Guest guest Posted July 28, 2008 Report Share Posted July 28, 2008 marie Grant is on MTX subq right now and his eyes have been good. Just recently he hasn't been tolerating his MTX very well and our rheumy has said that Humira will be our next step. It seems to work well for the eyes. I don't think that Remicade is FDA approved for use in children with Uveitis. I was just on the national psoriasis foundation website and it isn't approved for children with PsA either. I remember our rheumy talking about REmicade too but don't remember exactly why they don't use it. We see him on Wed. and I'll ask him then. Wish I could be more helpful. Just curious - what was the inflammation level in Bradley's eyes. & Grant (11, PsA/Uveitis) > > > > Well we went to the Ophthamologist today for a recheck and Bradley's > inflammation is down but not enough to where the doc would like to see > with just the drops so he called the Rheumy and she decided to put > Bradley on Humira. I haven't heard a lot about this drug but will do > my research into it. I'm surprised that they didn't go with the > Remicade as I have heard good things about the Remicade and the MTX > together so I will ask her when we see her on the 5th. Has anybody > whose child has Uveitis ever tried Humira or is anybody on Humira to > help with Uveitis? I could really use your stories to get a better > feel for it. I know it will be injectable every 2 weeks subcu just > like the MTX. I just hope it is effective in helping with his eyes. > So, now we just wait, still on the drops 4x a day and patching. We go > see the Rheumy on the 5th and the Ophtho on the 6th. > > Hope you all are having a good Friday. > > marie > > Mommy to Bradley ( Pauci JRA and Uveitis) Charlie and > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2008 Report Share Posted July 28, 2008 Hi Marie!! It is now coming full circle. I am the one who has the uveitis page on myspace. Here is a link from a conversation from a very happy parent whose child is on humira... http://p075.ezboard.com/update-on-Meghan/fuveitissupportmeeifrm6.showMessage?top\ icID=1876.topic Our kids have to try these " orphan " meds since not many are fda approved for uveitis. I have heard amazing feedback on the lx211 med that is currently being tested. I hope that it can be approved soon as well. Here is the thread that I was talking to you about earlier. I think it is an interesting on because it deals with trying to make the humira injections less painful... http://p075.ezboard.com/Painfree-Humira-Injections/fuveitissupportmeeifrm6.showM\ essage?topicID=1789.topic Hope this helps! ' & a 12 jia/uveitis From: toivonen4 <toivonen4@...> Subject: Re: Bradley update... Date: Monday, July 28, 2008, 7:32 AM marie Grant is on MTX subq right now and his eyes have been good. Just recently he hasn't been tolerating his MTX very well and our rheumy has said that Humira will be our next step. It seems to work well for the eyes. I don't think that Remicade is FDA approved for use in children with Uveitis. I was just on the national psoriasis foundation website and it isn't approved for children with PsA either. I remember our rheumy talking about REmicade too but don't remember exactly why they don't use it. We see him on Wed. and I'll ask him then. Wish I could be more helpful. Just curious - what was the inflammation level in Bradley's eyes. & Grant (11, PsA/Uveitis) > > > > Well we went to the Ophthamologist today for a recheck and Bradley's > inflammation is down but not enough to where the doc would like to see > with just the drops so he called the Rheumy and she decided to put > Bradley on Humira. I haven't heard a lot about this drug but will do > my research into it. I'm surprised that they didn't go with the > Remicade as I have heard good things about the Remicade and the MTX > together so I will ask her when we see her on the 5th. Has anybody > whose child has Uveitis ever tried Humira or is anybody on Humira to > help with Uveitis? I could really use your stories to get a better > feel for it. I know it will be injectable every 2 weeks subcu just > like the MTX. I just hope it is effective in helping with his eyes. > So, now we just wait, still on the drops 4x a day and patching. We go > see the Rheumy on the 5th and the Ophtho on the 6th. > > Hope you all are having a good Friday. > > marie > > Mommy to Bradley ( Pauci JRA and Uveitis) Charlie and > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2008 Report Share Posted July 28, 2008 , Bradley when we first took him in in April was at 3+ and his pupils weren't round anymore, they were jagged from the amount of inflammation. Now, he is at a 2+ after it had been quiet for a month so obviously he needs to be on the Humira. I think our Rheumy just didn't want to subject me having to take Bradley to infusions because I have 2 other little kids ages 2 and 5 months! At least that is what I am thinking! I am sorry about Grant and his reaction to the MTX, how long has he been on it and what symptoms has he been showing to the MTX. > > > > > > > > Well we went to the Ophthamologist today for a recheck and > Bradley's > > inflammation is down but not enough to where the doc would like to > see > > with just the drops so he called the Rheumy and she decided to put > > Bradley on Humira. I haven't heard a lot about this drug but will > do > > my research into it. I'm surprised that they didn't go with the > > Remicade as I have heard good things about the Remicade and the MTX > > together so I will ask her when we see her on the 5th. Has anybody > > whose child has Uveitis ever tried Humira or is anybody on Humira > to > > help with Uveitis? I could really use your stories to get a better > > feel for it. I know it will be injectable every 2 weeks subcu just > > like the MTX. I just hope it is effective in helping with his eyes. > > So, now we just wait, still on the drops 4x a day and patching. We > go > > see the Rheumy on the 5th and the Ophtho on the 6th. > > > > Hope you all are having a good Friday. > > > > marie > > > > Mommy to Bradley ( Pauci JRA and Uveitis) Charlie and > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 marie - Yes - a 2+ is still high. Grant went several years with undectected inflammation so I don't know what his levels were then but since we've known, he has never been more than a 1+. We just couldn't get the inflammation to go away completely until we started the MTX. That was in JAn. He did fine with it for about 4 months then started fighting the injection. He gets nauseated the day after, some weeks he actually will vomit. We've upped the folic acid to 3/day and he also takes an anti nausea med which worked one week but not really since. The actual injection stings too! Does Bradley have any of that? I really hope that the Humira starts working quickly for you!! & Grant (11, PsA/Uveitis) > > > > > > > > > > > > Well we went to the Ophthamologist today for a recheck and > > Bradley's > > > inflammation is down but not enough to where the doc would like > to > > see > > > with just the drops so he called the Rheumy and she decided to put > > > Bradley on Humira. I haven't heard a lot about this drug but will > > do > > > my research into it. I'm surprised that they didn't go with the > > > Remicade as I have heard good things about the Remicade and the > MTX > > > together so I will ask her when we see her on the 5th. Has anybody > > > whose child has Uveitis ever tried Humira or is anybody on Humira > > to > > > help with Uveitis? I could really use your stories to get a better > > > feel for it. I know it will be injectable every 2 weeks subcu just > > > like the MTX. I just hope it is effective in helping with his > eyes. > > > So, now we just wait, still on the drops 4x a day and patching. > We > > go > > > see the Rheumy on the 5th and the Ophtho on the 6th. > > > > > > Hope you all are having a good Friday. > > > > > > marie > > > > > > Mommy to Bradley ( Pauci JRA and Uveitis) Charlie and > > > > > > Quote Link to comment Share on other sites More sharing options...
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