Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group eye help needed STAT

Hi All of my eye experts,

I was told to stop the dilating drops yesterday, after seeing the eye specialist,but last night my eye ached and this morning the same thing. I also feel a bit nauseated.He said the eye was clear .Is it normal to have a residual eye ache? I am continuing the drops steroid drops four times per day. What is everybodys opinion on this.

Thanks in advance,
Janet

aloha Janet,
wish i had an answer for you...how many episodes of iritis have you had ?

tapering down the prednisolone is tough, it has to accompany the reduction in inflammation.
the pred can cause both/either glaucoma and/or cataracts( is that a waterfall ? spell check) with prolongued use.

I had iritis probably 25/30 times over a ten year period...none in three years now; BUT i have a residual
persistant amount of inflammatory material in my eye all the time. Shu says this is called 'smoldering inflammation'.
It's like constant pressure and sometimes feels like a cork-screw turning in the eye...op has no answer.
I also have cataracts in both eyes, double vision and focus problems, and little black specs that drift across
the field of vision, called 'floaters'... glad the iritis explosions are gone tho.

The sooner quicker faster harder you put down the iritis the better it is for your eyes...and your well-being.
all the best, good luck.
alohaben

Hi Janet,... sorry to hear you are having such troubles.

This sounds very odd to me that he is decreasing your Pred drops so fast???? Please correct me if I am wrong, but on Feb 15th you posted that you were taking drops every 2 hours,... assuming you stay awake approx 16-18 hrs/day that is roughly 8-9 drops/day. Now only 1 week later and he wants you to drop down to only 4 drops per day... that sounds way to fast compared to what my Opthalmologist does. Way too fast.

It does makes sense that your doc would stop the dilating drops as they are generally only used in the first few weeks of treatment depending on the severity of inflamation of course. I would guess that the reason you are feeling a deep aching would be more apt to be caused by lowering the steroid drops too fast, rather than stopping the dilator. I also relate the nauseated feeling to the withdrawal of steroids drops and not the dilator.

If you have just weaned down to 4 drops/day of Pred (and were higher than 6/day over the last week) then I would consider adding a drop back in today and calling your doc to discuss this course of dropping back. It is dangerous to drop too fast as this can cause iritis to rebound. Experiencing pain is a signal that shouldn't be ignored.

Best of luck to you Janet!

mig

Hi Mig,
You are correct on the details, and I am thinking this as well. I saw a different bunch of doc's for the first two weeks and then sent back to my regular eye specialist(back from his holidays) I think it is way to fast as well. He also told me to come back in six months? WHich really surprised me. I have had this ache since last night ,so I think I better call.
Thanks for your detailed reply,
Janet Poole

Hi All,
I had no idea it could flare so fast. Last night at bedtime my eye was throbbing, and I felt nauseated.I got up and took a tylenol #3 which I never do and hadn't for this even in the beginning. I talked to him and I am back on the 2-3 hours and the dilator and will see him on next Monday. I really think his brain was still on holidays.

Thanks Again,
Janet

6 months?!!? 6 months is NOT acceptable. Okay, I rarely would say (or feel) this way about a doc,... but this guy really sounds worth losing!

If your 'eye specialist' isn't an Opthalmologist then perhaps he could be useful in referring you to the care of a proper Ophthalmologist, and preferably one that sees a great deal of iritis cases. Good experience makes a difference.

It is true that the goal here is to cut back on steroid drops in the most efficient way possible, since longer term use promotes cataracts. So the less you use the better off you'll be but if you go down too quick then you risk a rebound.. leaving you with a larger sum total of drops in the end. It has to be in balance and it has to be monitored. A good doc will schedule you in about 2 weeks after you've finished all drops... just to check.

I got AS at 18, dx'd at 21 and I've had iritis (more times than I can count) for over a decade. There are some lucky people who don't have recurring episodes but it is more likely than not. It is worth the effort to find the best Opthalmologist available and then get on his patient list!

Last thing, you may notice that even a good Ophthalmologist cannot detect inflammed cells as well as you can when it's low and 'smouldering'. If you go back and they say "all is clear" keep paying attention and go back again if you still have pain... even at the risk of looking silly. It is better to look silly with sight than without! Sometimes their sophsiticated machines lag about 1 week behind me in early detection.

Take good care Janet!
mig

Oh no! Sorry Janet, I just read your new post! He should NOT be waiting for Monday to see you. Honestly this is too long and this doc's abilities are sounding less and less capable. Mine would never make such a dramatic change without seeing the level of inflamation in your eye.

I am very worried his brain is STILL on holidays, Janet.

There is an eye institute in Ottawa (I believe), and I think perhaps you should go and seek a 2nd opinion tomorrow. If it was me, I wouldn't wait for your current doc to get with the program and potentially damage your precious vision in the process. Yes, my message is intended to scare you a little... sorry.

Take good care and time the drops religiously!!!

mig

Janet,

I'm sure you have alot more experinence with steroids than I do, but tapering to quickly eck....flare straight away, and the eye flare can make you feel nauseuos etc. The pain can affect the cheeks and jaw as well.

I had a bad one just before Xmas, they tapered me off the oral abit too quick. At first they gave me OTC until I was just about double blind on everything. They reacted and the GP gave me something I can't remember the name but it was n' t preddy another steroid, about 60 times more efficiant, and we hit it on the head in 4 days. In the past it's taken weeks!

I'm still waiting to see the eye Dr so I do n't know what eytis I have, but I can understand abit about you pain and concern.

Hope things get back on track quickly for you

David

Hi Janet

I just have to say that I totally, 100% agree with every bit of advice that Mig has given you.

How is the eye now ?

Maggie

I agree with Mig too.

Take Care
Wayne