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

Hi 24in83,
Thanks for your post. I haven't been very good at all about exercising lately. This is a good excuse to kick myself in the butt and get exercising...tomorrow. :-)
(Seriously, though, I will get out for a walk or shovel some snow or something; sounds like we have a big storm coming tonight so I'll have lots to do tomorrow!)
Marcat (Mary)

Excellent website, Zernike!

I remember those flashes so well. What was really really creepy about them was there would be this really short white light, but there was NO sound. Must have been the conditioning from all those horror movies I've seen, which always have a music sting or a scary sound effect or something. But without any audio, it made it even creepier, like not only is the monster coming, but your speakers are broken, too!

I can still get those flashes when I turn my neck all the way in one direction, like before backing up in a car to see if the road is clear. Solution: now I turn around completely to avoid that-

Zernike, thanks for the websites.. I guess I'll make an appointment.
cc

Hi Mary,

I do not believe it's true that people don't lose their sight due to iritis, even here. Iritis is the 3rd leading cause of blindness and the odds of it harming your vision over time, naturally increase with the number of attacks you suffer. Not because the treatment with steroids isn't effective but simply because sooner or later you may miss getting immediate treatment, or will run into pressure problems. There are not many treatment options beyond the standard steroid drops and Maxidex night ointment, but there are definitely some.

I did spend about 10 yrs total (not 20 thank goodness!), battling iritis attacks that morphed into a case of 'Chronic Iritis'. If you are being attacked in both eyes and the iritis is flaring back up barely after it has just quieted, and at four times a year, you must be nearing a 'Chronic' diagnosis yourself, I would guess.

There is actually a different method of treating chronic iritis that you might ask about. My Ophthalmologist was not familiar with it either, and so it wasn't until I finally asked him to refer me to an iritis specialist that my treatment changed. The specialist wrote back to my regular Ophtho, making the suggestion that I be kept on a very low dose of steroid drops as a way to prevent the huge flare-ups. This turned out to be fairly effective!

It is a simple idea really. Basically, instead of aiming to wean completely off, you taper down to about 3 or 2 drops only per day,... a 'maintenance' dose. With this method, I avoided having as many huge attacks as previously, the attacks I did have were less severe, and so I avoided the hundreds of drops it takes to bring down the big repeating attacks and thus lessened my overall exposure to the medication significantly. It makes a lot of sense if you do the math. It is for good reason (cataracts and pressure problems) that the standard is to use the least amount of drops needed ... and in chronic cases, the least amount overall is better achieved by not trying to taper off them and risking those severe attacks.

Because your iritis is clearly not being well controlled, a systemic treatment should be considered and unfortunately, most Ophthos leave the systemic approaches to the Rheumatologists (who are more familiar with these) so perhaps ? your Ophtho is just holding off until you get an official AS diagnosis. You could probably safely wait to see what your Rheumy's strategy might be... but continuing on as you are is not a good plan. Nsaids, sulfasalazine, or preferably a biologic med., anything that works to quiet your immune system, will help bring the iritis under control. It took Remicade for me to finally be iritis-free... I'm now four years and counting! (In the unlikely event that you don't end up being dx'ed with AS, whether a biologic would even be offered, or the risk/benefit would be worth it to you, is a decision you might need to weigh for yourself, in future.)

Not sure where you are in Ontario Mary, but if you are near to Toronto and want the name of our leading and brilliant iritis specialist in Ontario (maybe Canada!) then just send me a PM. You'll need a referral of course, from your Ophtho or Rheumy.

I hope you'll find the right treatment that helps you!
mig

You need an eye specialist that also handles autoimune disorders. In my case my eye specialist and Rheumatologist teamed up and cleared up my visions. The only problem with that approuch is the eye specialist only wants to use steriods and the rheumatilogist wants to use his methods. In the end steriods never had any affect except to damage my eyes and body. The rheumatologist finally put me on Humira and after 1 week it cleared up after 2 years of constant inflamation.

For long term you can try NSD but in the short term you are going blind you may not be able to wait for it's affects.

Tim

I have not read all of your responses but just wanted to share how we got mine under control. I had it chronically since 1970 until probably early 90's. My rheumatologist put me on Imuran and a chronic dose of Prednisone and my Iritis/Uveitis calmed down and has not flared again. I do go to the Optho very regularly for her to keep an eye on it.

The oral meds were the only thing that would calm mine. I have been off the Imuran for just over a year when I went on the Remicade (off of it now) but I have continued on a low dose Prednisone. The drs. agree that it is imperative to save my eyesight because my eyes are so beat up from the continual Iritis.

I hope you find relief soon. Take care of those peepers. We don't get a second chance.

Blessings.
Possi

Thanks, Kat. I have been wondering about Remicade and will call my rheumatologist this week to get an appointment to ask about it.
Mary

Hi Mig,
Thanks for the suggestions. I really like the idea of the low dose of drops on a more regular basis. When I do get a bad flare, I'm on the drops every hour for the first day, then every 2 hours on the second day, etc. That adds up quickly vs. 2 drops a day on a more regular basis.
I also liked your suggestion about the Remicade and will call the rheumatologist this week to ask for an appointment to discuss it with him since the ophthalmologist isn't willing to consider it.
I'll let you know what happens.
Mary

Hi Possi,
I appreciate your reminder to take care of my "peepers" since we don't get a second chance. Very true! My grandmother went blind when she was in her 40s. She was diagnosed with Retinitis Pigmentosa, but when I asked my ophthalmologist about her symptoms (she had peripheral vision only), he agreed that she was misdiagnosed and agreed that it was possible that she had gone blind from Iritis. This would have occured during the 1940s and 1950s (she passed away in 1986)and obviously the care she got wasn't very good.
I'll call the rheumatologist this week and ask for an appointment.
Hope you are feeling better.
Mary