My Story with Iritis and HLA B27

[Mirnee]

I am a 35 year old female who is HLA B27 Positive and suffers from Iritis. I had my first attack when I was around 30, and overall it lasted for about 8 months. During this time whenever we had it cleared up - a few weeks later it would reappear. I then had around 4 years with nothing, and was disappointed when it happened again. This time seemed like a walk in the park and 6 weeks later it was gone. Unfortunately 7 months later I had it flare up again ... and the only way to describe it is PURE FRUSTRATION!!!! Treatment each time has been similar so I will only focus on this latest case. When it first flared up, I caught it very early. We started immediately on Pred Forte 4x per day, Cyclogyl to keep the pupil dilated, and Maxidex ointment at night. Unfotunately this didnt work so the Pred Forte was increased to every hour while continuing with the rest. Unfortunately - this also didnt work. In the past Prednisone has been used to clear up attacks which we were trying to avoid.... so rather than going straight to that we used a subconjuntival Injection Tramcinolone. Unfortunately - not only did I react to this, it also didnt work which resulted in having focus on treating the infection as well with Chlorsig ointment. During this time we reduced the Pred Forte also - which quickly resulted in the flare up increasing again. Therefore, it wasn't long before we had to introduce the Prednisone. It was around this time when the Cyclogyl also stopped being effective in keeping the pupil dilated so we had to swap this for Atropine. At this point I was on Prednisone 40mg each day, Pred Forte 4x per day, Atropine 2x per day and Chlorsig 2x per day. This continued for 7 days. This seemed to work, so we began cutting back the Prednisone slowly. I did a week at 20mg, swapped back to Cyclogyl 2x per day, Chlorsig 1x per day and introduced Maxitrol 1x per day. After this the Prednisone went to 10mg, and Pred Forte 3x per day.... and after 2 days of this - it started to flare up again. I am now on week 9 since the original flare up and still on Prednisone daily, Pred Forte has been increased to every 2 hours, Cyclogyl and the various ointments. Each flare up seems to occur when I have my period. Not only is it frustrating that I cant get rid of it - the amount of steroids is becoming a joke. While getting rid of it is paramount right now - what are the options to control it long term??? We have chucked everything at this I think - and am feeling rather disheartened. I usually wear contact lenses so not only is the Iritis annoying - The fact that I cant wear those is annoying too.

[Mike Bartolatz]

first of all welcome to the group!

have you tried adding an NSAID like Cellebrex, Dolobid (difusinal) or naprosyn to see if they can help stop the inflammation? these are taken at prescription strength and you taper off the steroids both oral and topical VERY SLOWLY, it might take about six months but it is worth a try for HLA B27 related uveitis. if this doesn't work, move on to Methotrexate taken orally once a week or cellcept or imuran which stops the immune system from making the blood cells that are causing the inflammation.
you might also consider seeing an Ocular immunologist, list of specialist in the PATIENT information forum at http://www.uveitis.org
or tell me where you live and I'll recommend the best one nearest to you. (there is also a list of doctors trained by doctor Foster here in the USA on the PAST FELLOWS list whom I recommend most often) training and experience is everything with this stuff. regular ophthalomogists are NOT trained to use anything but corticosteroids in treating uveitis. the above list of doctors ARE trained as they only treat difficult cases of uveitis (iritis is also known as anterior uveitis).

use of steroids will lead to cataract formation and possibly glaucoma. the oral ones cause bone density loss and cause type II diabetes so get these things checked out. this is why we suggest a steroid SPARING approach to treatment. NSAID therapy works in about 70% of HLA B27 related uveitis patients so now that you have a more chronic form not responding to steroids well it is time to move on to other means of control of your immune system so that additional changes to the eye don't occur. the back of the eye can develop pockets of fluid under the retina called Cystoid macular edema (oedema in the UK). membranes can grow over the top of the CME resulting in pucker of the Macula (the part of the retina from which you see) causing distorted vision. new blood vessels can start growing that are very week and which burst bleeding into the eye called vasculitis. the optic nerve can be compromised by steroids as well as from vascularization. much of this can be prevented if you can get this stopped now rather than waiting until catarcts grow and you have to have them removed, or glaucoma occurs requiring surgery or epiretinal membranes grow requiring surgery to remove. Or the vascularization causes a detached retina etc.

not trying to scare you but to educate you about chronic HLA B27 related uveitis, how it is treated at major University Medical schools aroundthe World before it causes loss of vison.
I am partially blind from this stuff, I was never told about MODERN treatment methods which would have prevented my vision loss from steroid induced glaucoma, Cystoid macular edema, epiretinal membranes and optic neuritis.

If you are in the UK, there is a great online support group supported by William Ayliffe in london, the TOP specialist in the UK at Olivias vision.org

wishing you the very best,
Mike Bartolatz

[Mike Bartolatz]

Forgot to mention to buy some 'fit over sunglasses' online. they fit over regular glasses. dark green polarized ones cost less than 20 dollars US.
green ones for sunny days and brown ones for overcast days and while inside in bright lights and while on the computer. also get some yellow tinted driving ones for at night to cut glare of oncoming headlights. these glasses also work in foggy conditions to help you see.

with contact lenses, change teh solutions every 30 days as well as the case to prevent infections.
if you have dry eyes, get celluvisc lubricating gel type eyedrops for at night and a good quality lubricating eyedrops during the day, they can help prevent infection during the time you are using the steroids. steroids make an environment where bacteria can go crazy and dry eyes compromises the conjunctiva, the membrane that is a barrier to pathogens for the eye. dry eyes results in abrasion of the conjunctiva and leads to abrasion of the Sclera (white part of the eye) and the Cornea. this can then lead to ulceration and infection. buy the eyedrops at a pharmacy over the counter or online. do not buy the 'get the red out' eyedrops by mistake.

if you can get the eyes quieted down with NSAIDS taken at prescription strenght orally, when you get off the steroid eyedrops and dilating drops, you can then start using contacts again. just put a drop of lubricant on the lenses before you put them in.

also occlude the punctum, the drain for the eye located on the inside corner after you put the drops in. this will ensure that the drops don't go down the drain causing the terrible aftertaste. hold this for about a minute or so to let them be absorbed by the eye. wait 5 minutes between types of eyedrops too or you wash the previous ones out before being absorbed by the eye and surrounding tissues of the eye.

we need to get you off the oral steroids if at all possible. How much weight have you gained from steroids? how is your attitude?
they can make you hyper and angry and up all night too.

Take care,
Mike

[Mirnee]

Thanks SOOO much. None of these options have been mentioned to me, and I'll need to do some research as to be honest - I dont even know what some of these are.

I live in New Zealand, so if you are aware of anyone over here (or Australia), I would welcome to chance to see them.

In regards to the weight gain.... With the first two attacks I did gain weight. This time - if anything I have lost weight. I think this might be because I also have a lack of appetite as the drops effect my task bubs. I do however seems constantly thirsty (which is normal).

The attitude has been good and positive up until now. This last flare up did cause me to get a bit down - but old story .... There is always someone out there worse off than I am, and what doesnt break me will make me stronger.

[Mike Bartolatz]

make sure you get tested for type II diabetes. always thirsty is one of the symptoms as is WEIGHT LOSS when blood glucose levels are high.
steroids can bring this on. diabetes is also linked to uveitis BTW.

there are a couple of specialists in Australia, one is in Sydney, DR Mckluskey (sp)
contact information on the specialist list at http://www.uveitis.org in the PATIENT information section of the site.

depression can also be a result of any chronic inflammatory disease process and uveitis is this as well as things linked to the HLA B27 gene such as ankylosing spondylitis, reactive arthritis, psoriasis and psoriatic arthritis, ulcerative colitis and crohn's disease. first three have arthritis as major components but the last two can also have arthritis and GI complications. symptoms overlap with all of them.

if you have severe dryness issues those can be linked to sjogren's syndrome, any of the above things, lupus, sarcoidosis, systemic sclerosis etc

hope this helps,
Mike