Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group iritis /uveitis

I started in 1970 with iritis constantly, first in one eye and then the other. We treated it constantly and I had early cataracts from it. I finally ended up on Imuran which holds it. When I went ot Mayo, they told me by all rights I should have been blind years ago and that I am really getting good eye care. That made me feel better about my drs. even though I already knew they were good. I just hate to see anyone not stay on top of eye care. I can't stan the thought of not being able to see. My hubby is blind in one eye and had a retinal problem this last year in his good eye and it was kind of like a bubble and in broke up in to these huge floaters and they are in his way all the time in his only eye. He really stays concerned about taking care of that eye and has to stay on top of it even more now since he is more of a candidate for a retinal detatchment in that eye. He also has a fungal disease in his eyes; what made him blind in the one and it is dormant in the other but could rise up at any time.

Oak, you already have lost your leg use, do what you can to keep your eye use.
Hugs.
Possi

IMHO - YES! You should still go!

Sue

Thanks, Sue and Possi. My eyes don't get red either. I thought it was just unusual pain in my eyes, but at everyone's insistence a few months ago, I went and got it checked. It was anterior uveitis. I followed the doctor's orders on how many drops/day and how many days of treatment. It just seems that it keeps coming back. Some days it doesn't bother me and I think I should just forget about seeing a doctor again, and then I'll have a few days where it hurts quite a bit. I still have drops left from the first time, so I just treat it as needed, but that probably isn't the best idea based on what I'm reading here.

Merlin, it sounds like exactly my case! Like I said I have been in an iritis flare since July 06. When it hurts [sometimes I can feel it coming on when I touch the eye socket. I can usually tell in the morning when I wake up what kind of eye day I am going to have] I up my drop dosage but I make sure I continue on this upped dosage for at least one week before I start tapering down. I was able to stop the drops completely in October [after being NSD for just over a month] but in November it was back and I have been treating it with the drops ever since.

I think for some of us, the iritis is not going to go away. My eye doc told me I would be needing cataract surgery by the end of a year. He said that the cause and the cure causes the cataracts! So both the steroid drops and the inflammation will case cataracts. He wants me to be able to taper off the steroid drops but I just can't see that happening.....

Are you going to go and see your eye doc just so he can check out your eye and evaluate the condition for you? I will be very interested to hear what he says.

Cheers,
Rita

James, 12, Adrian, 10, Elisabeth, 3, my babies!

No, you need a dr. to stay on top of it so you will know when it is getting better and when and how to taper and how long to be on the meds, etc. It is a serious thing and nothing to mess with. I have been on the oral meds for it for at least 10 - 12 years. The Mayo drs. told me I would probably have to be on the Pred and Imuran the rest of my life. As soon as I stop them, the iritis just jumps up. I have scarring from it and I don't want anything worse than that.

Let your drs. stay on top of it. Hope Oak will too.

Blessings.
Possi

Hi Rita. I had one cataract surgery some years back. The other one will happen this year. I take oral meds to take care of my iritis. I take Pred and Imuran. The drs. tell me if I don't keep it down that I could go blind. I have scarring. Also, have they ever given you injections? There has to be some way to get you off those drops. I used to be on them a lot. When I would be really bad, he would have me use them every 10 min. for 2 days and then go to every 30 minutes for 3 days, then every hour for 3 days, and on and on with him evaluating it at least weekly to see how it was doing. I had it to "stick" once and had to be hooked up to an IV in case I needed other meds because they were really pouring the dilation drops to me to get it loose. That is when the scarring happened. The dilation drops give me tachycardia and raise my bp.

How are you? Haven't talked to you in a long time.

Hugs.
Possi

hi there yes you should get your eyes checked asap its nothing to mess with. belive me i have been running to the eye doctor every mouth for along time. alot of things can happen to your eyes. so save your eyes and get in there as soon as u can.

Possi is right! Please, please, PLEASE THROW AWAY your old eye drops IMMEDIATELY!! You could be severely damaging your eyes!!!
Once any eye drops have been opened they should be discarded after a month, especially the steriod drops!!

Please go back and see your optho and/or your rheumy. (Mine worked together on this problem for me as it wouldn't go away.) You really should discuss with your rheumy the possibility of going onto a DMARD, (like MTX) or a TNF, (such as Enbrel) or both, if necessary as the problem with your eyes is systemic, and has been going on far too long. (I only recently found out that apparently uveitis/iritis only ever happens in ppl with autoimmune problems. I think it was from someone here?)
Obviously the drops are not doing the job properly, and as Possi and I have said, could be making the problem worse!

Sue

Dr. Steven Foster is a leading specialist in Cambridge Mass. and has dedicated his life to the treatment of Uveitis.

He is online and has a forum. He is also boarded in Rheumatology.

He trains Doctors that go to other parts of the country and it would be good if you have one in your area.

You can find out from them where they are.

The treatment for Uveitis can cause steroid induced glaucoma. My husbands wouldn't tame down and he has operations for implants so he will not need the meds for that.

Both can make you blind.

A specialist is really the best way to go.

~Kewanee

Hey Southern Belle! Guess what, last night I had typed out a nice long chatty reply to your post and when I was just about done the flippin' power went out!!! I lost it all....no reason for the power to go out either, sometimes that just happens when you live out in the boonies!

Anyway, everything is going pretty well here right now. For most of April, most of us in the house were on antibiotics to ward off a bacterial infection [it was mostly just a really bad viral infection but in our family 'cause of Elisabeth's Cystic Fibrosis when anyone gets sick with anything related to respitory or digestive {so that means anything, really} systems we usually take antibiotics...so after 2 doses of antibiotics everyone seems to be back to normal. We had a really bad cold/cough/flu type sickness for 3 weeks. Because my GP and I were on top of it we managed to keep Elisabeth out of the hospital. Now that I have been dealing with her CF for 3+ years it is alot easier to see signs of trouble coming and to act before infection sets in to her lungs.

Actually this infection made me think my NSD wasn't working, I attributed my aches and pains to my new liver pills {which I started same time as everyone's infection started} containing starch. So I was pretty bummed out thinking all the good work the NSD had done me would be slowly going down the drain as I have to take the liver meds for the rest of my liver's life! But I tested the liver pills the other day with my iodine and they tested negative for starch, yah!! So that made me happy. I realized that the antibiotics I was on were probably starchy though. So now I am finished with antibiotics and have been feeling much better.

And actually, I had my liver levels checked after being on the liver meds for about 5 days to 1 week, and 2 of the levels were down, only 1 was high. So that is a great improvement, my GP was pretty happy

Now, if I could only get rid of this dang iritis! I am really starting to get tired of it. These couple of new threads with folks wondering about iritis and going to see an eye doc have been good posts though. When I started coming to the site there wasn't that much on it about iritis, I did read as many old posts as I could. Very good information has come to light with these current posts.

Thanks to you and Sue---I now realize that the steroid drops have a shelf life. I thought as long as the bottle was still sterile [even opened, but sterile] they would still be effective. Nope, throw them out after a month, good advice. Luckily for me my eye drops have always been used up in a month so I haven't been using old drops.

I am hoping that not being on the starchy antibiotics will help my eye too. The NSD has always helped the eye but I was only once able to be completely free of inflammation [and the eye doc did say it was completely free, and I did tell him about my NSD]. But since that time {I believe I didn't taper slowly enough off the drops?....} it has come back and never left, it usually is just there at a slow simmer but so far in April it has been quite bad. I've been to see the eye doc twice in April and the second appt did go better, but I think since the second appt [he told me to go to 1 drop of atropine and 3 steroid drops, down from 2 drops of atropine, and 4 steroid drops] and the taper down of the drops that it is worse again! It is very frustrating. {And yes, Possi, I did have the injections done back in Feb or Mar of 2005, my first iritis flare started in Dec 04, and I still have nightmares, I was so scared....I am such a wimp}

Well, I better get this posted before my power goes out again!

Cheers,
Rita

James, 12, Adrian, 10, Elisabeth, 3, my babies!