAPPEN!

Sorry - feel irritated today.



Take Care & Have Fun

Gwyn

Gwyn,

What can I say! Such a terrible thing to go through again and again and again.

I do hope that things get better for you. I cannot help because thankfully I have never had to deal with the constant flare that you have to put up with.

Just take care... lots of others will give you lots of advice.. thats what we are here for.

Max

May the roof above us never fall in, and the many friends gathered below it never fall out. - Irish Blessing

Gwen,

The best of luck to you my friend. I really hope that this situation can be taken care of as soon as possible. You have every right to feel irrateted at your doctor's __________ (fill in the blank, I would use stupidity at the very least)





Take care my friend

Daniel

I don't know if this will help you or not, but....

It may be a good idea to cut back. Long term use is not good for your eyes. And cutting back to every other day is cutting your doseage by 50%. That's a lot, and too fast. I couldn't do it either. So I started timing the doses. Try every 26 hours for a few days, then every 28, etc. It'll mean setting an alarm, but this is the only thing I've found that works. You might be able to cut back that way.

Hugs,

Cindy

So sorry to hear of your constant iritis problem, Gwyn. Touch wood, I've only had it once in the 30 years I've had AS, but my dad used to get it several times a year, all through his adult life, from the age of about 20 until the day he died, 11 years ago! My one bout lasted more than 3 months, and nearly drove me crazy, so I can imagine how frustrating it must be for you!! In the end, my rheumy and my opthalmologist agreed that I should start taking Methotrexate, as I was having a massive flare-up of all my joints as well, which had been going on for many months, and nothing was helping at all. So, very reluctantly, I agreed to, and, (touching wood again!) I haven't had iritis since, thankfully. I've now been on mtx for over 3 years, and it's allowed me to return to some kind of "normality" - at least compared to what I was going through before! Are you taking any sort of DMARD? It might be worth a try, if your doc agrees?

Cindy's advice also sounds good. I have a friend in the UK who suffers from repeated attacks of iritis as well, and she found that the steroid drops stopped working completely because she'd been using them for so long. So, in desperation, she went to a naturopath, who prescribed "EyeBright" (I think that's what it's called anyway.) She used it for a year, and didn't have a single iritis attack. Unfortunately it, too, stopped working for her eventually, so she had to go back onto the Maxidex, but at least that is now working for her again, presumably because she was off it for so long? Anyway, I don't know if it might help you, but could be worth considering.

Good luck and best wishes,

Sue

Dear Gwyn:

Iritis is not something you wait on to fizzle out!! By any and all means get rid of it yesterday, if not sooner.

The continual use of steroid eye drops is very dangerous and perhaps the opthamologists worry about increased eye pressure and incipient glaucoma; a very valid concern.

Ages ago, the ASA newsletter had an article about sulfasalazine preventing iritis. If you can take this drug (but only as Azulfidine--EN), you might consider trying. This is a drug that can be taken for very long term, unless you have a sensitivity to it (sulfa drugs).

Falling off the NSD (one of the several times), I started to get iritis and I treated it using Flagyl. I do not know exactly whether it was this antibiotic or more assiduous return to starch-exclusion, but I will do anything to avoid iritis.

I hope that you see your way out of iritis RIGHT AWAY,

John

Hi Gwyn,

I'd just like to add that I strongly agree with Cindy. Both my brother and I have had repetitive flares of iritis. First time was about 10 yrs ago, and slowly the frequency increased to the point of chronic smouldering iritis over the last 3 yrs. They told me I would never be able to come off the drops. So my brother and I started doing some experimenting and ignoring the doc's weaning-off time schedule. That was an easier path for my brother, (as I have the tendancy of following instructions to the letter,) but he has a tendancy to trust his own intellect - and be suspicious of everyone else's . We also discovered that timing is everything! To wean in absurdly gradual increments - and to make your alarm clock your best friend. I've been off Prednisolone for 3-4 months now - stopped counting and I'm crossing fingers while holding my breath!! Towards the very end, I used Voltaren Ophtha 0.1% (a non-steroidal drop) in between pred. to allow tapering even more gradually off the pred.

John mentioned that taking Sulfasalazine is suppose to help. I have been on this drug @ 2000mg/day throughout this past decade of repeated bouts,... which makes me wonder, how bad would my eyes have been if I wasn't on this??? Scary. I've had it 4x in both eyes at once - which is not suppose to happen. One Iritis specialist told me not to stop taking the Voltaren (nsaid) I'm also on (pill - not eye drop) - as it acts as an immuno-suppressive - and then I would be in even bigger trouble. So far I have never been able to verify if there is any truth to that - in fact I've heard the opposite! He said the only patient he's had who managed to free himself of chronic ongoing iritis - did so by quiting his job, moving out of the city, and eliminating all stress in his life. Not a realistic option for most people. I did however change out of a stressful work environment 1.5 yrs ago, and figure this has contributed to my recent success.

Best of luck to you - 25 yrs is way too long!

mig

Thanks for the tip. Will give that a go. As I have said - I have NEVER been able to wean off completely without a flare shortly afterwards but I have also never considered doing it by hours. Wish me luck..

Take Care & Have Fun

Gwyn

Thanks for your reply but what is a DMARD? Ann has told me before but I can't remember.

Ta


Take Care & Have Fun

Gwyn

Thanks for the info. Trust me though, I am not just waiting for this to fizzle out. Never was. I will run the Azulfidine--EN bit by my eye Doc. Go back to see her on Thursday so I will see what she says. Would be so great to get off the eye drops. Yes, the Docs are concerned about the long terms effects & glaucoma but as it goes they also have to be concerned about the constant effects of the iritis attacks themselves. Last time my pressures went quite high and I also now have a cataract growing in my right eye.

You never know - maybe this will be my last attack. Here's hoping.

Take Care & Have Fun

Gwyn