Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Dan, I had purple and green lighting bolts in my eyes, and I had a stroke that night. I would be seeing a Dr right away. D. in OR - In , Adhikari <cakeller25@...> wrote: > > Dan, > > I would call the ophthalmologist right away. I've always been told that seeing lightening flashes and excess floaters could be a sign of serious retina problems. Definately, get it checked out! > > > > > > From: adgp9 <electrician01@...> > Subject: Re: uveitis > > Date: Tuesday, December 9, 2008, 2:16 PM > > > > > > > I have been noticing flashes of light lately. Some are of white light > that look like a flash of lightning. Others look like orange fire balls > that last a second or two. I notice them when I close my eyes before I > fall asleep. Also I have floaters, it looks like lint or dust on the > lense of my eyes. Is this uveitis? Dan > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 Kaylee was dxd with Uveitis in 2006. She did not show any signs other than being somewhat sensitive to the sun and lights sometime. Kaylee was on Pred Forte for over a year and a half and then had to have a steroid injection for it in November. We saw the Ped Opthamologist 2 weeks ago and she is already showing signs of inflammation again. The Uveitis has been more of a problem than the JA the past couple of years. Kaylee was on Enbrel and changed to Humira in hopes it will help with the Uveitis. Most of the time we can not tell when Kaylee is having a flare and don't know until we go to the Ped Opth. Right now she is going every 6 weeks to keep a close check on things and try to keep it under control. Occasionally she will complain first thing in the morning about not being able to see well and the light hurts her eyes. Hope this helps. and Kaylee, Poly, Uveitis, Osteopenia and DBD ************** The year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there. (http://music.aol.com/grammys?ncid=emlcntusmusi00000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 Hi - Grant has absolutely no symptoms when he is having a flare in his eyes. But some kids do. I'm not sure if watery eyes is one of them but I do know that red eyes are a symptom or if they are painful can be signs of a flare. Also if Abby complains that she can't see very well would be another symptom. Hope this helps! & Grant (11, psA/Uveitis) > > For those of you who have kids with eye inflammation, were there any > symptoms present when they were diagnosed? Abby's eyes water quite a > bit and she seems to rub them a lot. Her last eye appointment was in > Dec and she will go again in March. I just didn't know if there was > something that I should be looking for. > > and Abby (2 years with pauci JRA) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 Hi , I never noticed anything with my daughter at the time. In hindsight, she was always tripping over something, and even running into walls. Her eyes never presented with redness as it can in some children. I do know that the sun did bother her eyes, but again, it wasn't something that I was aware that I should have even been looking for. For her, the jia diagnoses came after the uveitis diagnoses. All you really can do is to be dilligent in eye exams, and it sounds like you are. If you have a gut feeling that something isn't right, don't feel bad for scheduling a quick check with your childs ophthamologist sooner rather than later. Wish you the best, ' & a 13 jia/uveitis From: Crawford <swcrawford3@...> Subject: Uveitis Date: Wednesday, February 11, 2009, 11:31 AM For those of you who have kids with eye inflammation, were there any symptoms present when they were diagnosed? Abby's eyes water quite a bit and she seems to rub them a lot. Her last eye appointment was in Dec and she will go again in March. I just didn't know if there was something that I should be looking for. and Abby (2 years with pauci JRA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2009 Report Share Posted February 12, 2009 Aubrey had no symptoms when diagnosed, later she did have light sensitive episode and one time her pupil looked misshaped. Very rare. Terri Uveitis For those of you who have kids with eye inflammation, were there any symptoms present when they were diagnosed? Abby's eyes water quite a bit and she seems to rub them a lot. Her last eye appointment was in Dec and she will go again in March. I just didn't know if there was something that I should be looking for. and Abby (2 years with pauci JRA) ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.234 / Virus Database: 270.10.23/1947 - Release Date: 02/11/09 18:11:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2009 Report Share Posted February 12, 2009 My daughter has never seen an opthamologist, would I have to get a referal from the ped first? The ped checked her eyes with that little handheld machine yesterday. She told me to call tomorrow for the results. From: Crawford <swcrawford3> Subject: Uveitis @group s.com Date: Wednesday, February 11, 2009, 11:31 AM For those of you who have kids with eye inflammation, were there any symptoms present when they were diagnosed? Abby's eyes water quite a bit and she seems to rub them a lot. Her last eye appointment was in Dec and she will go again in March. I just didn't know if there was something that I should be looking for. and Abby (2 years with pauci JRA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2009 Report Share Posted February 12, 2009 She need to see A pediatric opthalmologist no question on that. It is nothing a pediatric doc and check with a handheld machine. I hope you find one asap feel free to ask questions> We have been in uvietis since 2002.Terri Uveitis @group s.com Date: Wednesday, February 11, 2009, 11:31 AM For those of you who have kids with eye inflammation, were there any symptoms present when they were diagnosed? Abby's eyes water quite a bit and she seems to rub them a lot. Her last eye appointment was in Dec and she will go again in March. I just didn't know if there was something that I should be looking for. and Abby (2 years with pauci JRA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2009 Report Share Posted February 12, 2009 she needs to be looked at with a slit lamp, and in most states only ophthalmologists do this. Look for a peds oph, or ask for a referral from your pediatrician if your insurance needs that. ' & a 13 jia/uveitis From: Crawford <swcrawford3> Subject: Uveitis @group s.com Date: Wednesday, February 11, 2009, 11:31 AM For those of you who have kids with eye inflammation, were there any symptoms present when they were diagnosed? Abby's eyes water quite a bit and she seems to rub them a lot. Her last eye appointment was in Dec and she will go again in March. I just didn't know if there was something that I should be looking for. and Abby (2 years with pauci JRA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2009 Report Share Posted February 12, 2009 I just want to let all of you suffering from uvitis that I pray for you every single day. Hannah had her annual eye exam today and while we do not see a ped ophthalmologist the eye doctor did check her eyes for cells and explained to Hannah what they are and showed her a picture of what they look like. I commented about some of you here and how some eye doctors have no clue what they are looking for. He was appalled and said EVERY eye doctor should know how to check for iritis and uvitis, even if they are not equipped to treat it (he would refer Hannah to someone else immediately if he saw anything suspicious) and be diligent in checking in kids with JRA and kids like Hannah especially who have never been given a real diagnosis. Feeling blessed to have yet another great doc on our " doctor team " caring for Hannah. Beth & Hannah, 12, unspecified arthritis; asthma; gerd; migraines; vit d deficiency Beth " We can't direct the wind, but we can adjust our sails " -author unknown ________________________________ From: " maydo65@... " <maydo65@...> Sent: Wednesday, February 11, 2009 7:49:37 PM Subject: Re: Uveitis Kaylee was dxd with Uveitis in 2006. She did not show any signs other than being somewhat sensitive to the sun and lights sometime. Kaylee was on Pred Forte for over a year and a half and then had to have a steroid injection for it in November. We saw the Ped Opthamologist 2 weeks ago and she is already showing signs of inflammation again. The Uveitis has been more of a problem than the JA the past couple of years. Kaylee was on Enbrel and changed to Humira in hopes it will help with the Uveitis. Most of the time we can not tell when Kaylee is having a flare and don't know until we go to the Ped Opth. Right now she is going every 6 weeks to keep a close check on things and try to keep it under control. Occasionally she will complain first thing in the morning about not being able to see well and the light hurts her eyes. Hope this helps. and Kaylee, Poly, Uveitis, Osteopenia and DBD ************ ** The year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there. (http://music. aol.com/grammys? ncid=emlcntusmus i00000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 My daughter has just been diagnosed with Uveitis - she was diagnosed Poly in september last year and had steroid injections and started MTX and thing have been great with no symptoms till a few weeks ago - she's having a flare and the joints are creaping back I feel like we're back at square 1 again!!!! Then on top of that she was diagnosed with Uveitis at her monthly eye screening check - I felt gutted but didn't have the sense to ask questions at the time - I just wanted to get out to the car before I burst into tears in the hospital!!! Can someone tell me what I'm up against? She's been prescribed Vexol eye drops every 2 hours/6 times a day and asked to return next week to be checked again Scared xxxxxxxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 Hi , I'm sorry about the uveitis diagnoses. I can tell you what happened with my daughter. The uveitis became a bigger monster than the arthritis in the body. I found out that a higher dose of meds was needed to quiet the uveitis, and it took several med changes to find the right one. We started the systemic meds in 2003 (steroids were started in 2002 however) steroids were finally stopped in 2006, and all meds discontinued in 2008. She does take one eye drop, xibrom (nsaid) for water in the middle of the eye called cystoid macular edema. She is in remission. Fight this aggressively. If anyone tells you it will burn out, not to worry, run away from them. If anyone tells you that cataracts are not a big deal, again, run far away. Steroid eye drops will cause cataracts over a period of time. The drops are needed, but hopefully the medicine will start working (methotrexate or some other dmard) and the drops slowly tapered off of. I don't want to give you a bunch of info that will upset you. Just stay the course, and take one step at a time. Having a knowledgable Dr. leading the way will set your mind at ease. uosg.org is loaded with information right down to having a uveitis handbook for school teachers/ friends/ family...who ever needs to get an idea what your child is going through. You can print it out right from the site. Let me know if I can help in anyway. You can get this quiet, and into remission. Having JIA as well makes it one tough battle, but it can be won! ' & a 13 jia/uveitis From: <atomicblonde@...> Subject: Uveitis Date: Saturday, June 20, 2009, 1:47 PM My daughter has just been diagnosed with Uveitis - she was diagnosed Poly in september last year and had steroid injections and started MTX and thing have been great with no symptoms till a few weeks ago - she's having a flare and the joints are creaping back I feel like we're back at square 1 again!!!! Then on top of that she was diagnosed with Uveitis at her monthly eye screening check - I felt gutted but didn't have the sense to ask questions at the time - I just wanted to get out to the car before I burst into tears in the hospital!!! Can someone tell me what I'm up against? She's been prescribed Vexol eye drops every 2 hours/6 times a day and asked to return next week to be checked again Scared xxxxxxxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 Thanks The strange thing is that Amy doesn't show any symptoms of Uveitis - her eyes look normal and when we went for the eye screening one eye was spot on with vision and the other failed to see the last smallest picture - that even I struggled to see wearing contacts!!!! I knew something was up when the examiner got a magnifying thingy and started examining Amy's eyes in more detail than the previous appointments So what type of Uveitis are we dealing with - cause I know there are a few different types - is it always the same one with JRA? xxxxxxxx From: [mailto: ] On Behalf Of ' Taunton Sent: 21 June 2009 01:41 Subject: Re: Uveitis Hi , I'm sorry about the uveitis diagnoses. I can tell you what happened with my daughter. The uveitis became a bigger monster than the arthritis in the body. I found out that a higher dose of meds was needed to quiet the uveitis, and it took several med changes to find the right one. We started the systemic meds in 2003 (steroids were started in 2002 however) steroids were finally stopped in 2006, and all meds discontinued in 2008. She does take one eye drop, xibrom (nsaid) for water in the middle of the eye called cystoid macular edema. She is in remission. Fight this aggressively. If anyone tells you it will burn out, not to worry, run away from them. If anyone tells you that cataracts are not a big deal, again, run far away. Steroid eye drops will cause cataracts over a period of time. The drops are needed, but hopefully the medicine will start working (methotrexate or some other dmard) and the drops slowly tapered off of. I don't want to give you a bunch of info that will upset you. Just stay the course, and take one step at a time. Having a knowledgable Dr. leading the way will set your mind at ease. uosg.org is loaded with information right down to having a uveitis handbook for school teachers/ friends/ family...who ever needs to get an idea what your child is going through. You can print it out right from the site. Let me know if I can help in anyway. You can get this quiet, and into remission. Having JIA as well makes it one tough battle, but it can be won! ' & a 13 jia/uveitis From: <atomicblonde@... <mailto:atomicblonde%40sky.com> > Subject: Uveitis <mailto: %40> Date: Saturday, June 20, 2009, 1:47 PM My daughter has just been diagnosed with Uveitis - she was diagnosed Poly in september last year and had steroid injections and started MTX and thing have been great with no symptoms till a few weeks ago - she's having a flare and the joints are creaping back I feel like we're back at square 1 again!!!! Then on top of that she was diagnosed with Uveitis at her monthly eye screening check - I felt gutted but didn't have the sense to ask questions at the time - I just wanted to get out to the car before I burst into tears in the hospital!!! Can someone tell me what I'm up against? She's been prescribed Vexol eye drops every 2 hours/6 times a day and asked to return next week to be checked again Scared xxxxxxxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 It is almost always iritis, inflammation in the anterior or front of the eye with jia. I say almost because nothing ever fits into one box with these diseases. If left undected, it can move into any part of the eye. By the time we figured out something was wrong with my daughters vision it was into the middle of the eye as well as the anterior. They call that pars planitis or irodcylitis, or whatever lol I only knew something was wrong because one of her blue eyes turned green, and that was from all of the cells flooding into her eye. She had a vitreous hemmorhage. The Dr. said she probably had it since she was a toddler. After she had cataract surgery at the age of 9 on one eye, plus a vitrectomy, she had the biggest flare in her life. She was sicker than a dog, and the inflammation spread not only to the front and middle, but to the back. That is when the war got really tough. They put her on pulse steroid iv therapy for 3 days, and it stopped the posterior uveitis. The damage to her eyes due to all of the flares is kinda harsh. She thinks she sees great. She never saw wonderfully to begin with, so she has nothing to compare it to. Her band keratopathy (scarring on the cornea) is giving her some trouble right now, but that can be fixed. She continues to get secondary cataracts, but that can also be fixed by laser. She has already had 3 of them. I'm not sure how many she can have. But, she is a happy girl who does very well in school, and started playing sports this last year. She couldn't really do that before with her infusion schedule. I'm rambling! ' and a 13 jia/uveitis From: <atomicblonde@ sky.com <mailto:atomicblond e%40sky.com> > Subject: Uveitis @group s.com <mailto:jra- list%40grou ps.com> Date: Saturday, June 20, 2009, 1:47 PM My daughter has just been diagnosed with Uveitis - she was diagnosed Poly in september last year and had steroid injections and started MTX and thing have been great with no symptoms till a few weeks ago - she's having a flare and the joints are creaping back I feel like we're back at square 1 again!!!! Then on top of that she was diagnosed with Uveitis at her monthly eye screening check - I felt gutted but didn't have the sense to ask questions at the time - I just wanted to get out to the car before I burst into tears in the hospital!!! Can someone tell me what I'm up against? She's been prescribed Vexol eye drops every 2 hours/6 times a day and asked to return next week to be checked again Scared xxxxxxxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 Hi - Grant has never shown any symptoms of Uveitis either. That is why the regular eye exams are so important, because the only way we know if there is inflammation in his eyes are by seeing the ped opth and him doing the slit lamp exam. I reiterate what said about treating uveitis agressively. I would ask your ped opth how long they plan to treat the uveitis with only the drops. Since she is already on MTX maybe they can just increase her dose and that will work. I needed to be very clear with our ped opth that I wanted to try something other than just the drops. I know that we started on the MTX a lot sooner than he would have ever suggested on his own. The website suggested is very helpful. You can even email Dr. questions. I have done that many times throughout the 2 years we have been dealing with this. Mostly just to make sure our Ped Opth was doing the right things. It helped to give me peace of mind. By the way, You are lucky you got out to your car before you burst into tears. I once broke down right in front of the doctor, and GRANT! Tried as hard as I could not to but it was just one of those days. Keep us posted and feel free to ask any questions on this! & Grant (12, PsA/Uveitis) Uveitis has been more difficult for us than the JA. > > From: <atomicblonde@... <mailto:atomicblonde%40sky.com> > > Subject: Uveitis > <mailto: %40> > Date: Saturday, June 20, 2009, 1:47 PM > > My daughter has just been diagnosed with Uveitis - she was diagnosed Poly in > september last year and had steroid injections and started MTX and thing > have been great with no symptoms till a few weeks ago - she's having a flare > and the joints are creaping back > > I feel like we're back at square 1 again!!!! > > Then on top of that she was diagnosed with Uveitis at her monthly eye > screening check - I felt gutted but didn't have the sense to ask questions > at the time - I just wanted to get out to the car before I burst into tears > in the hospital!!! > > Can someone tell me what I'm up against? > > She's been prescribed Vexol eye drops every 2 hours/6 times a day and asked > to return next week to be checked again > > Scared > > > xxxxxxxx > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 na started Remicade last Friday for her Uveitis. Her arthritis has been in remission for over a year. It's the Uveitis that's the problem. She was switched from MTX pills to MTX injections but it hasn't worked. So hopefully the Remicade infusions will. She has a small spot of Cataract now. She is on Predforte drops right now. You can't tell when she flares. Sometimes she will itch her eye. The only time I saw anything weird was when she was at what her Optho called lvl 4. When she watched TV or played on the computer her eye would get red. That was only when it was really bad. She had it several times before I finally freaked and told the docs to do something more besides send us home with more drops. Be very vigilant and use your intuition. Now that she is on the Remicade, her Optho said is glad as she probably would have had to have surgery before she was 8 yrs. ne & na 5yrs. JIA Uveitis (MTX, Remicade, Predforte drops) > > From: <atomicblonde@ sky.com <mailto:atomicblond e%40sky.com> > > Subject: Uveitis > @group s.com <mailto:jra- list%40grou ps.com> > Date: Saturday, June 20, 2009, 1:47 PM > > My daughter has just been diagnosed with Uveitis - she was diagnosed Poly in > september last year and had steroid injections and started MTX and thing > have been great with no symptoms till a few weeks ago - she's having a flare > and the joints are creaping back > > I feel like we're back at square 1 again!!!! > > Then on top of that she was diagnosed with Uveitis at her monthly eye > screening check - I felt gutted but didn't have the sense to ask questions > at the time - I just wanted to get out to the car before I burst into tears > in the hospital!!! > > Can someone tell me what I'm up against? > > She's been prescribed Vexol eye drops every 2 hours/6 times a day and asked > to return next week to be checked again > > Scared > > > xxxxxxxx > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 People don't cope well with crying - so I made a rule to avoid it... once a mother of a class mate of my deceased son said something that set me off and she looked terrified and like she wanted to run away!! I always said that she asked for that - don't make someone cry if you can't deal with it... found out later she works in a hospice!! I feel lucky to have routine monthly eye checks - I have phoned and asked the Orthoptist consultant to ring me tomorrow so I can ask the questions needed Also this week we hope to get to see the rheumy who wants to start Amy on MTX injections weekly instead of having it orally and maybe start steroid tablets again Joy Love xxxxxxxxxx From: [mailto: ] On Behalf Of toivonen4 Sent: 22 June 2009 16:20 Subject: Re: Uveitis Hi - Grant has never shown any symptoms of Uveitis either. That is why the regular eye exams are so important, because the only way we know if there is inflammation in his eyes are by seeing the ped opth and him doing the slit lamp exam. I reiterate what said about treating uveitis agressively. I would ask your ped opth how long they plan to treat the uveitis with only the drops. Since she is already on MTX maybe they can just increase her dose and that will work. I needed to be very clear with our ped opth that I wanted to try something other than just the drops. I know that we started on the MTX a lot sooner than he would have ever suggested on his own. The website suggested is very helpful. You can even email Dr. questions. I have done that many times throughout the 2 years we have been dealing with this. Mostly just to make sure our Ped Opth was doing the right things. It helped to give me peace of mind. By the way, You are lucky you got out to your car before you burst into tears. I once broke down right in front of the doctor, and GRANT! Tried as hard as I could not to but it was just one of those days. Keep us posted and feel free to ask any questions on this! & Grant (12, PsA/Uveitis) Uveitis has been more difficult for us than the JA. > > From: <atomicblonde@... <mailto:atomicblonde%40sky.com> > > Subject: Uveitis > <mailto: %40> <mailto: %40> > Date: Saturday, June 20, 2009, 1:47 PM > > My daughter has just been diagnosed with Uveitis - she was diagnosed Poly in > september last year and had steroid injections and started MTX and thing > have been great with no symptoms till a few weeks ago - she's having a flare > and the joints are creaping back > > I feel like we're back at square 1 again!!!! > > Then on top of that she was diagnosed with Uveitis at her monthly eye > screening check - I felt gutted but didn't have the sense to ask questions > at the time - I just wanted to get out to the car before I burst into tears > in the hospital!!! > > Can someone tell me what I'm up against? > > She's been prescribed Vexol eye drops every 2 hours/6 times a day and asked > to return next week to be checked again > > Scared > > > xxxxxxxx > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 I think that one of her eyes is slightly off centre - it maybe just me - but is this a symptom? xxxxxx From: [mailto: ] On Behalf Of suenkevan Sent: 22 June 2009 16:46 Subject: Re: Uveitis na started Remicade last Friday for her Uveitis. Her arthritis has been in remission for over a year. It's the Uveitis that's the problem. She was switched from MTX pills to MTX injections but it hasn't worked. So hopefully the Remicade infusions will. She has a small spot of Cataract now. She is on Predforte drops right now. You can't tell when she flares. Sometimes she will itch her eye. The only time I saw anything weird was when she was at what her Optho called lvl 4. When she watched TV or played on the computer her eye would get red. That was only when it was really bad. She had it several times before I finally freaked and told the docs to do something more besides send us home with more drops. Be very vigilant and use your intuition. Now that she is on the Remicade, her Optho said is glad as she probably would have had to have surgery before she was 8 yrs. ne & na 5yrs. JIA Uveitis (MTX, Remicade, Predforte drops) > > From: <atomicblonde@ sky.com <mailto:atomicblond e%40sky.com> > > Subject: Uveitis > @group s.com <mailto:jra- list%40grou ps.com> > Date: Saturday, June 20, 2009, 1:47 PM > > My daughter has just been diagnosed with Uveitis - she was diagnosed Poly in > september last year and had steroid injections and started MTX and thing > have been great with no symptoms till a few weeks ago - she's having a flare > and the joints are creaping back > > I feel like we're back at square 1 again!!!! > > Then on top of that she was diagnosed with Uveitis at her monthly eye > screening check - I felt gutted but didn't have the sense to ask questions > at the time - I just wanted to get out to the car before I burst into tears > in the hospital!!! > > Can someone tell me what I'm up against? > > She's been prescribed Vexol eye drops every 2 hours/6 times a day and asked > to return next week to be checked again > > Scared > > > xxxxxxxx > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 I have never seen that with na, but who knows. Is she on the dilation drops too? Maybe it just looks that way if she is. I know na's eyes look pretty different when she gets those. People always comment on how weird her eyes look. But if she isn't on the dilation drops I really don't know what could cause that. You never noticed it before? > > > > From: <atomicblonde@ sky.com <mailto:atomicblond e%40sky.com> > > > Subject: Uveitis > > @group s.com <mailto:jra- list%40grou ps.com> > > Date: Saturday, June 20, 2009, 1:47 PM > > > > My daughter has just been diagnosed with Uveitis - she was diagnosed Poly > in > > september last year and had steroid injections and started MTX and thing > > have been great with no symptoms till a few weeks ago - she's having a > flare > > and the joints are creaping back > > > > I feel like we're back at square 1 again!!!! > > > > Then on top of that she was diagnosed with Uveitis at her monthly eye > > screening check - I felt gutted but didn't have the sense to ask questions > > at the time - I just wanted to get out to the car before I burst into > tears > > in the hospital!!! > > > > Can someone tell me what I'm up against? > > > > She's been prescribed Vexol eye drops every 2 hours/6 times a day and > asked > > to return next week to be checked again > > > > Scared > > > > > > xxxxxxxx > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 A couple of things could cause the impression that one is by it being off color, cataract growing, or band keratopathy. I know a few kids that have to patch one of their eyes because one becomes dominant. That usually is for kids who have intermediate uveitis, though. It is something to let the Dr. know. Parents will catch this before any Dr. will. When one of my daughters eyes turned a different color, the Dr. couldn't even see it. He said it was so subtle to him. It was screaming at me! ' & a 13 jia/uveitis From: <atomicblonde@...> Subject: RE: Uveitis Date: Monday, June 22, 2009, 11:25 AM I think that one of her eyes is slightly off centre - it maybe just me - but is this a symptom? xxxxxx From: @group s.com [mailto: @group s.com] On Behalf Of suenkevan Sent: 22 June 2009 16:46 @group s.com Subject: Re: Uveitis na started Remicade last Friday for her Uveitis. Her arthritis has been in remission for over a year. It's the Uveitis that's the problem. She was switched from MTX pills to MTX injections but it hasn't worked. So hopefully the Remicade infusions will. She has a small spot of Cataract now. She is on Predforte drops right now. You can't tell when she flares. Sometimes she will itch her eye. The only time I saw anything weird was when she was at what her Optho called lvl 4. When she watched TV or played on the computer her eye would get red. That was only when it was really bad. She had it several times before I finally freaked and told the docs to do something more besides send us home with more drops. Be very vigilant and use your intuition. Now that she is on the Remicade, her Optho said is glad as she probably would have had to have surgery before she was 8 yrs. ne & na 5yrs. JIA Uveitis (MTX, Remicade, Predforte drops) > > From: <atomicblonde@ sky.com <mailto:atomicblond e%40sky.com> > > Subject: Uveitis > @group s.com <mailto:jra- list%40grou ps.com> > Date: Saturday, June 20, 2009, 1:47 PM > > My daughter has just been diagnosed with Uveitis - she was diagnosed Poly in > september last year and had steroid injections and started MTX and thing > have been great with no symptoms till a few weeks ago - she's having a flare > and the joints are creaping back > > I feel like we're back at square 1 again!!!! > > Then on top of that she was diagnosed with Uveitis at her monthly eye > screening check - I felt gutted but didn't have the sense to ask questions > at the time - I just wanted to get out to the car before I burst into tears > in the hospital!!! > > Can someone tell me what I'm up against? > > She's been prescribed Vexol eye drops every 2 hours/6 times a day and asked > to return next week to be checked again > > Scared > > > xxxxxxxx > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 Combination MTX and Remicade can be a wonderful med. I know that with a few of my friends the rate of infusion for Remicade had to be increased to every 4 weeks instead of every 6. Just a heads up ; ) ' & a 13 jia/uveitis From: suenkevan <susannefountain@...> Subject: Re: Uveitis Date: Monday, June 22, 2009, 8:45 AM na started Remicade last Friday for her Uveitis. Her arthritis has been in remission for over a year. It's the Uveitis that's the problem. She was switched from MTX pills to MTX injections but it hasn't worked. So hopefully the Remicade infusions will. She has a small spot of Cataract now. She is on Predforte drops right now. You can't tell when she flares. Sometimes she will itch her eye. The only time I saw anything weird was when she was at what her Optho called lvl 4. When she watched TV or played on the computer her eye would get red. That was only when it was really bad. She had it several times before I finally freaked and told the docs to do something more besides send us home with more drops. Be very vigilant and use your intuition. Now that she is on the Remicade, her Optho said is glad as she probably would have had to have surgery before she was 8 yrs. ne & na 5yrs. JIA Uveitis (MTX, Remicade, Predforte drops) > > From: <atomicblonde@ sky.com <mailto:atomicblond e%40sky.com> > > Subject: Uveitis > @group s.com <mailto:jra- list%40grou ps.com> > Date: Saturday, June 20, 2009, 1:47 PM > > My daughter has just been diagnosed with Uveitis - she was diagnosed Poly in > september last year and had steroid injections and started MTX and thing > have been great with no symptoms till a few weeks ago - she's having a flare > and the joints are creaping back > > I feel like we're back at square 1 again!!!! > > Then on top of that she was diagnosed with Uveitis at her monthly eye > screening check - I felt gutted but didn't have the sense to ask questions > at the time - I just wanted to get out to the car before I burst into tears > in the hospital!!! > > Can someone tell me what I'm up against? > > She's been prescribed Vexol eye drops every 2 hours/6 times a day and asked > to return next week to be checked again > > Scared > > > xxxxxxxx > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 I think I maybe looking for things that might have already been there - she's sooo clumsy but I keep worrying that now it's not clumsyness but deterioration of her eyesight She's on steroid vexol eye drops xxxxxx From: [mailto: ] On Behalf Of suenkevan Sent: 22 June 2009 19:41 Subject: Re: Uveitis I have never seen that with na, but who knows. Is she on the dilation drops too? Maybe it just looks that way if she is. I know na's eyes look pretty different when she gets those. People always comment on how weird her eyes look. But if she isn't on the dilation drops I really don't know what could cause that. You never noticed it before? > > > > From: <atomicblonde@ sky.com <mailto:atomicblond e%40sky.com> > > > Subject: Uveitis > > @group s.com <mailto:jra- list%40grou ps.com> > > Date: Saturday, June 20, 2009, 1:47 PM > > > > My daughter has just been diagnosed with Uveitis - she was diagnosed Poly > in > > september last year and had steroid injections and started MTX and thing > > have been great with no symptoms till a few weeks ago - she's having a > flare > > and the joints are creaping back > > > > I feel like we're back at square 1 again!!!! > > > > Then on top of that she was diagnosed with Uveitis at her monthly eye > > screening check - I felt gutted but didn't have the sense to ask questions > > at the time - I just wanted to get out to the car before I burst into > tears > > in the hospital!!! > > > > Can someone tell me what I'm up against? > > > > She's been prescribed Vexol eye drops every 2 hours/6 times a day and > asked > > to return next week to be checked again > > > > Scared > > > > > > xxxxxxxx > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 na will go for Remicade again in two weeks, then 4 and will stay at for for awhile until they think she may be in remission. I don't know how long that means. Then they will taper her every 6 to 8 and so on and hope the MTX keeps her in remission. This is the plan so far. ne > > > > From: <atomicblonde@ sky.com <mailto:atomicblond e%40sky.com> > > > Subject: Uveitis > > @group s.com <mailto:jra- list%40grou ps.com> > > Date: Saturday, June 20, 2009, 1:47 PM > > > > My daughter has just been diagnosed with Uveitis - she was diagnosed Poly in > > september last year and had steroid injections and started MTX and thing > > have been great with no symptoms till a few weeks ago - she's having a flare > > and the joints are creaping back > > > > I feel like we're back at square 1 again!!!! > > > > Then on top of that she was diagnosed with Uveitis at her monthly eye > > screening check - I felt gutted but didn't have the sense to ask questions > > at the time - I just wanted to get out to the car before I burst into tears > > in the hospital!!! > > > > Can someone tell me what I'm up against? > > > > She's been prescribed Vexol eye drops every 2 hours/6 times a day and asked > > to return next week to be checked again > > > > Scared > > > > > > xxxxxxxx > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 Thanks for the new info. I never knew that. Something to watch out for for sure that I wasn't! ne > > > > From: <atomicblonde@ sky.com <mailto:atomicblond e%40sky.com> > > > Subject: Uveitis > > @group s.com <mailto:jra- list%40grou ps.com> > > Date: Saturday, June 20, 2009, 1:47 PM > > > > My daughter has just been diagnosed with Uveitis - she was diagnosed Poly > in > > september last year and had steroid injections and started MTX and thing > > have been great with no symptoms till a few weeks ago - she's having a > flare > > and the joints are creaping back > > > > I feel like we're back at square 1 again!!!! > > > > Then on top of that she was diagnosed with Uveitis at her monthly eye > > screening check - I felt gutted but didn't have the sense to ask questions > > at the time - I just wanted to get out to the car before I burst into > tears > > in the hospital!!! > > > > Can someone tell me what I'm up against? > > > > She's been prescribed Vexol eye drops every 2 hours/6 times a day and > asked > > to return next week to be checked again > > > > Scared > > > > > > xxxxxxxx > > > > Quote Link to comment Share on other sites More sharing options...
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