Re: Eye disease from Spondyloarthropathies

[Guest guest]

Connie:

Thanks, this was very helpful.

I post very rarely but read everything. I have undiff.

spondy.

I have problems with dry eye that are worsening and

some mild pain in that eye only.

Can you tell me how you found your ophthalmologist? I

visited a well known one in my area a few years ago,

about a year into plaquenil treatment. Though I did

not feel I got much attention, I was reassured that

they don't see retinal damage very often, close

follow-up was not necessary, etc

4 years later, I self referred to my kids' optometrist

and found out that I have sustained some losses in

color visual fields in one eye, presumably due to

plaquenil. The optometrist did a better job than the

ophthalmologist, but I would like to see an MD savvy

in autoimmune diseases.

Best of luck with retaining your visual functions as

best you can. Thanks for telling of your experience.

Thanks

Ann

--- Grannyof9@... wrote:

> There are usually two eye diseases connected with

> the Spondyloarthropathies

____________________

Ann

__________________________________

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[Guest guest]

My son-in-law is the one with Reiter's and he has the Iritis/Uveitis

more then anything else. He left his job at Nissan becasue of the

physical stress and so there went the helath insurance. HE had started

on Enbrel and was doing fine but couldn't afford it without the

insurance.

He has just got a new job where his boss has been very understanding

aobut his health. Thank God his insurance will kick in at the end of

the month.

You mentioned a vitrectomy that would have saved damage to your eye.

Can you tell me what that is and what it entailed? Andy is so afraid

that he will lose his sight. I am always looking for information that

will help him.

HIs meds before have caused cateracts and he has had to go off the meds

for hsi eye for 3 mos before the doctors would remove the cateracts. IF

it hasn't beenone thing it has been another.

[Guest guest]

In a message dated 10/12/2005 9:44:48 PM Eastern Daylight Time,

jinesgenes@... writes:

You mentioned a vitrectomy that would have saved damage to your eye.

As you know, chronic Iritis is very difficult to treat. The steroid drops can

have side effects, like the cataracts you mentioned and also it can cause

high optic pressure which can cause glaucoma, but to have some success, we have

to go ahead and treat the eye problem and try to prevent, as much as possible,

the steroid side effects. In the beginning, I had simple iritis, which would

go into remission after2-3 months of treatment. I would have one or two attacks

a year....always going to the doctor to have it treated. Many years later, my

iritis became pretty constant and this is when the cells had invaded the

vitreous. Repeated attacks of Iritis can cause the inflammatory cells to migrate

to the vitreous (posterior uveitis), which is a gel like substance instead of

the watery substance (anterior uveitis) of the Iris where the steroid drops can

easily penetrate. When the cells are in the vitreous, it is almost impossible

for the steroid drops to be of any benefit. If those cells continue to stay

in the vitreous....month after month, there will be continual inflammation and

damage. This is what happened to me, and for years, I was on constant pred

drops, dilations, steroid shots in my eye, drops to bring the pressure down, 3

different IOP drops at a time towards the end, before my pressures became too

high. Also, I tried the immune suppressant drugs cylosporin/methotrexate and

finally Humira. (anti TNF) A vitrectomy will be a last resort effort....but it

should be done as soon as the doctor finds out that the drops or a steroid shot

to the eye area aren't doing any good, regardless of how rigorously you treat

it. My Ophthalmologist didn't have extensive training in Uveitis, so was

unaware of this procedure which sould have helped, but would have been better

if

he had done it before I lost vision from the glaucoma. When and if your

son-in-law's iritis starts to invade the middle or vitreous part of the eye, if

would

benefit to be seen by a uveitis specialists. I will send a list of ones which

are listed in the Uveitis support group on line. It isn't something you would

do unless the iritis gets very complicated. How high is his IOP pressure when

he is being treated? Are the cells still within the iris? How many episodes

does he have a year....or it is continual? Thank heavens, most iritis does not

go on to these more serious diseases. And not all the eye diseases associated

with spondy are true Iritis. Symptoms are similar. Hope this helps. Connie

http://www.uveitis.org/patient/specialists/default.html

http://www.iritis.org/CMScore/index.php?EntryID=8

[Guest guest]

Thank you so much. I have printed out reply and will give it to Andy.

He is very stubborn and so what he will so with this information I

don't know.

I don't know the answers to your questions but at least they are there

for Andy to ask his doctor.

[Guest guest]

My son was diagnosed with Reiter's after 4 serious bouts of uveitis in a 10

month period...I took him to a Naturopath for a complete nutritional analysis

and discovered food allergies to be the antigens that trigger the inflamation in

his eyes (as well as IBS, seizures, low back pain and sciatica). He has been on

a fairly strict diet avoiding all allergens for a year now and has not had a

single flare up of uveitis, not a seizure, very little back pain and is in

amazing condition compared to how sick he was last year this time. I keep

telling people his story and encouraging them to get the proper testing and

straighten out their diet...that seems too easy for some people to believe, but

he is a walking miracle.

[Guest guest]

whats a naturopath? Kathy from WI

[Guest guest]

Wow...Connie, thanks for the very helpful info.

I am so sorry for your eye troubles...I can totally relate. You have been

through so much. Have you lost total or partial vision? In one or both eyes?

Have you had to go on disability?

I, too, have had chronic eye inflammation...it started to get worse with my

menopause and it is by far my scariest symptom. I had a nasty bout of scleritis

and nearly lost my left eye in 4/04.

Recently, and amazingly I am doing better with acupuncture and chinese herbs. I

was skeptical at first but I have been able to gradually reduce my doses of pred

eye drops, glaucoma drops and aleve. Even with the lowered doses, my flares are

less frequent and less severe. I am deeply grateful to this Chinese MD for such

improvement. I have also been doing other good things for my health. So I will

continue on this path and keep you all posted.

I think I am in good hands with my UCI Ophthamologist but a second opinion is

always good idea. I copied your linked info on uveitis specialists and will get

a second opinion from one of the eye MD's at the UCLA Jules Stein Institute in

the next few months. I had a name of a woman MD who specialized in inflammation

from UCLA J.S.I but she left for another job before I could see her. Your link

lead me to a choice of 3 MD's.

Again, thanks for the info. I will be staying in touch.

Sincerely,

in CA

P.S. How is Ray doing? We have not heard much from him lately...sure hope he's

okay. I know he's had such a huge loss. Keeping him in my prayers.

----- Original Message -----

From: Grannyof9@...<mailto:Grannyof9@...>

chronic Iritis is very difficult to treat. .

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[Guest guest]

, I lost almost half of my lower vision in the left eye and the

cataract in my right eye is getting pretty ripe. I've put off getting it done,

as the

iritis has a tendency to flare up after eye surgery. That happened after my

first cataract operation. The doctors aren't too excited about doing it,

either. As long as I can see to drive, do my new hobby of crocheting (it is

easier

to do with eye problems than cross-stitch, which I used to do). However, I

drove from NC to Florida, and thank heaven, the peripheral vision on my right

side

is good enough to see cars. Even with my eye problems, I do better than my

husband, who is 83 years and becoming slow in reaction time. God is Gracious. We

are both retired old foggies. (Yes, I mean " fog " as both tend to be in some

kind of fog all the time. :-)

The glaucoma implant operation was very scary. I, too, thought I had lost

permanent vision. At one point, and for several months, my vision was 20/400

corrected vision. I now have 20/50-60. It cannot be corrected as I have a lot of

distortion...damage to retina nerve. It took a long time to get used to that.

The whole eye chart looks like " s " s. Top letter on down. Your good eye takes

over and does all the work. My bad eye helps a little in perception.Threading

a needle is almost impossible. Try it with just one eye...sometime. Even with

luck on your side...it is hard.

As most of our problems...the best thing to do is try to adjust, we can't do

anything about it except getting good doctors and meds and the rest is up to

us. A good attitude is better than any meds you can take. I always feel that

it helps me to see what others have to deal with in life....people much worst

off than me...and it helps not to dwell on myself. I'm sure most of us get to

that point...You can't

give up the fight, but at some point you have to resign yourself to having

this disease and make the most of it and try to be the person you want to be

regardless

Connie.

[Guest guest]

Thanks for your response, Connie. I can imagine that emailing is a bit of a

challenge for you these days so I really appreciate the time and care you took.

I sure do understand " the fog " problem...I thought I was just having a weird,

prolonged and difficult menopause...but I now realize it is probably the

auto-immune condition. And yes...attitude is so important.

Again thanks,

, I lost almost half of my lower vision in the left eye and the

cataract in my right eye is getting pretty ripe.