Uveitis

[Guest guest]

-

's first eye exam was when she was 17 mos. She's had them every 3-4 months since then, and she's nearly 3 . . . So she had quite a few before the uveitis ever showed up. (She was just diagnosed about 1 1/2 mos. ago).I'd never heard the chances decrease with each appt, but I was taken by surprise because she'd so consistently been fine. 's first arthritis flare was only in one knee and she was perfectly fine for a year following a joint injection. When she flared again, her arthritis was much worse. She'd just seen the pediatric opthamologist, and didn't have another appt. scheduled for 4 mos (the longest she'd ever gone). I wish now I'd moved the appt. up because I'm sure her eyes flared when her arthritis did. So my advice would be to keep up with the regular eye exams and if flares again (God forbid), move up the exam if possible. Even if a child is in remission, regular eye exams are recommended until they're at least 18. The good news is, only about 20% of kids with jra actually develop uveitis, so 's odds are pretty good. Also, girls are more likely to get it:)

Diane (, 2, pauci)

[Guest guest]

Hi - do you know if Dr. Wirostko has any information published about his

findings? I see Dr. in Boston

who is supposedly " the expert " on uveitis, but things aren't going so well. I

just keep switching immune suppressors

and they keep making me sick. I'm also taking Minocin, but no results so far.

I'd love to find out more about Dr.

W's findings so I can ask some educated questions on my next visit.

Thanks,

Kim

Sbcona@... wrote:

> Hi everyone

> I saw Dr. Wirostko in NJ and was very encouraged.

> I have posterior uveitis that he is treating with

> Erythromycin orally and as an ointment in the eye.

> His lab studies have identified cell wall deficient

> microorganisms in the eyes of patients with uveitis.

> He has recommended switching antibiotics or adding another one in two to three

months if I am not seeing results.

> I am definitely glad that I went and hopeful about the outcome.Thanks for all

your support...susan

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Hi Kim

If you would like info on Dr. Wirostko you can email him at Wirostko@.... His office phone # is 908-429-883. I believe he has some literature he could send you.

Best wishes

[Guest guest]

sorry about that incomplete ph.#

It is 908-429-8832

susan

[Guest guest]

> Doesanyone know how to get in touch with Dr.Wirostko " s daughter

> who is also a practicing AP opthomologist? He was treating me

> for Uveitis before he passed away. I don't know who to see now...

> Thank you

> Conaway

Hi , This is what I have.....

Dr Barbara Wirostko

Opthamologist.. for AP

The Huntington Medical Group,

180 East Pulaski rd

Huntington NY 11746. 631-425-2155,

fax 631-425-2103.

[Guest guest]

> Doesanyone know how to get in touch with Dr.Wirostko " s daughter

> who is also a practicing AP opthomologist? He was treating me

> for Uveitis before he passed away. I don't know who to see now...

> Thank you

> Conaway

Hi ,

Not sure if this went through before. sorry...Barb

Dr Barbara Wirostko

Opthamologist.. for AP

The Huntington Medical Group,

180 East Pulaski rd

Huntington NY 11746. 631-425-2155,

fax 631-425-2103.

[Guest guest]

Yes, a child can get uveitis after having had jra for a while. In fact,

that's usually what happens. And a normal exam in October doesn't mean there

hasn't been a flare since then. A uveitis flare is usually symptom-free in the

early stages. If it's more progressed, the eyes might get red or be sensitive

to light. Could just be allergies or something like that. I'd take her to

get it checked -- even if it's something else, it may be something that needs

to be corrected. Is she ANA-positive?

[Guest guest]

If is HLA b27 positive she could have an eye disease that has

symptoms of buring and blurryness just to let you know. I found out that when

you

are HLA B27 it puts you at risk for another type of eye disease..

[Guest guest]

That I don't know... Never did get a straight answer out of the doctor on that

one. Another reason we a changing docs....

Re: Uveitis

Yes, a child can get uveitis after having had jra for a while. In fact,

that's usually what happens. And a normal exam in October doesn't mean there

hasn't been a flare since then. A uveitis flare is usually symptom-free in

the

early stages. If it's more progressed, the eyes might get red or be

sensitive

to light. Could just be allergies or something like that. I'd take her to

get it checked -- even if it's something else, it may be something that needs

to be corrected. Is she ANA-positive?

[Guest guest]

...

I don't know if she is that or not.. Does the pain come and go? How are you

feeling?

thanks and hugs,

Emilie

Re: Uveitis

If is HLA b27 positive she could have an eye disease that has

symptoms of buring and blurryness just to let you know. I found out that

when you

are HLA B27 it puts you at risk for another type of eye disease..

[Guest guest]

Emilie,

Have you been to uveitis.org yet? That may answer many of your

questions. As I recall, uveitis can occur even up to 7 years after

complete remission of JRA. It does not flare in parallel with any

JRA flare, which is part of what makes it so scary. There are

typically or frequently no symptoms. But high sensitivity to

light, sudden blurry vision that lasts, extreme redness and pain are

some of the symptoms. Don't friek out, but if your gut tells you

there is something wrong with the eyes, have them checked quickly by

an ophthalmologist under a slit lamp.

The uveitis can occur before JRA or after Jra or during JRA. I hope

things wind up good for you.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

My son has uveitis and I know sometimes he complained things looked

fuzzy. Brad's eye looks kinda saggy too when I know something is

going on. He currently has inflammation in both eyes. The problem

with inflammation in the eye is that things happen really fast in

the eye. You want to catch the inflammation in its early stages.

Don't wait--Get to the eye doctor and have it checked out--

Uveitis is easier to treat in the early stages. Good Luck!! Chris

> Hey everyone...

>

> s eyes have been burning lately.. When I asked her if she is

seeing spots or anything she said that she sees different colored

spots sometimes.. She also says that things sometimes get fuzzy.

Could this possible be uveitis? She had her eyes examined in

October and they were fine.. Also can a child get uveitis after they

have had JRA for a while?? Any advice would be appreciated..

> Thanks,

> Emilie and ( 5 Poly)

>

>

[Guest guest]

My name is Lynn and I have a 6yr old daughter who has JRA and she did not

start showing signs of uveitis till just about 2yrs ago and she has had JRA

since

she was 22 months old.

[Guest guest]

My daughter Aubrey presented Uveitis first then JRA two years later, I know this

is not rare. But it usually presents JOINT first Secondary eyes...

Her eye doctor in 16 years of practice has never seen a child present in

Aubrey's fashion.

So we are the lucky ones.....

We were lucky she was wearing glasses and was in for a routine eye exam when it

was found we saved her sight for having routine eye exams.............Terri B

Re: Uveitis

My name is Lynn and I have a 6yr old daughter who has JRA and she did not

start showing signs of uveitis till just about 2yrs ago and she has had JRA

since

she was 22 months old.

[Guest guest]

Oh how my heart is breaking.It seems like over night we are having more and

more stories of little ones trying to fight the eye complications of JRA.

We have absolutely no experiance with it being our son is systemic and it's

very rare with this sub type.

I realy don't think going up on the MTX will change anything so I pray you

get a differant direction in meds.

When you mention Boston ,I assume you are talking about the Massachusetts Eye

Institute,if so, go for it at all costs.

I have heard absolutely wonderful things about this place from others on the

list.

I hope you can control Brads Uveitis quickly and it still amazes me that some

children need the strongest of meds to control their eyes then children with

the most stubborn arthritis in every joint.

Love and hugs

Becki and 6 systemic

[Guest guest]

>

>

> So Sammy is taking a low dose of MTX and Humira. Thanks for your

> information--I am working on trying to get all my ducks in a row

> before next week. Talk to you soon!!! Chris

>

Yes, that's correct. BTW, when we started the Remicade (June 2003),

there weren't any published studies on the use of Remicade for

uveitis, just Enbrel, and the results were mixed. Our rheumatologists

had seen evidence that Remicade worked better and hypothesized that it

was due to it being a monoclonal antibody which works in a different

way than Enbrel, although both are TNF-inhibitors. (Humira is also a

monoclonal antibody.) I believe the use of Remicade and Humira for

uveitis in children is still " off-label " . All I can say is that for

us, they have done wonders.

There are pros and cons to Remicade vs. Humira. If it comes to that,

I'd be happy to tell you more about our experiences.

I wish you and Bradley the best of luck, and am so sorry to hear about

your latest setback. I know all too well how

awful it is to get bad news at eye appts. I've lost count of the

times I've left appts. feeling like I've been stabbed in the heart

yet again. I hold my breath every time Sammy gets her eyes examined.

Take care,

--Lori

[Guest guest]

I just wish you all were having a better time of it. Go to Boston--especially

if it is to see Dr. at the MEII. We were not able to make the trip but

saw one of the Drs that he recommends and she is a lifesaver. Good luck and

know my thoughts are with you.

Gretchen

weaverb96 <christineweaver@...> wrote:

Sammy's experiences sound just like Bradley's. Brad's appointment

today was not good. The good eye (right) is experiencing a flare

up. The lotemax is not doing it this time--Brad's eye doctor has

taken him off the lotemax 4 times a day and is starting that eye on

Pre-forte every other hour. It just scares me because we have been

here before with the bad eye (left). Our doctor discussed upping

the MTX, but I think we are at the max for Brad--he takes .9 ml by

injection one time a week. I mentioned the Cyclosporine to him--he

wants me to discuss this with Brad's Rheumatologist--we have an

appointment on April 18th. We see the eye doctor next Friday to see

how things are going. Hopefully that eye will respond to our

aggressive measures quickly and will not effect his pressures. His

pressures are good right now and need to stay that way. His Eye

Doctor has also suggested sending us to Boston for a 2nd opinion if

he can't get this under control soon.

The bad eye (left) is looking good right now for the first time in a

long time. Pressures are really good. Currently he takes 4 drops

of Pre-forte. I know they want to get that down, but this is the

first time inflammation is pretty much gone in that eye.

So Sammy is taking a low dose of MTX and Humira. Thanks for your

information--I am working on trying to get all my ducks in a row

before next week. Talk to you soon!!! Chris

> Hi

>

> My daughter, Sammy, also has pauci and a very difficult-to-treat

case of

> uveitis. She's also a steroid responder, so it's been important

for us to get

> her to absolute minimum doses of steroid drops. She's had

cataract surgery

> and wears a special contact lens (her doctor felt a lens implant

was too risky

> as it often triggers more inflammation), and this past fall she

had a

> glaucoma valve implant placed in her right eye. Heavy doses of

Pred Forte always

> got things under control quickly, but when we'd try to taper off

the drops, the

> inflammation would return. Usually when we'd get down to 2-3

times a day

> with the PF.

>

> Anyway, for us, MTX did nothing and Cellcept helped only for

awhile.

> Thankfully, Remicade (until she developed an allergy to it after

a year), and now

> Humira (each in conjunction with a low dose of MTX) has done

wonders. Her

> left ( " good " ) eye hasn't had any inflammation in over a year with

only Pred Mild

> (1/8 the strength of Pred Forte) once or twice a day, and the

only time her

> right ( " bad " ) eye has flared was when she was having all the

glaucoma

> surgeries this past summer/fall. We're now in the process of

getting her down to

> Pred Mild twice a day.

>

> We have been extremely fortunate to have wonderful doctors -- her

pediatric

> rheumatology team at Stanford, her eye doctors at UCSF, and her

first ped.

> opth. who did not hesitate to recommend more aggressive treatments

and referred

> us to specialists when it was clear she had a tough case of

uveitis. They

> have all worked together to keep trying new things until we got

things under

> control. Unfortunately, many doctors do not have the experience

or knowledge

> of all that is available to treat this disease, so it is

important that you

> as a parent keep pushing if necessary. Since it sounds like Brad

may be a

> steroid responder as well, it is even more vital that you find

something besides

> Pred Forte.

>

> Good luck with it, I know how scary and hopeless it can feel.

Please feel

> free to email any additional questions you may have about Sammy's

history.

>

> --Lori (Sammy, 5, pauci/uveitis)

>

>

>

[Guest guest]

In a message dated 12/06/2006 02:38:07 GMT Daylight Time, deanna341@...

writes:

Hi ,I'm new here and would like to know if anyone here has Uveitis

from there Psoriasis.

Hi Deanna,

A belated welcome to the group. I'm sorry that I can't help you with the

Uveitis question but hopefully someone will have by now. I know I have heard it

talked about here but I can't even remember what it is. lol

Take care,

[Guest guest]

helo deanna from massachusetts. cathy

[Guest guest]

Hi Zavie...thanks for the response. I knew it was

serious, but a year, oh my god! I feel like all I do

is put drops in my eyes and live in sunglasses! I sure

hope I respond to the medicine better than she did. I

really don't need more stress in my life!!!

Just a brief note of some of the stress right now, my

mom fell and broke her femur and her shoulder in three

places(both on the left side, at the same time, my dad

was just getting over radiation for lung cancer when

all of a sudden his chest keeps filling up with fluid.

Moms in a nursing home for at least 3 months and I'm

in charge of everything for them, shopping, paying

bills running them to the doctor, etc. Now it's

looking like I may have to put my dad in the hospital

for awhile so they can do a plurdisis(sp) on him.

Talk about stress. Then I have to work in my doc

appts in somewhere. In my spare time I just Collapse!

I'm a little surprised I'm not in the hospital by now,

lol

Lenda

--- Zavie miller <zmiller@...> wrote:

> Hi Lenda,

>

> My wife had uveitis in 2005 when we were touring in

> Ireland. It is also

> called iritis and very serious if it is not treated.

> The drug she used was

> Maxidex. She was not a good responder to the

> medication and it took a full

> year before she was cured. They would lower the dose

> to wean her off it, and

> it would flare up again. I hope that yours goes

> smoothly.

>

> Zavie

>

>

> Zavie (age 69)

> 67 Shoreham Avenue

> Ottawa, Canada, K2G 3X3

> dxd AUG/99

> INF OCT/99 to FEB/00, CHF

> No meds FEB/00 to JAN/01

> Gleevec since MAR/27/01 (400 mg)

> CCR SEP/01. #102 in Zero Club

> 2.8 log reduction Sep/05

> 3.0 log reduction Jan/06

> 2.9 log reduction Feb/07

> 3.2 log reduction Jun/07

> 3.6 log reduction Sep/07

> 3.5 log reduction Feb/08

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-202-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

> _____

>

> From:

> [mailto: ] On Behalf Of

> lblaine767

> Sent: March 9, 2008 12:03 PM

>

> Subject: [ ] Uveitis

>

> I just wanted to throw something out to see if any

> of my CLMers have

> had this before. I was suffering from sharp pain and

> pressure in my

> right eye and went to an eye specialist to find out

> what was causing

> it. I was diagnosed with Uveitis??? I thought he was

> pulling my leg,

> I've never heard of such a thing. So I quickly

> called my husband when

> the doc left the room and had him google it. Well,

> it's the third

> highest leading cause of blindness in the US. They

> really don't know

> what causes it, but I was wondering of the

> combination of cml and LOTS

> of stress could cause this. Anyone out there with

> feedback would be

> most welcome. Sorry if my typing is off...I'm typing

> with one eye!!!

> I feel like a pirate and they say it could take up

> to six weeks to

> get this under control. This is all I need right

> now.

>

> Thanks!!!!

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

Hi Lenda, you sure have a lot on your plate right now. But you sound like the

kind of person that can handle what comes your way. You're on top of my prayer

list, good luck, Bobby

Lenda <lblaine767@...> wrote: Hi Zavie...thanks for the

response. I knew it was

serious, but a year, oh my god! I feel like all I do

is put drops in my eyes and live in sunglasses! I sure

hope I respond to the medicine better than she did. I

really don't need more stress in my life!!!

Just a brief note of some of the stress right now, my

mom fell and broke her femur and her shoulder in three

places(both on the left side, at the same time, my dad

was just getting over radiation for lung cancer when

all of a sudden his chest keeps filling up with fluid.

Moms in a nursing home for at least 3 months and I'm

in charge of everything for them, shopping, paying

bills running them to the doctor, etc. Now it's

looking like I may have to put my dad in the hospital

for awhile so they can do a plurdisis(sp) on him.

Talk about stress. Then I have to work in my doc

appts in somewhere. In my spare time I just Collapse!

I'm a little surprised I'm not in the hospital by now,

lol

Lenda

--- Zavie miller <zmiller@...> wrote:

> Hi Lenda,

>

> My wife had uveitis in 2005 when we were touring in

> Ireland. It is also

> called iritis and very serious if it is not treated.

> The drug she used was

> Maxidex. She was not a good responder to the

> medication and it took a full

> year before she was cured. They would lower the dose

> to wean her off it, and

> it would flare up again. I hope that yours goes

> smoothly.

>

> Zavie

>

>

> Zavie (age 69)

> 67 Shoreham Avenue

> Ottawa, Canada, K2G 3X3

> dxd AUG/99

> INF OCT/99 to FEB/00, CHF

> No meds FEB/00 to JAN/01

> Gleevec since MAR/27/01 (400 mg)

> CCR SEP/01. #102 in Zero Club

> 2.8 log reduction Sep/05

> 3.0 log reduction Jan/06

> 2.9 log reduction Feb/07

> 3.2 log reduction Jun/07

> 3.6 log reduction Sep/07

> 3.5 log reduction Feb/08

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-202-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

> _____

>

> From:

> [mailto: ] On Behalf Of

> lblaine767

> Sent: March 9, 2008 12:03 PM

>

> Subject: [ ] Uveitis

>

> I just wanted to throw something out to see if any

> of my CLMers have

> had this before. I was suffering from sharp pain and

> pressure in my

> right eye and went to an eye specialist to find out

> what was causing

> it. I was diagnosed with Uveitis??? I thought he was

> pulling my leg,

> I've never heard of such a thing. So I quickly

> called my husband when

> the doc left the room and had him google it. Well,

> it's the third

> highest leading cause of blindness in the US. They

> really don't know

> what causes it, but I was wondering of the

> combination of cml and LOTS

> of stress could cause this. Anyone out there with

> feedback would be

> most welcome. Sorry if my typing is off...I'm typing

> with one eye!!!

> I feel like a pirate and they say it could take up

> to six weeks to

> get this under control. This is all I need right

> now.

>

> Thanks!!!!

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

Never miss a thing. Make your home page.

http://www./r/hs

a (Bobby) Doyle

Brecksville, Ohio, USA

DX 05/1995

02/2000 - Gleevec Trial/OHSU

06/2002 - Gleevec/Trisenox Trial/OHSU

06/2003 - Gleevec/Zarnestra Trial/OHSU

04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840 - Zavie's Zero Club

09/2006 - out of CCR

[Guest guest]

lora, restasis helps me with the tearing problem not 100% but does help ask

his eye dr. about it

aliza

**************It's Tax Time! Get tips, forms, and advice on AOL Money &

Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

[Guest guest]

I haven't had uveitis, but I have had something which is driving me

insane involving my eyes. I am trying to decide if it is too stupid

to bring up with the doctor since there is likely no cure or

remedy. I have developed severe twitching of both upper eyelids.

It occurs every single day for several hours...and the only thing I

have found that even works a little tiny bit is pressing on the

acpuncture point between the thumb and pointer finger (I got this

from a blog online about eyelid twitching). Has anybody else had

this or symptoms of eyestrain or anything like that? What do you

think, related to CML or Gleevec, or not?

Thanks for listening!

Vicki

>

> I just wanted to throw something out to see if any of my CLMers

have

> had this before. I was suffering from sharp pain and pressure in

my

> right eye and went to an eye specialist to find out what was

causing

> it. I was diagnosed with Uveitis??? I thought he was pulling my

leg,

> I've never heard of such a thing. So I quickly called my husband

when

> the doc left the room and had him google it. Well, it's the third

> highest leading cause of blindness in the US. They really don't

know

> what causes it, but I was wondering of the combination of cml and

LOTS

> of stress could cause this. Anyone out there with feedback would be

> most welcome. Sorry if my typing is off...I'm typing with one

eye!!!

> I feel like a pirate and they say it could take up to six weeks to

> get this under control. This is all I need right now.

>

> Thanks!!!!

>

[Guest guest]

Dear Zavie,

Poor Ida, first you, always on the computer and then Uveitis. LOL. I hope

she has no further problems, did they say she was cured? Mayo Clinic has a

picture and brief explanation if anyone wants to read more about it.

http://www.mayoclinic.com/health/uveitis/DS00677/DSECTION=2

Lottie

[Guest guest]

Hi,

My daughter has had the same thing since 2002.  I know a few families from PA,

who either travel to Dupont for (vision and rheumie), Boston, and the third has

left me!!! Brain fog.  If you go to the uosg.org site, other parents will meet

you there (including me), but the ones from your area are; .Glenn, Kim, and

Anne.  On the adult side there is , and again brain fog has taken

over....I need my coffee!

 

Eye pain can come from; photophobia (light sensitivity), dry eyes, and high

intra ocular pressure (glaucoma) that can come from steroids (drop or oral). 

Eye pain is serious and needs to be dealt with asap.  Getting an uveitis

specialist or ocular immunologist on board from the very beginning will save you

from a lot of grief and lost time.  It took me two years to know that I had to

find the right Dr. I just followed the rheumatologist back home....mistake.  The

damage that was done to my daughters eyes happened in the first year.  I should

restate that, the irreversible damage.  There is a lot of hope, though, when it

is dealt with aggressively. 

 

The meds that treat the body will treat the eyes, too, the difference being that

the dose has to be higher.  So, a rheumatologist that prescribes the meds for

the eye, is not the way to go.  An Ocular immunologist is also a rheumatologist,

but they are hard to come by.  I believe we only have 7 or 8 in the states.  The

next desirable is a uveitis specialist, but he or she has to be aggressive,

especially in cases of JRA.

 

My daughter has had a total of 3 vitrectomy surgeries, 5 laser surgeries

(cryopexy to freeze cells that they couldn't get out, and cartarize the vessels

that were bleeding - then yag to blast a hole through secondary cataracts) 2

cataract surgeries with lens implants, and various injections of steroid into

the eye.  I'm not telling you this to scare you, just to show you how aggressive

this needs to be treated, and I believe a lot of those would NOT have had to be

done if she had the right treatment from the getgo. 

 

I am happy to report, though, that we are tapering her off her medication.  It

has been a long 6 1/2 years.  Her distant vision is wonderful.  Her close vision

isn't so great.  We can fix that with magnifying/reading glasses.  She hasn't

had a flare in her body in years.  By September she should be off all

medication.

 

Stay strong, knowledge is power,

' & a 12 jia/uveitis

From: cksharpe2004 <cksharpe2004@...>

Subject: Uveitis

Date: Monday, July 14, 2008, 6:49 PM

Hi all, I am new to this group. I am not on the computer on a regular

basis but my daughter was just recently diagnosed with the uveitis

because of the JRA. I really don't understand what this uveitis is. She

had it active in her eyes in one visit then quiet the next. Just

recently they reduced her drops and now we have to go to the doctors

tomorrow because she woke up the other night yelling her eyes hurt.What

is this all about. Somedays I just don't think I can take all this.

(my daughter) and my husband and I have been doing this JRA

since about 18monts 2 years old. It just seems to stay the same but

never goes away. Now it affects her eyes. Just getting stressed it is

nice to know that there are others out there dealing with the same

thing. We are from a small town in Pa and not many here know about this

stuff.