Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Thursday Jordan starts Enbrel. We have to be at the hospital at 11 so we can learn how to give the shots and I'm a complete wreck. I start crying when I think about what we're doing. I know we made the right decision but for the life of me I can't help but have some doubt. She seems to be totally fine with the thought and is actually looking forward to the new med. I just hope this works. How long does it usually take before we notice improvement? Her knees and toe are a little swollen but they aren't too bad. The Enbrel is more for her eyes and her ophthalmologist told me to not be too hopeful because this may not help. This is the first time in 3+ years I wasn't happy with him. He just seems real negative about the whole thing. As of right now Jordan can't go but maybe 6 weeks without an eye flare. All her ophthalmologist has done is give us the drops and we, rheumy and I, are worried about permanent damage. How do I calm myself down? My stomach is in knots and I can't eat or sleep. I've known this was coming but it's here now and I just feel sick. I know no one ever expects things to progress to this but I really thought she'd be in remission by now... Stacey, & Miss Jordan, 6 (Pauci & Uveitis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Stacey - I wish you luck today! What you are doing is a good thing. Uveitis needs to be treated aggressively and it seems that way too many opths are okay with drops to treat it. So just disregard what your Opth said. Grant's Opth is the same way. We started the MTX at my urging and our Opth actually asked me at an appt if the MTX helps his psoriasis and arthritis too. He said he doesn't know what MTX does. Shouldn't he find out since he has patients on it? I do know exactly how you are feeling and even IF Enbrel isn't the med that will work at least you are one step closer to finding the med that will work instead of just continuing with the drops and getting nowhere with horrible side effects. My thoughts and prayers are with you & Grant (11, PsA/Uveitis) > > Thursday Jordan starts Enbrel. We have to be at the hospital at 11 so > we can learn how to give the shots and I'm a complete wreck. I start > crying when I think about what we're doing. I know we made the right > decision but for the life of me I can't help but have some doubt. She > seems to be totally fine with the thought and is actually looking > forward to the new med. > > I just hope this works. How long does it usually take before we > notice improvement? Her knees and toe are a little swollen but they > aren't too bad. The Enbrel is more for her eyes and her > ophthalmologist told me to not be too hopeful because this may not > help. This is the first time in 3+ years I wasn't happy with him. He > just seems real negative about the whole thing. As of right now > Jordan can't go but maybe 6 weeks without an eye flare. All her > ophthalmologist has done is give us the drops and we, rheumy and I, > are worried about permanent damage. > > How do I calm myself down? My stomach is in knots and I can't eat or > sleep. I've known this was coming but it's here now and I just feel > sick. I know no one ever expects things to progress to this but I > really thought she'd be in remission by now... > > Stacey, > & Miss Jordan, 6 > (Pauci & Uveitis) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Hold your breathe. It will be ok. Have you all tried Methotrexate? It worked pretty good. My daughter is in total remission. Remicade does help but is a last result and is very costly...Keep us posted...>Terri and Aubrey Wish us luck!! Thursday Jordan starts Enbrel. We have to be at the hospital at 11 so we can learn how to give the shots and I'm a complete wreck. I start crying when I think about what we're doing. I know we made the right decision but for the life of me I can't help but have some doubt. She seems to be totally fine with the thought and is actually looking forward to the new med. I just hope this works. How long does it usually take before we notice improvement? Her knees and toe are a little swollen but they aren't too bad. The Enbrel is more for her eyes and her ophthalmologist told me to not be too hopeful because this may not help. This is the first time in 3+ years I wasn't happy with him. He just seems real negative about the whole thing. As of right now Jordan can't go but maybe 6 weeks without an eye flare. All her ophthalmologist has done is give us the drops and we, rheumy and I, are worried about permanent damage. How do I calm myself down? My stomach is in knots and I can't eat or sleep. I've known this was coming but it's here now and I just feel sick. I know no one ever expects things to progress to this but I really thought she'd be in remission by now... Stacey, & Miss Jordan, 6 (Pauci & Uveitis) ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG. Version: 8.0.101 / Virus Database: 270.4.1/1518 - Release Date: 6/25/2008 9:46 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 I am going to echo & say bravo! We have learned that you have to be aggressive with the uveitis. There are so many ophthalmologists just fine riding the " pred forte " train. Mine being one of them, she said " some kids never get off of it " & that didnt sit right with me. There had to be something else. So that's when we contacted Dr. & banged a little louder on our pediatric rheumy's door to get both of them on board for a " next step. " Charlotte is now on MTX & Remicade for the uveitis. She had injections for her joints back in Nov/Dec when she was 1st diagnosed & since then, nothing with the joints, she's just battling a real stinker of a stubborn uveitis diagnosis in both eyes. Her current cocktail seems to be working (minus our little 2 week virus that made a hiccup in the whole system). We have been on pred forte since november are are S L O W L Y weaning off, we are down to 3x a day righ now. I think the entire sitch STINKS, the enbrel, the remicade, it stinks to high heaven, its not fun for us to watch & deal with, but you know what.... what's the other option? Its the eyes, you know!? And if it doesnt sit right with your gut on the reaction & the complacency... listen to that voice!!!! question, research, talk & be that other dr. for her!!! Keep us posted, thinking of you!!!! (PS - have you looked for a uveitis specialist in your area? I am guessing california by your email: http://www.uveitis.org/patient/specialists/us.html#California) Take care! (Charlotte - 2.5 / Pausi & Uveitis) http://www.reece99.blogspot.com > > Thursday Jordan starts Enbrel. We have to be at the hospital at 11 so > we can learn how to give the shots and I'm a complete wreck. I start > crying when I think about what we're doing. I know we made the right > decision but for the life of me I can't help but have some doubt. She > seems to be totally fine with the thought and is actually looking > forward to the new med. > > I just hope this works. How long does it usually take before we > notice improvement? Her knees and toe are a little swollen but they > aren't too bad. The Enbrel is more for her eyes and her > ophthalmologist told me to not be too hopeful because this may not > help. This is the first time in 3+ years I wasn't happy with him. He > just seems real negative about the whole thing. As of right now > Jordan can't go but maybe 6 weeks without an eye flare. All her > ophthalmologist has done is give us the drops and we, rheumy and I, > are worried about permanent damage. > > How do I calm myself down? My stomach is in knots and I can't eat or > sleep. I've known this was coming but it's here now and I just feel > sick. I know no one ever expects things to progress to this but I > really thought she'd be in remission by now... > > Stacey, > & Miss Jordan, 6 > (Pauci & Uveitis) > Quote Link to comment Share on other sites More sharing options...
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