eyes

[Guest guest]

a sjogrens specialist says my dry yes is not sjogrens...the eye doc says its

just dry eye that needs steroids sometimes for inflamation ?? I could go to a

doc for every organ and wait and wait and then hear blh blah blah.

WHat ever

Liz

[Guest guest]

My son just had his eyes checked (yearly) and they found that both of his

optical nerves were swollen. Had an MRI right away, things showed up okay. His

rhem. Dr. thought it might have something to do with going up and down, so often

on his steroids. Now yesterday his shins were covered in bruises that weren't

there 2 days ago? I am getting a little worried about him at the moment, too

many new issues popping up!

>

>

>

>

> I get irritated dry eyes that get inflamed and need steroid eye drops. Once

the eye doctor said it was iritis...I had the type of JRA that usually does not

effect the eyes....( fevers and many joints inflamed...Stills...) but lo and

behold after many years with this my eyes started getting annoyed. I use

restasis and I do use moisure drops too.

>

>

> Hugs

>

> Liz

>

>

>

>

>

[Guest guest]

,

Sorry to hear about the troubles with your son's health. I actually get bruises

on my shins that seemingly come from no where or very little trauma. I also get

them on the forearms as well I would just get some routine blood work done to

check for anemia or something like that low platelet counts. Hopefully it is

nothing serious. I get these kinds of bruises as well and nothing else has come

of them to this point so I hope the same in your son's case.. I actually went

and saw my Eye Dr. yesterday. He said I have dry eyes. They did a tear test to

see how long the tear break up time is, and mine was a 4 when it should be 10 or

greater. Funny thing is the night before I always watch Mystery Diagnosis and a

lay with Sjorgen's was on there and I do believe the test she had on there was a

4 as well. Eye Dr. didn't act like it was too big of a deal said the winter is

the worse and gave me some artificial tears. I guess if it is no bettor in

spring I may have it looked into more if it stays the same or gets worse. He

said some of the meds I am on can cause dry eyes. I

aka Jalee

One in a Million

My son just had his eyes checked (yearly) and they found that both of his

optical nerves were swollen. Had an MRI right away, things showed up okay. His

rhem. Dr. thought it might have something to do with going up and down, so often

on his steroids. Now yesterday his shins were covered in bruises that weren't

there 2 days ago? I am getting a little worried about him at the moment, too

many new issues popping up!

[Guest guest]

Thanks for writing back on this! It just helped to get it out! We had blood draw

yesterday, and they were sent to his doc at Mayo. So we will see what he says

later on today! His bruises are gone....or at least some of them, it really

doesn't look that bad anymore. I'm sure it's nothing too much to worry about,

since you have seen the same kind of things. That helps to know! I don't usually

write, or even look on here, but wow...just to hear that he's not alone helps a

lot! We go back to the eye doc in a week or so, so we will ask about his dry

eyes, cause that kinda makes sense! There are just so many new things popping up

all of the sudden, it just unnerves me! Being just 9, and not being able to be a

normal kid, is just hard to watch as a mom, but I can't imagine what it's like

it actually be going thru it! Thanks for your comments, it calmed my " mom "

worries

>

> ,

>

> Sorry to hear about the troubles with your son's health. I actually get

bruises

> on my shins that seemingly come from no where or very little trauma. I also

get

> them on the forearms as well I would just get some routine blood work done to

> check for anemia or something like that low platelet counts. Hopefully it is

> nothing serious. I get these kinds of bruises as well and nothing else has

come

> of them to this point so I hope the same in your son's case.. I actually went

> and saw my Eye Dr. yesterday. He said I have dry eyes. They did a tear test to

> see how long the tear break up time is, and mine was a 4 when it should be 10

or

> greater. Funny thing is the night before I always watch Mystery Diagnosis and

a

> lay with Sjorgen's was on there and I do believe the test she had on there was

a

> 4 as well. Eye Dr. didn't act like it was too big of a deal said the winter is

> the worse and gave me some artificial tears. I guess if it is no bettor in

> spring I may have it looked into more if it stays the same or gets worse. He

> said some of the meds I am on can cause dry eyes. I

>

>

> aka Jalee

> One in a Million

>

>

>

>

>

>

> My son just had his eyes checked (yearly) and they found that both of his

> optical nerves were swollen. Had an MRI right away, things showed up okay. His

> rhem. Dr. thought it might have something to do with going up and down, so

often

> on his steroids. Now yesterday his shins were covered in bruises that weren't

> there 2 days ago? I am getting a little worried about him at the moment, too

> many new issues popping up!

>

>

>

>

>

[Guest guest]

,

I am glad that we were able to help you when you need it the most. This group is

a wonderful and very supportive network. Still's is rare disease and we need all

the support. Everyone has something to share that will be able to help someone.

aka Jalee

One in a Million

________________________________

To: Stillsdisease

Sent: Fri, December 10, 2010 9:20:58 AM

Subject: Re: eyes

Thanks for writing back on this! It just helped to get it out! We had blood draw

yesterday, and they were sent to his doc at Mayo. So we will see what he says

later on today! His bruises are gone....or at least some of them, it really

doesn't look that bad anymore. I'm sure it's nothing too much to worry about,

since you have seen the same kind of things. That helps to know! I don't usually

write, or even look on here, but wow...just to hear that he's not alone helps a

lot! We go back to the eye doc in a week or so, so we will ask about his dry

eyes, cause that kinda makes sense! There are just so many new things popping up

all of the sudden, it just unnerves me! Being just 9, and not being able to be a

normal kid, is just hard to watch as a mom, but I can't imagine what it's like

it actually be going thru it! Thanks for your comments, it calmed my " mom "

worries

>

> ,

>

> Sorry to hear about the troubles with your son's health. I actually get

bruises

>

> on my shins that seemingly come from no where or very little trauma. I also

get

>

> them on the forearms as well I would just get some routine blood work done to

> check for anemia or something like that low platelet counts. Hopefully it is

> nothing serious. I get these kinds of bruises as well and nothing else has

come

>

> of them to this point so I hope the same in your son's case.. I actually went

> and saw my Eye Dr. yesterday. He said I have dry eyes. They did a tear test to

> see how long the tear break up time is, and mine was a 4 when it should be 10

>or

>

> greater. Funny thing is the night before I always watch Mystery Diagnosis and

a

>

> lay with Sjorgen's was on there and I do believe the test she had on there was

>a

>

> 4 as well. Eye Dr. didn't act like it was too big of a deal said the winter is

> the worse and gave me some artificial tears. I guess if it is no bettor in

> spring I may have it looked into more if it stays the same or gets worse. He

> said some of the meds I am on can cause dry eyes. I

>

>

> aka Jalee

> One in a Million

>

>

>

>

>

>

> My son just had his eyes checked (yearly) and they found that both of his

> optical nerves were swollen. Had an MRI right away, things showed up okay. His

> rhem. Dr. thought it might have something to do with going up and down, so

>often

>

> on his steroids. Now yesterday his shins were covered in bruises that weren't

> there 2 days ago? I am getting a little worried about him at the moment, too

> many new issues popping up!

>

>

>

>

>

[Guest guest]

-

Sorry to hear you're son has to deal with Still's/JRA-

I am 45 and have had it since 15- I live a relatively normal and healthy life.

However, this year the disease flared and started to affect my eyes and joints-

Have you been to the Opthamologist? The typical flare affecting eyes is usually

termed Iritis or Uveitis. Just mentioning it as you indicated he had

inflammation of the optic nerves- it should be narrowed down by an Optho to the

specific area of the eye- just asking or mentioning b/c per my Optho and Rheumy-

they indicated Optic Neuritis is different than Iritis/Uveitis- and that

underlying Stills/JRA is the likely root cause of Iritis. They both indicated

if I presented with Optic Neuritis that they would be looking for a another

underlying culprit. This disease can attack/affect any part of the body- so it

could theoretically attack the optic nerves; just wanted to give you my 2 cents

so you can gather more info, google and ask more questions of his MDs. I've

been relatively well controlled via Steroid drops and a low dose oral steroid.

Give him lots of love and reassurance which I am sure you are doing. -Larry

[Guest guest]

Thanks for you care and concern! He is 9 years old, and has had Still's since he

was 4. We just can't get it under control! His Rhem. said it's one of his 5

worst cases he has had, and that's from a Mayo clinic Dr.! He started off with

just the rashes and high fever, so they thought we could get it under control

with in a year.....it's been a rollercoaster ever since! Some days(or weeks)

he's just fine, then he flares(probably 1 or 2 times a month), and it can last a

couple weeks. He is pretty immobile when he's in a bad flare, not able to walk,

and even dress sometimes. He uses a wheelchair at school, and a walker at home.

He has cortisone injections in the 4 worst joints at the time. He has tried

everything, as far as meds. go. He has been on prednisone for 4 years (up and

down) and that has stunted his growth so much. Hasn't grown forever!! But as

soon as we go down, he hurts so bad, and his bowels go nuts(he also has

inflametory bowel disease). He is done with kineret shots, cause they were doing

nothing, as was embrel, but he's still on methotrexate.We started on Actemra

infusion, in June and it really seemed to be working, but then it goes

south(like everything else).Now with his eyes, it just seems like there is

always something new to be worried about! We did go to an opthamologist, he was

worried at first, but after everything was sent to Mayo, and things looked okay,

he felt better! We go back on Monday for a recheck, and I will ask about your

suggestions! Through at all, he has been SUCH a trooper, he is amazing! Never

complains, and just goes with whatever we try to do! You can't parent an

attitude like that, it comes straight from GOD!! We wouldn't get through many

days without Him helping us through! Thanks again for your concern and taking

the time to write down suggestions! This is such a great place to come for

encouragement! Hope you are feeling okay, and get back to feeling more normal

>

> -

> Sorry to hear you're son has to deal with Still's/JRA-

> I am 45 and have had it since 15- I live a relatively normal and healthy life.

However, this year the disease flared and started to affect my eyes and joints-

Have you been to the Opthamologist? The typical flare affecting eyes is usually

termed Iritis or Uveitis. Just mentioning it as you indicated he had

inflammation of the optic nerves- it should be narrowed down by an Optho to the

specific area of the eye- just asking or mentioning b/c per my Optho and Rheumy-

they indicated Optic Neuritis is different than Iritis/Uveitis- and that

underlying Stills/JRA is the likely root cause of Iritis. They both indicated

if I presented with Optic Neuritis that they would be looking for a another

underlying culprit. This disease can attack/affect any part of the body- so it

could theoretically attack the optic nerves; just wanted to give you my 2 cents

so you can gather more info, google and ask more questions of his MDs. I've

been relatively well controlled via Steroid drops and a low dose oral steroid.

Give him lots of love and reassurance which I am sure you are doing. -Larry

>

[Guest guest]

,

I do hope a miracle will happen and your son will have remission without much

damage, especially to his eyes! I can only imagine what you as a family must go

through to watch your child have this disease. Please know we are here for you

in love and support.

Many hugs,

To: Stillsdisease

From: knickaj@...

Subject: Re: eyes

Thanks for you care and concern! He is 9 years old, and has had Still's since he

was 4. We just can't get it under control!

[Guest guest]

Thank you very much ! He has had a great last 2 days, and we totally are

thankful for those kinda days! The Dr's think his eyes should be okay, it's his

right hip right now, that's nasty. It will have to be replaced in high school,

when he's done growing! He is such a great little man, we couldn't ask for

better! Merry Christmas!

________________________________

To: Still's group <stillsdisease >

Sent: Thu, December 16, 2010 11:56:46 PM

Subject: RE: Re: eyes

,

I do hope a miracle will happen and your son will have remission without much

damage, especially to his eyes! I can only imagine what you as a family must go

through to watch your child have this disease. Please know we are here for you

in love and support.

Many hugs,

To: Stillsdisease

From: knickaj@...

Subject: Re: eyes

Thanks for you care and concern! He is 9 years old, and has had Still's since he

was 4. We just can't get it under control!