So Frustrated

[carousel301]

I guess I will start with my story. This is my third bout of iritis. This bout started on October 3rd. As usual, I just woke up with it one morning. I had some Pred Forte left from the previous bout and started using it every 2 hours. The iritis was not getting better so I went to my opthamologist on October 11th. He told me I had done the correct thing, but bump the Pred Forte to every hour. He also started me on a dilating drop twice a day because my eye was not dialating. I used those drops for four days. The next day when I woke up I could not see anything. Everything out of my left eye was very hazy and blurry. I could not see my hand in front of my face . I could tell where light sources were. I call the opthaomologist on October 12th and 13th as I was very concerned about not being able to see. They assured me it was fine and that Pred Forte mixed with dilating drops would do that. I went to see the opthamologist again on October 15th. The iritis or my vision had not gotten any better. I could not read the eye chart at all and could only see hand motions right in front of my face. He referred me to a specialist in Birmingham, Alabama, Dr. Russell Read. I went to see Dr. Read on October 19th. Dr. Read had blood work and x-rays done to see what is causing the iritis. He diagnosed me with lateral and bilateral uevitis (I think that is correct). Dr. Read told me the reason I could not see out of my left eye is because "debris" has gotten behind my eye and stuck in the "gel". He stated it should gradually go away. If not he would perform surgery. He kept me on the Pred Forte every hour and to return to my opthomologist in two weeks and come back and see him in six weeks. Around October 23rd, I developed floaters in my left eye. I returned to see my regualr opthomologist on October 30th for my recheck. He told me that he did not see anymore cells in my eye and I could start weening off the Pred Forte. However, I was very frustrated because he did not answer any of my questions that I had. At that time, my eye was still light sensative and very hazy and I still had the floaters. Although I could see much better than previously. He also told me I had a cataract but he wasn't sure how he was going to treat it due to the iritis. Once I started weening off the Pred Forte, the light sensitivity started to deminish as did some of the hazyness. I was down to taking the Pred Forte every 6 hours. On Sunday night, November 4th my eye started hurting again. On Monday, November 5th, I had light sensitivity with pain and the hazyness was worse. I called Dr. Read's office as I do not feel my opthamologist is very helpful. He told me to bump the Pred Forte back up to every hour and come see him in two weeks. His nurse also told me the test restults showed I was HLA-B27 positive. She said Dr. Read would explain it in detail at my visit.

This is the first time I have any symptoms this long. The other two times it had it for a few weeks and the Pred Forte took care of it. Is it normal to be weening off the Pred Forte and the uevitis to flare up? Is any of this normal for that matter?

Thanks for your input!!

[Mike Bartolatz]

With HLA B27 positive uveitis, it can be difficult to get under control. it might return frequently or it might not, it is impossible to say. now that you have autoimmune uveitis, he may decide to add an NSAID orally to see if it can help stop the inflammatory process. this can take a few weeks to know if it is helping. Dr Foster uses Cellebrex, dolobid or naprosyn which are anti inflammatory medications in his patients with HLA B27 related uveitis. it works in about 70% of them. if it doesn't work, then he moves on to DMARD drugs such as Methotrexate, Cellcept or Imuran all what are called Disease Modifying Anti Rheumatic drugs.

yes it is frequently the case that weening off the steroid if done too quickly can allow for the uveitis to return. usually the inflammation is in only one eye at a time however, ping pingponging between eyes. when One has the HLA B27 antigen present governing the immune response.
do you have any syptoms of arthritis, rashes on your skin, GI distress such as IBD? these things are also linked to this gene and have uveitis as a potential complicating factor.
a very slow taper off of the pred forte may be needed. in some cases, injections of steroid to tissue SURROUNDING the eyes is need to quell complicated uveitis or oral steroids.

DR Russel Read is a highly regarded expert in the diagnosis and treatment of uveitis. make the trips to Birmingham as it seems your local doctor isn't up to speed on this type of treatment.

I hope this helps,
mike

[carousel301]

I do not have any syptoms of arthritis, rashes on your skin, GI distress. I am relatively healthy or thought I was until this bout.

Thanks so much for your help. I really don't know anything about uevitis other than what I have read on the internet. It is a lot to take in and understand.

Thanks again.

[Mike Bartolatz]

Ask any questions you may have! that is why I'm here to empower you through knowledge about this stuff.
no question is to simple or stupid to ask BTW. none of us knew anything at all about this before we developed it. there wasn't an internet when I got it back in 1966 and the only treatment then was oral steroids. I new almost nothing until the internet was developed and I got my first computer back in 1998. that is why I have helped at this and other sites for 14 years now helping people to understand what this is all about.

wishing you the very best,
Mike

[carousel301]

I think I have now developed dry eye. I am not sure, but from what I have read on the internet it sounds like it. My eye aches, feels like something is sticking in it and stings. My eye hurts more as the day goes on. I have been using Thera Tears, but they do not seem to help. Is there anything else I can use to help with the dry eye? Is it normal to develop dry eye? I would assume it is from the Pred Forte since I have been on it every hour for a month.

[Mike Bartolatz]

this can occur, I have it as do many others with uveitis. the steroid eyedrops do have preservative in them and it can cause allergy in some individuals. you might try a lubricating eyedrop of the gel type, like Refresh Brand Liquidgel. I use this at night as my eyelids will stick to my eyes from dry eyes.
get in for an evaluation for dry eyes. the surface of the cornea and the sclera can become compromised by the abrasion between the eyelids and the conjunctiva. this can lead to infection so this also has to be ruled out.
if it is allowed to continue without additional treatment, it can lead to damage to the cornea and sclera. loss of vision can occur.

right now keep putting in the theratears hourly if needed until you can get in to see your opthalmologists.
other options to consider down the road are plugs to keep fluid from going down your drains and the topicical eyedrop Restasis if this continues once you are off steroids, I have punctal plugs BTW and they work great. I use less eyedrops to keep my eyes hydrated. REstasis didn't work for me. it is a prescription non steroidal drug to treat inflammation of the lacrimal glad which produces the fluid part of the tear film.

Hope this helps,
Mike

[carousel301]

Thanks Mike! I called Dr. Read's office and they also suggested I try the gel. I am going to try and get some today. They also suggested I put the Thera Tears in five minutes before I put in the Pred Forte. I have done that and I can't tell a difference. I have an appointment with Dr. Read next week, so hopefully I can make it until then.

Thanks again!

[Mike Bartolatz]

The gel will blur your vision so don't drive with it in. if you have a Costco near you, they are about 1/2 the price for lubricating eyedrops. you don't have to be a member to use the pharmacy area BTW. talk to him about Punctal plugs. if you have granulomas forming on your Conjunctiva, have him biopsy them to look for Sarcoidosis (rare but possible) if they are, then the oral drug methotrexate can treat both the uveitis and the underlying cause. otherwise Restasis could be tried (cyclosporine based eyedrop).

Wish you the best,
Mike