Joanne Posted March 4, 2009 Share Posted March 4, 2009 She meets with her Rheumatoligist once a year, minimum, and the PA quarterly. It's been 3 years since she's been diagnosed - can you believe that?? Her wrists, fingers and hips are good. Her ankles and knees are not. Her knees are especially bad. Her range of motion is limited, her gait off due to compensation. Her DR is upping her dose of methotraxate. That's a pretty hard core drug and she's also taking Enbrel; also hardcore. She's anemic, too. She has dealt with stiffness and pain for such a large percentage of her life that she doesn't know what normal feels like. I *gulp* asked for the paperwork for a handicapped placard. It's hard sometimes for her. It's really bad when it'4 raining. She falls easily and hyper-extends painfully and gets bruised. I have resisted getting one but I think we can legitimately use one sometimes. I was hoping the onset of puberty would help with her JRA; sometimes it does. So far with her it hasn't. Quote Link to comment Share on other sites More sharing options...
Rich with Kids Posted March 4, 2009 Share Posted March 4, 2009 :grouphug: A lot. Quote Link to comment Share on other sites More sharing options...
Kim in Appalachia Posted March 4, 2009 Share Posted March 4, 2009 :grouphug: I honestly can't imagine all she is going through. Hugs to you both. And I would not hesitate in getting the handicap card. Quote Link to comment Share on other sites More sharing options...
chickenpatty Posted March 4, 2009 Share Posted March 4, 2009 :grouphug: That is so hard. Hugs to you and your dd. Quote Link to comment Share on other sites More sharing options...
Remudamom Posted March 4, 2009 Share Posted March 4, 2009 Before we found a good treatment for my arthritis I had a handicapped card. I got rid of it when I could get around. It was a help. Quote Link to comment Share on other sites More sharing options...
Reesegirl Posted March 4, 2009 Share Posted March 4, 2009 Hi Joanne, I am so sorry that you and your daughter are walking this path too! How old is she? My daughter who is 17 was diagnosed last fall with RA. She has pain in her hands and sometimes in her hips. She just stopped taking paquinell (sp?) because it wasn't doing anything to help after 4 months. Her rhumatologist is now sending her to a juvenile specialist in another week and a half. I know what you mean when you say that she doesn't know what it feels like to not be in pain. It is so hard to accept that life will be like this. My daughter is planning to go to college in the fall about 500 miles away and I desperately want to have her find something that will give her quality life before she leaves...I just kind of feel like time is ticking. Methotraxate is what the doctor was going to perscribe but wants her to see a specialist before she starts taking this...I do not like the sound of the side effects. How is your daughter doing on this medicine? Loreen Quote Link to comment Share on other sites More sharing options...
Remudamom Posted March 4, 2009 Share Posted March 4, 2009 I was on the Mex for a while, it worked great for a bit and then didn't help anymore. No side effects here. Ya'll hang in there with your dds. If I can walk again and be pain free miracles can happen. Quote Link to comment Share on other sites More sharing options...
Lovedtodeath Posted March 4, 2009 Share Posted March 4, 2009 :grouphug: And goodness yes! Get the handicapped placard!:grouphug: I am so sorry for her suffering. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted March 4, 2009 Share Posted March 4, 2009 :grouphug: Quote Link to comment Share on other sites More sharing options...
CalicoKat Posted March 4, 2009 Share Posted March 4, 2009 :grouphug: get the card. I wish I'd have known to do this before I found enbrel. Save her energy for other stuff. Quote Link to comment Share on other sites More sharing options...
JudoMom Posted March 4, 2009 Share Posted March 4, 2009 She meets with her Rheumatoligist once a year, minimum, and the PA quarterly. It's been 3 years since she's been diagnosed - can you believe that?? Her wrists, fingers and hips are good. Her ankles and knees are not. Her knees are especially bad. Her range of motion is limited, her gait off due to compensation. Her DR is upping her dose of methotraxate. That's a pretty hard core drug and she's also taking Enbrel; also hardcore. She's anemic, too. She has dealt with stiffness and pain for such a large percentage of her life that she doesn't know what normal feels like. I *gulp* asked for the paperwork for a handicapped placard. It's hard sometimes for her. It's really bad when it'4 raining. She falls easily and hyper-extends painfully and gets bruised. I have resisted getting one but I think we can legitimately use one sometimes. I was hoping the onset of puberty would help with her JRA; sometimes it does. So far with her it hasn't. :grouphug::grouphug::grouphug: to you & your dd. As a Mom of a JRA patient, I know how hard it is to watch them suffer. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.