Can symptoms of iritis (with HLA-B27) eventually dissipate?

[cheerfulgardener]

[i]The eyes have one language everywhere ~ George Herbert [/i]

Hi there-My name is Claudia - I'm appreciative of this web site, as whenever i have a "flare" of iritis, I turn to this website--as it makes me feel l less alone with the condition... ( .I don't know about you, but when you try to explain to your supervisor/acquaintance etc. why you have a dilated pupil or are not feeling up to snuff and you have this condition, people tend to squint-and squirm-or they just think (I'm just guessing here) that you are a hypochondriac!

After starting with arthritic pain in my knees (I have flares of that, and also in my elbows) in my mid-30's, I eventaully had the HLA-B27 gene test done, as my sister had discovered while having an acute flare of back pain, that she had this gene and I thought perhaps I should check. A # of years later, when I was in my mid-40's I developed irtis in my left eye--it was a pretty bad case because I wasn't aware of it and didn't know the signs - it took 2 months to get over that bout--a few years went by and I had another case, and have had two more since then and I am now 57 -- For me, it seems to be a Spring or Fall occurrence, which makes me think of allergies (my sister and mother have allergies) and, as well, has a stress element-I may not think I'm stressed (I work at my stress levels with massage, warm baths and aromatherapy, meditation, prayer etc.) but quite often on looking back, I realize that things were piling up on me at the point of the iritis flare. This present bout seemed to come on after an argument with my husband. So far I have only had it in the left eye -My sister has had iriitis 7 or 8 times but has not had a bout of it for 3 or so years, since she retired from her demanding job as a nurse. (My other sister hasn't been tested but has never had this condition - she has had her knees replaced because of osteo).

I'm just wondering - what do you think of the idea that this condition could eventually wane completely or "burn itself out" as we age? Is this a completley ludicrous? idea (I'm hopeful its not)

I usually know know right away with a sharp pain in the eye, and the sensitivity to light - and off I go to get the Pred drops - I always try to see the ophthalmologist so he can take a look in and give me an idea of the the severity of the flare. Right now I have two more weeks of the drops, waning it down over a period of time. I use the drops to dilate the eye before I go to bed at night because I really do believe it is imperative to relax the eye to let the iirtis heal.

I am a medical transcriptionist so you can imagine that it is hard to work when you have a flare- I usually wear a patch as the glare bothers the eye and I think the eye strain keeps it from healing.

Also, does anyone find that the Pred drops make them lethargic and out of sorts? I am an active individual, but I find that I just want to lie down and cover my eye with my lavender pilllow and just do nothing. I aThat makes it hard I find - especially in the Spirng when we are starting up our greenhouses and I want to get out and about.

Anyway, I just wanted to say HELLO and perhaps someone out there would like to chat or share their iritis story!

Have a good day...and hope you are iritis-free!

[mtbargeman]

Hi, Claudia!

Nice to meet you. No, Irits does not 'burn itself out', but under-treating it will burn out your vision. Are you on meds for your HLA-B27 arthritis? Iritis is directly related to this. Proper meds, rest and diet are all very important in getting the disease to REMISSION- no flares, off all steroids, no residual inflammation.

Under treatment of Uveitis- I have a different type- made me legally blind. I do not recommend wearing a patch. The reason for this is because wearing a patch can give you a 'perfect double image' (the only way I can describe it) of everything, and make eyestrain worse when you take off the patch. I screwed that up once, and it was a while before I saw 'straight' again. Your depth perception is also messed up when you are wearing the patch, and that makes it easy to walk into stuff, fall down stairs, etc. This can be dangerous.

Rather than wear a patch to transcribe, try wearing a visor to shield you from the glare of the overhead lights, and reverse the colors on your computer screen so that the background is black and the letters are white. I work that way all the time, and it reduces eyestrain sharply. If you don't already wear spectacles, try getting a pair of lightly tinted glasses from the accessories section of your local dollar store. I use them often. My favorite color to use is green, as that seems to be the most soothing color to my eyes. Yours might be pink or light blue or gray or even yellow or purple. Experiment with the different colors in the store til you ind one that makes the overhead lighting less painful for you.


Yes, most of us find that trying to explain our precarious positions to others gets us a look that says we are not right in the head, somehow. There is a printable guide found somewhere near the top of this page that might help in explaining to co-workers andfamily, etc. Don't expect it to be easy to get the accomodations you ned to do your job without a Dr's order. All you have to do is ask your doc for this note, and then things should improve at least a little. Light sensitivity is sometimes enough to bring down anelephant, in my view. Don't feel guilty about wanting to crawl in a dark hole and pull it in after you. As far as working outside, welll...SOme days you can, and some you can't. It is aggravating as can be, but you have to take care of yourself, or you won't be able to take care of a plant one, or even a guppy.

I hope I've helped a little.

Good Care,

Mary

[Mike Bartolatz]

welcome to the group!
HLA B27 disease is triggered by a pathogen, the immune system responds to it and in most instances irradicates this pathogen but the immune system continues to make the white blood cells that correspond with the HLA B27 gene on your cells thinking that they are the 'pathogen'. the steroids can stop the attack but then an inciting agent such as a pollen or other allergen causes the immune system to make certain compounds which also attack the eyes by mistake. frequently this is the inflammatory cytokine IL17 for example which is pro inflammatory and which can be found in the inflammatory process of uveitis. molds can cause this too as can other pollens and bacteria, viruses, yeasts etc.
some doctors feel that this response will 'burn out' over time as we age. for whom this will occur is impossible to predict and just as many people in their 60's get uveitis for the first time as someone in their 20's from what I have been told.
Hormonal changes can also cause the immune system to respond differently. this is the case with 'stress' related uveitis which can also illicit an IL17 response allowing new inflammation to occur in the eye, joints etc. even becoming overweight can cause another type of inflammatory substance found in fat tissues called adipokines to be secreted which in turn can cause IL17 to be produced and which have caused osteo arthritis of the knee to occur. they can also cause type II diabetes to become activated. so, allot goes into possible causes of recurrent uveitis.
the main thing is to stop the inflammation and hopefully prevent it from occuring again. for some with only a flare up once a year for a couple of weeks, the opthalmologist might elect to continue to monitoring damage inside the eye before initiating a steroid sparing approach to treatment. if the re occurances become more frequent or if they become chronic, they would then start a steroid sparing approach to treatment.

the dilating drops are used to help prevent the iris from sticking to the lens. if not used, this is a potential risk which can premanently cause the iris to become mishapen and it can cause pain inside the eye because the muscle that opens and closes the iris cannot relax.

I hope this helps,
Mike

[cheerfulgardener]

HI Mike--Thanks for your reply!! and all the information, espec the whole mechanism of HLA-B27-and inflammation etc. - Its a mystery!! -I'm sorry to hear about your blindness- its a frightening thing, I find, and I fnd the iritis really makes me tired-and/or irritable - -or, the Pred drops, not sure which. I will be "looking in" on this support board and it was nice to meet someone else as well!! Have a good day Mike and thanks again---take care.
Claudia

[cheerfulgardener]

Hi Mary, Thanks so much for your note--and all the info---espec about the glasses etc. I just find the whole thing to be so wear-i-some--I guess because I have a fairly active life, working full-time, etc. and at this point in my life, just wanting to enjoy the wind in my face (like a dog LOL) - but even wind sometimes seems to aggravate symptoms with me. I always seem to have some sort of inflammation going on -whether its my knee, or neck or elbows - but sometimes there are lapses and and sure as heck, I'll turn around and think, "gee I seem to be in a good place right now wtih my joints", then "bang" I get iritis - I do find it is very much related to stress - I have a thermometer for stress and (I'm pretty thin-skinned, sensitive etc.) when it goes over the lip of the bottle, I suffer with fatigue, depression, etc. Its a drag but what can you do?

Where do you live Mary? I reside in the countryside outside of Ottawa Ontario -- we had alot of stress for about 5 years wtih an accidental 700 litre oil spill on our property and gardens, my husband slipping into a deep dark depression (and me following along) but thankfully things have improved and life is good again--

Thank you again for your thoughts and I hope to chat again soon!


[quote="mtbargeman"]Hi, Claudia!

Nice to meet you. No, Irits does not 'burn itself out', but under-treating it will burn out your vision. Are you on meds for your HLA-B27 arthritis? Iritis is directly related to this. Proper meds, rest and diet are all very important in getting the disease to REMISSION- no flares, off all steroids, no residual inflammation.

Under treatment of Uveitis- I have a different type- made me legally blind. I do not recommend wearing a patch. The reason for this is because wearing a patch can give you a 'perfect double image' (the only way I can describe it) of everything, and make eyestrain worse when you take off the patch. I screwed that up once, and it was a while before I saw 'straight' again. Your depth perception is also messed up when you are wearing the patch, and that makes it easy to walk into stuff, fall down stairs, etc. This can be dangerous.

Rather than wear a patch to transcribe, try wearing a visor to shield you from the glare of the overhead lights, and reverse the colors on your computer screen so that the background is black and the letters are white. I work that way all the time, and it reduces eyestrain sharply. If you don't already wear spectacles, try getting a pair of lightly tinted glasses from the accessories section of your local dollar store. I use them often. My favorite color to use is green, as that seems to be the most soothing color to my eyes. Yours might be pink or light blue or gray or even yellow or purple. Experiment with the different colors in the store til you ind one that makes the overhead lighting less painful for you.


Yes, most of us find that trying to explain our precarious positions to others gets us a look that says we are not right in the head, somehow. There is a printable guide found somewhere near the top of this page that might help in explaining to co-workers andfamily, etc. Don't expect it to be easy to get the accomodations you ned to do your job without a Dr's order. All you have to do is ask your doc for this note, and then things should improve at least a little. Light sensitivity is sometimes enough to bring down anelephant, in my view. Don't feel guilty about wanting to crawl in a dark hole and pull it in after you. As far as working outside, welll...SOme days you can, and some you can't. It is aggravating as can be, but you have to take care of yourself, or you won't be able to take care of a plant one, or even a guppy.

I hope I've helped a little.

Good Care,

Mary[/quote]

[mtbargeman]

HI, Claudia!

I live in Virginia, USA. Sorry to hear about the oilspill. HAve you tried a little amber or cedar incense, or lavender or violet when you meditate? I find that the scent is helpful in getting me to a meditative state and in reducing stress. I'm glad I could help a little bit, anyway. I am not as technical as Mike. For the most part, I am good at getting folks to understand how bad it's going to suck if they don't get treatment, and in coping skills. I have a thermometer for stress, too. That is why I suggested the incense. It's not a cure or herbal remedy, but I find it helpful in relaxation technique.

Feel Better,
Mary

[Mike Bartolatz]

mary,
you are good at the techincal stuff too! I've just been doing this for over 12 years now so my knowledge base is a bit greater than yours. your help in all aspects with the support groups is appreciated BTW. I can't thank you enough for helping me out as occasionally I need to 'get away' once and a while and I know that the boards are in competent hands while I am away. you also re inforce my message about losing vision unnecessarily to uveitis and OID and your loss is much more than my own. I sometimes wish I could take on your 'loss' as you are just entering the prime of your life and mine is one the downhill slide. I know that should anything happen to me that you will be able to step in and take over.

thanks again
((((((((((((HUGS))))))))))))))))))
mike

[mtbargeman]

Mike-

You are so kind. I was at a little bit of a low point. Your kind words made my day, friend. Everybody's life sucks to some degree. How much we LET it suck, however, is entirely up to us. Sometimes, it's going to be worse, sometimes better. All things considered, I am quite lucky to be where I am now. I could have been mentally retarded from being three months premature when I was born. Or never gotten to see or hear at all. Instead, I was gifted with a quick mind, a sense of humor, and I have a wonderful family and friends who love me just like I am. DO they wish certain aspects of my life could be different? I'm sure. Sometimes, I do, too. I'm only human. But too much wishing for things we can't have or change is a waste of precious time that we could spend loving and helping others, and doing the things that make us happy.

I was more than glad to help out here while you took a break. I enjoy coming here and helping out. It gives me a sense of purpose, and usefulness. It is one of the things I do that makes me happy.


(((((((((HUGS)))))))))

Mary

[Mike Bartolatz]

HLA And other genes related to ankylosing spondylitis, the enteropathic arthropathies, crohn's, psoriasis. autoimmune thyroid disease. breast cancer, poss. SLE and MS and Behcet's disease



http://parsplanitisforum.yuku.com/topic/28

here are some newly discovered genetic links to Ankylosing spondlyitis and other autoimmune disease processes
recently the ANTXR2 and IL1R2 genes were discovered and the association with IL23R and ERAP1 (formerly ARTS!) genes were confirmed so in addition to HLA B27 the following genes are linked in anglo american and european persons:

HLA B27
ANTXR2
IL1R2
IL23R
ERAP1 (formerly ARTS1)

[Mike Bartolatz]

HLA B27 sclerouveitis with significant hearing loss: COGAN's Syndrome
http://parsplanitisforum.yuku.com/topic/145

mary.
I was thinking of you when I thought of this article

mike

[Mike Bartolatz]

Renal involvement in Cogan's syndrome is included in this search
http://www.google.com/search?sourceid=n ... s+syndrome

Cogan's is also seen in other HLA B27 disease

[mtbargeman]

Mike-

Am making a list to take to Dr. and ask about. If Medicare won't pay for them- it would not pay for HLA-B27 test- I have to find out how much they cost. May have to have one every other month or something, just to rule stuff out. These tests can be quite expensive, and Medicare is quite stingy, even tho we are forced to take it. I wish I'd never gone on SSD. Wish I'd kept working at something. Anything. Too much of my freedom and my life has been given up because of this.

Mary

[Mike Bartolatz]

I can empathize with you Mary as I too am on Medicare and Veteran's Administration medical which limits even blood monitoring for my diabetes, test strips etc.
I have no Idea what these tests cost but I do know that many of the tests are becoming less expensive with new 'chips' being developed that test for many things at the same time.
it all becomes depressing when one has many things going on without an explanation and medical insurance won't pay of the tests we need.

wish you the best,
Mike