Uveitis

April 23, 2002

Kathy, I've been fighting a constant battle with uveitis (both posterior and

anterior) since 1986. The only time I ever had some relief (for about 3 1/2

yrs) was when I started on Plaquenil. It is my belief and that of several of

my doctors, that our body gets used to some of the drugs we have to take and

we go back to square one. I've heard this happening with Methotrexate, too.

I've been trying to control a current episode of iritis for 2 years now. On

three medications at present (Pred forte 1% 3 X day, Timolol 0.5% 1 X day,

Alphagan 0.2% 2 X day). I developed high eye pressure (in the 30s) from the

pred and inflammation. Every time I try to decrease my pred (which is every 4

weeks)...I have the same symptoms you describe. I start dilating and increase

my pred until I get to the eye doctor. He usually finds a few cells still

there and a slight flare. I have two doctors...one in NC and the other in

Florida...they both have said I will most likely have to deal with this

situation and be on the meds for life. I'm not satisfied with that...and I

believe I'm going to have my Rheumy put me on Methotrexate...just so I may

have a year-few years of relief from those nasty drops, plus the fact that

these meds are very, very expensive. Both my eye doctors have said the

methotrexate wouldn't do me any good...but from some of you on the list have

said....I see, it gives us some time of being free of the uveitis, even if

temporarily. The vision problems you mentioned do not cause a flare...but the

vision loss is most likely from your constant and consistant flares. This has

happened to me. My vision gets better sometimes after I get the flare

undercontrol, but overall, my vision has decreased rapidly over the last ten

years. I have to get new Rx for glasses all the time. Even with an implant

for cataracts a few years ago, my eye sight is diminishing. I hope you will

have better luck than I have had. I wish I knew the secret. The treatments

for uveitis have not changed for decades. I have been " eyeing " the following

web site...and may make a visit to see Dr. Jaffe since we live so close to

Duke. Tell me what you think about this new experimental therapy/treatment.

www.dukeeye.org/research/profiles/jaffe.html

Best regards, Connie (granny) AS/IBD/Uveitis

April 23, 2002

Below are some better sites about the research at Duke U. The last link is a

comment on the use of methotrexate for some forms of uveitis. I believe I'll

print it out for myself and give it to my opthalmogists.

http://www.vrs-online.com/abstracts/14_99.html

http://thirdyear.mc.duke.edu/faculty_labs.asp?currentPage=1 & range=ijkl

http://www.acad-ophthal-int.org/VirtualMeeting/DRG/methotrexate.htm

Connie (granny)

April 23, 2002

Kathy,

A couple of things come to mind with your situation with your eye. If

you are experiencing pain, you shold go to see your opthalmologist to

check you out. Pain is sometimes only present at the beginning of a

flare and, even without experiencing continued pain, your flare could be

getting worse. Also, stress is a big factor in uveitis flares. If

you're busy during tax season and are under more than a usual amount of

stress, you might experience a flare. Usually if a flare is caught and

teated early, it can be brought under control. Good luck to you.

Judi - AS uveitis HLAB27 +

March 29, 2003

Hi.... been a long time since i contributed anything to this group, but i do

have a question. last year i had my first experiences with uveitis, and had

it for at least 3-4 months of the year on and off. this year, i've woken up

in the morning a couple of times and felt the sensitivity in my eye

associated with uveitis, took a few drops of predforte that i keep with me,

and it seemed to disappear almost right away. no need to even see a doctor.

other than that, i've had no problems with my eye.

my opthalmologist in canada had told me that in many cases of RS, the

uveitis can burn itself out and it won't recur. i think it's too soon for me

to say that but has anyone else had such experiences and been told the same

thing by their specialists?

warmest regards from thailand ~ james

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March 30, 2003

,

I urge you to not self-treat uveitis. In chronic cases some patients do

not feel pain anymore. Please see your opthalmologist. It is the only

way to know for sure whether or not you are flaring. Untreated flares

can mean serious trouble. If you're anything like me, you are tired of

visiting the doctor and avoid it whenever possible! This, however, is

too important to ignore.

Take care,

judi

March 31, 2003

,

Any time you feel the need to use pred forte, it is very important to get in

and see an opthalmologist. You may have chronic low-level inflammation in

your eye that must be treated to prevent permanent damage. One way to

determine whether your uveitis will likely become a chronic problem or go

away might be to get tested for the HLA-B27 genetic marker. I think it's

less likely to " burn out " if you have that genetic marker. Good luck to

you, and please go see an opthalmologist as soon as possible.

Regards,

Janet in San Francisco CA USA

April 2, 2003

I'm not at all sure what uveitis is...I am finding it harder to see these

days---quite blurry and my eyes feel gritty and burn and often tears will

come up during very unfortunate times like DRIVING??! or trying to take a

picture. I had to film a video the other day for class and I actually had

to stop and wipe my eyes before I could go on because the tears were just

pouring down my face. My husbands says my face looks puffy under my eyes.

I don't know if it is reiters-uveitis--sjogrens, or allergies. I've never

had allergies like that before though Also I had the beginnings of

cataracts a year ago and I need to get to the optometrist again but have

been putting it off as i am SO busy with school and I get worn out easily

so when i'm not working on stuff I'm regaining my strength.

Any thoughts on what might be happening?

Liz

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April 2, 2003

Dear ,

I hope I didn't come across as " scolding " you about your eye (the mom in

me takes over occasionally, however, I don't mean to sound like it!).

My experience with uveitis has been rocky, to say the least. My first

flare was in my right eye about thirteen years ago. To make a very long

story short, that eye is now totally blind. Six years ago, the left eye

began to flare. As a result of the treatment (pred forte drops,

specifcally), I developed a cataract in that eye and spent six weeks of

this summer legally blind in that eye (legally blind WITH glasses - that

is uncorrectably legally blind). Thanks to an excellent opthalmologist,

more than a little luck, and the grace of God, my cataract surgery was

succesful and my vision in my " good " eye has been restored. The eye has

been quiet for some time and I am very thankful.

I realize that, being only an hours drive from the Cleveland Clinic

gives me an advantage over you in Taiwan. Still, I hope you will seek

the advice of an opthalmologist if possible. Uvieitis is a tricky

condition and predforte can cause a rash of complications.

My bout with blindness this summer was a real wake up call. I realized

how close I was to losing something forever that was precious.

Best of luck to you.

judi

Clost wrote:

>

> judi.... thanks for your concern about not treating uveitis myself. perhaps

> what i was feeling wasn't uveitis at all, as i've never seen it disappear

> that quickly, particularly last year when i began to be afflicted by it. the

> thing is that in these most recent instances, after a drop or two, i had

> none of the pain and there was no blurry vision to begin with, making me

> think that it wasn't in fact uveitis again. who knows..... at any rate, i am

> tired of seeing the doctors, and now that i've just landed in taiwan to

> work, seeing a doctor will be a bit more difficult.

>

> take care ~ james

>

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June 15, 2003

I've never had it in my right eye only the left, thank GOD! Hope you won't

have to deal with both eyes. Kathy from WI

June 15, 2003

,

I, too, only have a " good " right eye. My left has peripheral vision, but little

straight ahead vision. My eyes are so extremely sensitive to bright light that

I have worn tinted glasses, or more recently photo-grey lenses that darken as

the light brightens. Otherwise I wouldn't be able to function outside or in

places with extremely bright lights. Bright lights actually cause extreme pain,

especially in the left eye. I've suffered that condition since birth.

What happens when both eyes are inflamed, you ask, or when the " good " eye is

inflamed? It's a terrible condition that essentially stops you in your tracks.

Most of my ReA related eye problems have struck the left eye presenting minor

difficulties. But, a few times I've been totally " blind " when the problem

occurred in the right eye, or in both eyes simultaneously.

Steroid drops have worked best, along with a systemic steroid shot. I can no

longer take these drops due to the rise in interocular pressure that they now

cause. If you are using steroid drops in your eyes your doctor should check

your eye pressure frequently. Alternate medications are non-steroidal

anti-inflammatory drops which do help but do not have the quick action of the

steroids.

Keep your doctor informed of your eye symptoms and ask for an immediate

appointment when you discover new problems. Quick treatment is the best way to

avoid complications.

Ray Neal, moderator

December 5, 2008

Hi Bonnie.

I get it about every 6 months or so. Sometimes worse then others. I have had

injections and been on predforty so much that I have an immature cataract in my

right eye. I have AS and am HLA B27

+. I would be happy to share with you if you are interested.

________________________________

From: bonnieparlin <bonnieandjerry177@...>

Sent: Thursday, December 4, 2008 3:26:50 PM

Subject: uveitis

Is there anyone on this board that also has uveitis??

I'd like to compare notes.

Thanks,

Bonnie

December 5, 2008

Dear Bonnie,

I am thankful that at this time I do not have Uveitis however, the very

first case that I had ever had I had Uvietis in one eye and just Iritis

in the other. Go figure. Same thing, just affects the eye diffrent

areas.

Barbara

December 7, 2008

Hey,

What else do you have? I was diagnosed with psoriatic arthritis last

year, 7 years after my first uveitis flare up. In 2004 I lost the

sight in my right eye. To make a long story short, I have since had

4 surguries on the eye: retinal detachment with schleral buckle and

gas bubble, caterac, yag, and ahmed glaucoma shunt implant. Recently

I have been going through some med changes and would like to know

what has worked or not worked for you. Currently I am on Humira

biweekly, predforte eye drops, and last month I switched from

methotrexate injections to leflunomide (arava).

Any input would definately be appreciated.

Thanks,

Bonnie

> From: bonnieparlin <bonnieandjerry177@...>

> Subject: uveitis

>

> Date: Thursday, December 4, 2008, 3:26 PM

>

> Is there anyone on this board that also has uveitis??

>

> I'd like to compare notes.

>

> Thanks,

>

> Bonnie

>

December 7, 2008

so it sounds like the meds that you are on aren't doing the trick.

Are you on any immune suppressants or biologics? About the caterac,

you should actually hope for a caterac. Sounds silly for me to say,

but I had one and once I had surgery I could see better.How many yrs

have you had as and uveitis?

Bonnie

>

> Hi Bonnie.

> I get it about every 6 months or so. Sometimes worse then others.

I have had injections and been on predforty so much that I have an

immature cataract in my right eye. I have AS and am HLA B27

> +. I would be happy to share with you if you are interested.

>

> ________________________________

> From: bonnieparlin <bonnieandjerry177@...>

>

> Sent: Thursday, December 4, 2008 3:26:50 PM

> Subject: uveitis

>

> Is there anyone on this board that also has uveitis??

> I'd like to compare notes.

> Thanks,

> Bonnie

>

December 7, 2008

Hi,

I too have had uvetis, and must offer my sympathy...it is miserable!!

I has degenerative A, AS, and fibromyalgia. I had uveitis about a

year ago in the summer. As you mentioned it has been warm and sunny

there, my biggest irritant when I had UV was the sun, or any light

for that matter. As for your glasses needing strengthened, when

mending from my UV, my vision was incredibly blurry for aproximatelly

2 months, maybe 1 month after finishing my steroid drops, hopefully

your vision will correct itself as mine did after medical

interventions are complete, and your eyes have time to heal. I play

poker 2-3 times a week and I remeber not being able to see the large

index cards for atleast a couple of months. I would make sure to ask

your doctor or eye doctor if you are still concerned, but I hope you

will be feeling better soon.

Sincerely,

Jen Caine

>

> Hi everyone, sorry it's been a while--tax season, you know! My

uveitis has

> been pretty much under control for about a year now and I'm on

Methotrexate.

December 8, 2008

I was taking Enbrel for about 8 years. I had to stop because I developed a

couple of " MS like " lesions on my brain. I stopped the Enbrel and they went

away. I started taking the Enbrel and then they came back again. It has been a

nightmare. I am 36 years old and have been " diagnosed " with AS about 10 years

now. My brother was diagnosed about 6 months before I was. I have been having

problems with my eyes for about 15 years and problems with my back for as long

as I can remember. My GP docs always told me I had pink eye. I finally went to

a Ophthalmologist who confirmed diagnosis. All I am taking now is Indocin and

Norco. I have only been off the Enbrel for about 3 weeks now and I am scared to

death of a flare up. I guess I will just take it one day at a time. I tried

Methyltrexate in the past and the only thing it did was make my hair fall out.

When I take Pred I get psychotic. Humeria didn't work. I am allergic to

Sulfa. Kind of down about all of this. I feel like I just cannot get a

break. Then on top of everything this summer they diagnosed me with Fibro. I

am really frustrated. I am hoping for a full spinal or maybe even body

transplant in the near future. LOL. I work as a Scrub Nurse in the operating

room and it is really putting a damper on my career. I am a single mom trying

to make ends meet then on top of feeling like crap all the damn time. It gets

frustrating. I am working with my Rhumy (who is kind of useless because when I

was first diagnosed at UCLA she said " Hummm, women don't get AS " ). I almost

slapped her. She is lucky my mom was there... LOL. My Rhumy's standard answer

now is maybe I should go back to UCLA. My insurance just does not cover it. I

am at a loss with all of it right now.

________________________________

From: bonnieparlin <bonnieandjerry177@...>

Sent: Sunday, December 7, 2008 4:34:45 PM

Subject: Re: uveitis

so it sounds like the meds that you are on aren't doing the trick.

Are you on any immune suppressants or biologics? About the caterac,

you should actually hope for a caterac. Sounds silly for me to say,

but I had one and once I had surgery I could see better.How many yrs

have you had as and uveitis?

Bonnie

>

> Hi Bonnie.

> I get it about every 6 months or so. Sometimes worse then others.

I have had injections and been on predforty so much that I have an

immature cataract in my right eye. I have AS and am HLA B27

> +. I would be happy to share with you if you are interested.

>

> ____________ _________ _________ __

> From: bonnieparlin <bonnieandjerry177@ ...>

> groups (DOT) com

> Sent: Thursday, December 4, 2008 3:26:50 PM

> Subject: uveitis

>

> Is there anyone on this board that also has uveitis??

> I'd like to compare notes.

> Thanks,

> Bonnie

>

December 8, 2008

I have stock in predforte and Cyclogel. LOL. With my Uveitis, I know

immediately. I do not deal well with pain anymore. The older I get, the less

tolarance I have for it. With me, it starts with a migrain so I treat it on my

own immediately and then call my Doc and he will come in to see me whenever. My

vision has really gotten worse over the years and my pressures are always high.

I lucked out with a good doc who is also a friend in that area. He will

actually come to my house but I am also one of the only tech in town who can

scrub cataracts so he likes me. LOL.

Hil

________________________________

From: bonnieparlin <bonnieandjerry177@...>

Sent: Sunday, December 7, 2008 4:25:26 PM