Re: Madison has Iritis! :( and questions

February 22, 2006

Ashlee-

A slow taper does work best. But Madison does not necessarily need to be on

Pred Forte for years. My daughter has had flares which have been pretty

quickly controlled. After a taper lasting a few months, she has been fine for

long periods of time. It's when the inflammation returns every time you taper

that you need to accept a more long-term course of treatment, with the drops

and possible with other meds. Personally, I don't feel comfortable relying

on pred forte for extended periods of time, unless the dosage is minimal . . .

like one or two drops per day. There are too many risks associated with

long-term usage of the drops. has just started back on methotrexate for

her eyes (her arthritis is in remission). B/c there are no iritis specialists

in my state, and I was uncomfortable with the ongoing use of Pred Forte, I

had to push for this, and get 's rheumy involved to convince the

opthamologist it was necessary. I agree with the other email that it's so

important

to stay on top of this and not to just accept the status quo when there's

ongoing inflammation.

Re symptoms you can see . . . usually no. There can be redness, pain or

light sensitivity, but not usually unless it's really advanced.

Re time between appointments, I push for every two months even when the

iritis is controlled. 's doctor seems content to go with the pre-iritis

every 3-4 months, which makes no sense to me. Every time I let my guard down

and allow that long between appointments, there's a flare and I have to wonder

how long it was there. Once she's had one flare, you can bet she'll have

another, and since you can't see a flare, she needs to be examined as often as

possible. At least that's what I think :-)

Good luck!

Diane (, 6, pauci in remission, iritis)

February 22, 2006

Hi Ashlee,

Sorry about the iritis. Pred forte' is important to fire hose the

inflammation in the front part of the eye, just don't let that be the mainstay

of treatment. With the generic drops, make sure you shake the heck out of them

before you instill the drop in her eyes. Generic is fine, just needs a little

help with distrubition.

During a flare, an appt. every 6 weeks is customary with an uveitis

specialist. Is the eye doc a uveitis specialist? I spent the first year with a

pediatric opthalmalogist who only did drops, and never referred us out until

damage had taken place. I'm not trying to scare you, just giving you a heads

up.

Is Madison on meds for her jra? Jra meds help uveitis, however, the dosage of

the meds needs to be increased. Usually you can incorporate the meds that are

needed in just two meds, and now a whole gaggle of them. This way you can taper

off of the pred forte' when there is no inflammation (slow taper) then start a

two year countdown as long as there isn't a flare in the eyes. After two

years, a taper of meds begins and durable remission can take place! This is the

best part. Durable remission is a long period of time with no inflammation.

www.uveitis.org is a great site to read up on it.

I'm not sure where you live, but you might even be blessed to have more than

an uveitis specialist, but a ocular immunologist there as well. That is a

rheumatologist, opthamologist who can not only monitor eyes but prescribe meds

to cover the jra/uveitis.

When your daughter is visually stable, every 3 months for a period of time is

normal to see the eye guy. Then every 6 months.....

Make sure you let your daughter wear sun glasses if she will keep them on.

Photophobia (light sensitivity) is horrible with an anterior flare.

I am passionate about helping parents find the right doctor with this because

of my childs own experience. Uveitis needs to be dealt with quickly and

aggressively. There is nothing to be scared of, but education is a must in

order to fight it.

Sorry for the book. I'm glad that the eye guy found it so quickly, what a

plus.

Hang in there,

'

Ashlee Blair <ablair@...> wrote:

I haven't been online in a while...I guess since Madison has been doing so

well...that was until yesterday. She had her usual 3 month observation and has

now developed Iritits!!! I am so crushed...she has gone 2 years with no eye

involvement! Her doc said that it is on in the front portion of her eye and

it's mild to moderate!

She put her on the pred forte (which when I got it filled we got the generic)

drops 4 times a day and has to go back next Tuesday! Her doc also said that she

would leave her on the for a " long time " b/c she went to a conference and the

biggest problems the doctors had faced was taking the kids off too soon.

Now questions!!!

Will she have to go to the eye doc more often now? She already went every 3

months.

Anything I should look for...Dr. Sowers said that there are no signs or symptoms

but do you know any different?

Thanks in advance...it's so wonderful to know you are all there when I need you!

Ashlee (Madison, 3 ½, Poly, now Iritis!)

February 22, 2006

Hi Ashlee -

I am sorry to hear about Madison's Iritis. I am glad you stayed diligent in

going to the appointments though!!!

As far as the Pred Forte - your doctor needs to write on the prescription that

" no generic " accepted. That's what we did. Our ophthalmologist said that there

is a definite difference between the generic and the original. If you have to

use the original you might look at adding an extra dosage. Caroline has run the

gamut on eye drops. She is currently on six times a day each eye, but we have

been up to every waking hour before. That was not fun!! We have been on pred

forte eye drops for 2+ years now. We are lucky in that Caroline does not have

any signs of cataracts or glaucoma.

Until her Iritis is under control you should be going every 2-6 weeks. Once they

are calm you can extend those appointments out to every three months and slowly

increasing the time between appointments. Caroline goes about every 2-6 weeks

depending on how her eyes are doing. We had her tapered down to " clear " so we

went three months in between appointments. We went back 2 weeks ago and she was

a 1+-2. We now go back tomorrow to recheck her eyes.

There are no sign of Iritis that is why it is so important to go in to see the

doctor. Do you go to a Uveitis specialist? If you can find one, or if she is one

great! Light sensitivity is about the only thing that might be an indicator.

Although I think the eye drops increase the sensitivity. Buy LOTS of sunglasses.

We must have 10 pairs for Caroline. In the beginning it was hard for her to get

used to them, but now they are second nature. She even wears sunglasses in the

winter time!

Please let me know if you have any other questions!

Hang in there!

Alia and Caroline, age 4, poly and iritis

________________________________

From: [mailto: ] On Behalf Of

Ashlee Blair

Sent: Wednesday, February 22, 2006 9:57 AM

Subject: Madison has Iritis! and questions

I haven't been online in a while...I guess since Madison has been doing so

well...that was until yesterday. She had her usual 3 month observation and has

now developed Iritits!!! I am so crushed...she has gone 2 years with no eye

involvement! Her doc said that it is on in the front portion of her eye and

it's mild to moderate!

She put her on the pred forte (which when I got it filled we got the generic)

drops 4 times a day and has to go back next Tuesday! Her doc also said that she

would leave her on the for a " long time " b/c she went to a conference and the

biggest problems the doctors had faced was taking the kids off too soon.

Now questions!!!

Will she have to go to the eye doc more often now? She already went every 3

months.

Anything I should look for...Dr. Sowers said that there are no signs or symptoms

but do you know any different?

Thanks in advance...it's so wonderful to know you are all there when I need you!

Ashlee (Madison, 3 ½, Poly, now Iritis!)

February 22, 2006

Thank you so much for your reply you answered so many of my

questions!

Madison's doctor is a ped. opth. but she has treated LOTS of cases

of Iritis and Uveitis. She was telling me about going to

conferences for Iritis/Uveitis.

Madison is on Methotrexate and Motrin. She just came off of

steroids in January b/c she was doing so good. Her eye doc said

that she would have definately put madison on Methotrexate if she

developed iritis so we've already got that covered.

Her doctor is Dr. Sowers in Roanoke, Virginia.

Thanks again so very much!!!!!!

Ashlee

> I haven't been online in a while...I guess since Madison has

been doing so well...that was until yesterday. She had her usual 3

month observation and has now developed Iritits!!! I am so

crushed...she has gone 2 years with no eye involvement! Her doc

said that it is on in the front portion of her eye and it's mild to

moderate!

>

> She put her on the pred forte (which when I got it filled we got

the generic) drops 4 times a day and has to go back next Tuesday!

Her doc also said that she would leave her on the for a " long time "

b/c she went to a conference and the biggest problems the doctors

had faced was taking the kids off too soon.

>

> Now questions!!!

>

> Will she have to go to the eye doc more often now? She already

went every 3 months.

>

> Anything I should look for...Dr. Sowers said that there are no

signs or symptoms but do you know any different?

>

> Thanks in advance...it's so wonderful to know you are all there

when I need you!

>

> Ashlee (Madison, 3 ½, Poly, now Iritis!)

>

February 22, 2006

Ashlee - The prednisone might have been what was keeping her Iritis at bay.

Caroline has been on oral prednisone as long as she's been on Pred Forte. We

have attempted tapering her dosage three times and each and every time her eyes

flared. She is now on a low dosage (3mg) daily and that seemed to be doing the

trick until our recent flare. We are starting IVIG treatments on Monday in hopes

of helping her eyes...

Alia and Caroline, age 4, poly and iritis

________________________________

From: [mailto: ] On Behalf Of

Ashlee Blair

Sent: Wednesday, February 22, 2006 10:26 AM

Subject: Re: Madison has Iritis! and questions

Thank you so much for your reply you answered so many of my

questions!

Madison's doctor is a ped. opth. but she has treated LOTS of cases

of Iritis and Uveitis. She was telling me about going to

conferences for Iritis/Uveitis.

Madison is on Methotrexate and Motrin. She just came off of

steroids in January b/c she was doing so good. Her eye doc said

that she would have definately put madison on Methotrexate if she

developed iritis so we've already got that covered.

Her doctor is Dr. Sowers in Roanoke, Virginia.

Thanks again so very much!!!!!!

Ashlee

> I haven't been online in a while...I guess since Madison has

been doing so well...that was until yesterday. She had her usual 3

month observation and has now developed Iritits!!! I am so

crushed...she has gone 2 years with no eye involvement! Her doc

said that it is on in the front portion of her eye and it's mild to

moderate!

>

> She put her on the pred forte (which when I got it filled we got

the generic) drops 4 times a day and has to go back next Tuesday!

Her doc also said that she would leave her on the for a " long time "

b/c she went to a conference and the biggest problems the doctors

had faced was taking the kids off too soon.

>

> Now questions!!!

>

> Will she have to go to the eye doc more often now? She already

went every 3 months.

>

> Anything I should look for...Dr. Sowers said that there are no

signs or symptoms but do you know any different?

>

> Thanks in advance...it's so wonderful to know you are all there

when I need you!

>

> Ashlee (Madison, 3 ½, Poly, now Iritis!)

>

February 22, 2006

Thank you for replying...I was hoping you would since i knew

Caroline had been having problems for a while!

I love her ped. optha. and she has treated lots of cases of Iritis

and Uveitis. I'm not sure if she is a uveitis specialist but so far

i have no complaints and she is ALWAYS on top of things. She was

very happy to learn that her ped. rheumy had put her on methotrexate

b/c she said madison would definately go on that if iritis developed.

THANKS SO MUCH!

Ashlee

>

> Hi Ashlee -

>

> I am sorry to hear about Madison's Iritis. I am glad you stayed

diligent in going to the appointments though!!!

>

> As far as the Pred Forte - your doctor needs to write on the

prescription that " no generic " accepted. That's what we did. Our

ophthalmologist said that there is a definite difference between the

generic and the original. If you have to use the original you might

look at adding an extra dosage. Caroline has run the gamut on eye

drops. She is currently on six times a day each eye, but we have

been up to every waking hour before. That was not fun!! We have been

on pred forte eye drops for 2+ years now. We are lucky in that

Caroline does not have any signs of cataracts or glaucoma.

>

> Until her Iritis is under control you should be going every 2-6

weeks. Once they are calm you can extend those appointments out to

every three months and slowly increasing the time between

appointments. Caroline goes about every 2-6 weeks depending on how

her eyes are doing. We had her tapered down to " clear " so we went

three months in between appointments. We went back 2 weeks ago and

she was a 1+-2. We now go back tomorrow to recheck her eyes.

>

> There are no sign of Iritis that is why it is so important to go

in to see the doctor. Do you go to a Uveitis specialist? If you can

find one, or if she is one great! Light sensitivity is about the

only thing that might be an indicator. Although I think the eye

drops increase the sensitivity. Buy LOTS of sunglasses. We must have

10 pairs for Caroline. In the beginning it was hard for her to get

used to them, but now they are second nature. She even wears

sunglasses in the winter time!

>

> Please let me know if you have any other questions!

>

> Hang in there!

>

> Alia and Caroline, age 4, poly and iritis

>

> ________________________________

>

> From: [mailto: ]

On Behalf Of Ashlee Blair

> Sent: Wednesday, February 22, 2006 9:57 AM

>

> Subject: Madison has Iritis! and questions

>

> I haven't been online in a while...I guess since Madison has been

doing so well...that was until yesterday. She had her usual 3 month

observation and has now developed Iritits!!! I am so crushed...she

has gone 2 years with no eye involvement! Her doc said that it is

on in the front portion of her eye and it's mild to moderate!

>

> She put her on the pred forte (which when I got it filled we got

the generic) drops 4 times a day and has to go back next Tuesday!

Her doc also said that she would leave her on the for a " long time "

b/c she went to a conference and the biggest problems the doctors

had faced was taking the kids off too soon.

>

> Now questions!!!

>

> Will she have to go to the eye doc more often now? She already

went every 3 months.

>

> Anything I should look for...Dr. Sowers said that there are no

signs or symptoms but do you know any different?

>

> Thanks in advance...it's so wonderful to know you are all there

when I need you!

>

> Ashlee (Madison, 3 ½, Poly, now Iritis!)

>

February 22, 2006

I'm so glad I helped a bit. I'm glad your Dr. is willing to put her on

MTX...! There is a pediatric uveitis conference April 8th in Cambridge

Massachusetts if you want to come! LOL I live in Oregon, but I am going. I'm

incorporating an appointment as well. Dr. will be covering jra/uveitis.

Big hugs,

', a 10 yrs...4 year battle of jra/pan uveitis

Ashlee Blair <ablair@...> wrote:

Thank you so much for your reply you answered so many of my

questions!

Madison's doctor is a ped. opth. but she has treated LOTS of cases

of Iritis and Uveitis. She was telling me about going to

conferences for Iritis/Uveitis.

Madison is on Methotrexate and Motrin. She just came off of

steroids in January b/c she was doing so good. Her eye doc said

that she would have definately put madison on Methotrexate if she

developed iritis so we've already got that covered.

Her doctor is Dr. Sowers in Roanoke, Virginia.

Thanks again so very much!!!!!!

Ashlee

> I haven't been online in a while...I guess since Madison has

been doing so well...that was until yesterday. She had her usual 3

month observation and has now developed Iritits!!! I am so

crushed...she has gone 2 years with no eye involvement! Her doc

said that it is on in the front portion of her eye and it's mild to

moderate!

>

> She put her on the pred forte (which when I got it filled we got

the generic) drops 4 times a day and has to go back next Tuesday!

Her doc also said that she would leave her on the for a " long time "

b/c she went to a conference and the biggest problems the doctors

had faced was taking the kids off too soon.

>

> Now questions!!!

>

> Will she have to go to the eye doc more often now? She already

went every 3 months.

>

> Anything I should look for...Dr. Sowers said that there are no

signs or symptoms but do you know any different?

>

> Thanks in advance...it's so wonderful to know you are all there

when I need you!

>

> Ashlee (Madison, 3 ½, Poly, now Iritis!)

>

February 22, 2006

Hi Alia,

I hope the ivig treatments do the trick as they have done for my daughter.

She has been on ivig for almost a year and is truly sick and tired of infusions

I have to say. 3 days a month over about 3 hours a day is starting to get to

her. She is such a strong trooper.

Make sure they don't infuse her too fast or over just one day.... My daughter

had to get a port a cath because the meds she was on for the two years prior had

made her veins small and rubbery. She only has one good vein left, and I don't

want them to ruin it.

The infusion clinic will have a t.v., blankets and food to occupy her.

Good luck!

', a 10yrs jra/uveitis

Alia.Pranke@... wrote:

Ashlee - The prednisone might have been what was keeping her Iritis at bay.

Caroline has been on oral prednisone as long as she's been on Pred Forte. We

have attempted tapering her dosage three times and each and every time her eyes

flared. She is now on a low dosage (3mg) daily and that seemed to be doing the

trick until our recent flare. We are starting IVIG treatments on Monday in hopes

of helping her eyes...

Alia and Caroline, age 4, poly and iritis

________________________________

From: [mailto: ] On Behalf Of

Ashlee Blair

Sent: Wednesday, February 22, 2006 10:26 AM

Subject: Re: Madison has Iritis! and questions

Thank you so much for your reply you answered so many of my

questions!

Madison's doctor is a ped. opth. but she has treated LOTS of cases

of Iritis and Uveitis. She was telling me about going to

conferences for Iritis/Uveitis.

Madison is on Methotrexate and Motrin. She just came off of

steroids in January b/c she was doing so good. Her eye doc said

that she would have definately put madison on Methotrexate if she

developed iritis so we've already got that covered.

Her doctor is Dr. Sowers in Roanoke, Virginia.

Thanks again so very much!!!!!!

Ashlee

> I haven't been online in a while...I guess since Madison has

been doing so well...that was until yesterday. She had her usual 3

month observation and has now developed Iritits!!! I am so

crushed...she has gone 2 years with no eye involvement! Her doc

said that it is on in the front portion of her eye and it's mild to

moderate!

>

> She put her on the pred forte (which when I got it filled we got

the generic) drops 4 times a day and has to go back next Tuesday!

Her doc also said that she would leave her on the for a " long time "

b/c she went to a conference and the biggest problems the doctors

had faced was taking the kids off too soon.

>

> Now questions!!!

>

> Will she have to go to the eye doc more often now? She already

went every 3 months.

>

> Anything I should look for...Dr. Sowers said that there are no

signs or symptoms but do you know any different?

>

> Thanks in advance...it's so wonderful to know you are all there

when I need you!

>

> Ashlee (Madison, 3 ½, Poly, now Iritis!)

>

February 22, 2006

too funny...i have already checked into that and have info printed

off for both my husband and her eye doc! I would love to go...it

would be a 12 hour drive for us so we might would fly! We've only

flown once...to the arthritis conference in San Diego. What a first

flight for us...all the way across the country! I'll definately

let you know if we plan to go b/c i would love to meet you!

Ashlee

> > I haven't been online in a while...I guess since Madison has

> been doing so well...that was until yesterday. She had her usual

3

> month observation and has now developed Iritits!!! I am so

> crushed...she has gone 2 years with no eye involvement! Her doc

> said that it is on in the front portion of her eye and it's mild

to

> moderate!

> >

> > She put her on the pred forte (which when I got it filled we got

> the generic) drops 4 times a day and has to go back next Tuesday!

> Her doc also said that she would leave her on the for a " long

time "

> b/c she went to a conference and the biggest problems the doctors

> had faced was taking the kids off too soon.

> >

> > Now questions!!!

> >

> > Will she have to go to the eye doc more often now? She already

> went every 3 months.

> >

> > Anything I should look for...Dr. Sowers said that there are no

> signs or symptoms but do you know any different?

> >

> > Thanks in advance...it's so wonderful to know you are all there

> when I need you!

> >

> > Ashlee (Madison, 3 ½, Poly, now Iritis!)

> >

February 22, 2006

That's exactly what her eye doc said.

> > I haven't been online in a while...I guess since Madison has

> been doing so well...that was until yesterday. She had her usual

3

> month observation and has now developed Iritits!!! I am so

> crushed...she has gone 2 years with no eye involvement! Her doc

> said that it is on in the front portion of her eye and it's mild

to

> moderate!

> >

> > She put her on the pred forte (which when I got it filled we got

> the generic) drops 4 times a day and has to go back next Tuesday!

> Her doc also said that she would leave her on the for a " long

time "

> b/c she went to a conference and the biggest problems the doctors

> had faced was taking the kids off too soon.

> >

> > Now questions!!!

> >

> > Will she have to go to the eye doc more often now? She already

> went every 3 months.

> >

> > Anything I should look for...Dr. Sowers said that there are no

> signs or symptoms but do you know any different?

> >

> > Thanks in advance...it's so wonderful to know you are all there

> when I need you!

> >

> > Ashlee (Madison, 3 ½, Poly, now Iritis!)

> >

February 22, 2006

LOL There are alot of parents, including myself, staying at the Cambridge

Hyatt. There is a swimming pool for the kids, and it has a free shuttle to Dr.

s office.

Ashlee Blair <ablair@...> wrote: too funny...i have already checked

into that and have info printed

off for both my husband and her eye doc! I would love to go...it

would be a 12 hour drive for us so we might would fly! We've only

flown once...to the arthritis conference in San Diego. What a first

flight for us...all the way across the country! I'll definately

let you know if we plan to go b/c i would love to meet you!

Ashlee

> > I haven't been online in a while...I guess since Madison has

> been doing so well...that was until yesterday. She had her usual

3

> month observation and has now developed Iritits!!! I am so

> crushed...she has gone 2 years with no eye involvement! Her doc

> said that it is on in the front portion of her eye and it's mild

to

> moderate!

> >

> > She put her on the pred forte (which when I got it filled we got

> the generic) drops 4 times a day and has to go back next Tuesday!

> Her doc also said that she would leave her on the for a " long

time "

> b/c she went to a conference and the biggest problems the doctors

> had faced was taking the kids off too soon.

> >

> > Now questions!!!

> >

> > Will she have to go to the eye doc more often now? She already

> went every 3 months.

> >

> > Anything I should look for...Dr. Sowers said that there are no

> signs or symptoms but do you know any different?

> >

> > Thanks in advance...it's so wonderful to know you are all there

> when I need you!

> >

> > Ashlee (Madison, 3 ½, Poly, now Iritis!)

> >

February 22, 2006

Thanks for the reply. I don't think she plans to have her on drops for

years but she said she would definitely not take her off just b/c it's

cleared up. She would want her on them for a while after that. I'm

gathering my list of questions to ask at next weeks appointment. I was

in such shock yesterday and had not done any research on iritis just

because she didn't have it that I was so unprepared! Trust me I will

have lots next week...look out doc you better clear your schedule! :-)

Madison does have tons of sunglasses that she will definitely be forced

to wear now! :-)

Thanks again!

Ashlee

Re: Madison has Iritis! and questions

Ashlee-

A slow taper does work best. But Madison does not necessarily need to be

on

Pred Forte for years. My daughter has had flares which have been pretty

quickly controlled. After a taper lasting a few months, she has been

fine for

long periods of time. It's when the inflammation returns every time

you taper

that you need to accept a more long-term course of treatment, with the

drops

and possible with other meds. Personally, I don't feel comfortable

relying

on pred forte for extended periods of time, unless the dosage is

minimal . . .

like one or two drops per day. There are too many risks associated

with

long-term usage of the drops. has just started back on

methotrexate for

her eyes (her arthritis is in remission). B/c there are no iritis

specialists

in my state, and I was uncomfortable with the ongoing use of Pred

Forte, I

had to push for this, and get 's rheumy involved to convince the

opthamologist it was necessary. I agree with the other email that it's

so important

to stay on top of this and not to just accept the status quo when

there's

ongoing inflammation.

Re symptoms you can see . . . usually no. There can be redness, pain

or

light sensitivity, but not usually unless it's really advanced.

Re time between appointments, I push for every two months even when the

iritis is controlled. 's doctor seems content to go with the

pre-iritis

every 3-4 months, which makes no sense to me. Every time I let my

guard down

and allow that long between appointments, there's a flare and I have to

wonder

how long it was there. Once she's had one flare, you can bet she'll

have

another, and since you can't see a flare, she needs to be examined as

often as

possible. At least that's what I think :-)

Good luck!

Diane (, 6, pauci in remission, iritis)

February 22, 2006

Amen Diane....My daughter had cataract surgery this last summer......Only 850

drops of pred forte' can cause cataract. Cataract surgery on uveitis patients

is risky. The surgery put my daughter in one heck of a flare that made the

other eye go BONKERS. It turned her uveitis into pan.

dbornscheu@... wrote: Ashlee-