Guest guest Posted February 1, 2000 Report Share Posted February 1, 2000 Hi Teena, I think our exchange of info here is very valuable, too. I've learned so much about JRA from parents discussing the issues their children have been through, and from the several members who themselves have or have had JRA. I'm glad the list has been helpful for you, too Good luck in locating another rheumatologist. I hope you find a good one that's not too far away. A second opinion sounds like a smart idea. yes! Josh seems to be doing well He's at school right now. Seems to be adjusting to this new dose of 17.5/20mgs of prednisone on alternating days. The tapering will be much slower and more gradual but maybe this time we'll finally be successful! As one of those long-term steroid users, this has been an issue for us for a long time. We've never gotten lower than 9mgs a day and that didn't work out. We had to more than double the dose, to control the resulting flare. It's tricky but maybe it will be easier this time around. I hope so Take care, Georgina The7thJourney@... wrote: > Georgina, > Thanx you are a world of information!! In a recent email to > you were telling about a condtion called chostochondritis my kids > suffer from this soreness in their chest area also. Not to often but they > tell me it's as if their ribs are brusied. I didn't know there was a name for > this condtion. I'am in the process of finding a new rheumy doc for our kids > cos we live so far out in the boonies ya might as well say our insurance > won't cover the rhuemy doc so it has been a battle and frustrating. > Especially now that our youngest son is showing signs of the illness also. > I'am checking into some of the resources mentioned in recent emails. My hubby > said I should shop around for another insurance one who will cover this > situation. In other words the insurance will cover everything but > Rheumatology and most people in our area think you are talking foreign > language when you say you need this kind of doctor. Oh well Hope Josh is > doing well:) > > Take care > Teena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2000 Report Share Posted April 26, 2000 I think I'm going to unsubscribe for a while as is in an unmedicated remission and things look really good for her. I will be sad to leave the list, but if she has a recurrence I will be sure to return! How do I unsubscribe? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2000 Report Share Posted April 26, 2000 Hi , Well, I've just gone to the egroups/onelist site and changed your status from 'email messages' to 'no mail/web only access.' That way, if there's ever anything that you'd like to look into on the site, you'll still be able to do so. For any other changes you can visit: http://www.ONElist.com/members/ ?group=sub Wow! I am so happy to hear that continues to do well. I think in my very first note to you, or to 's Grandpa, I mentioned that sometimes this is exactly what happens: one major occurrence and then a remission. We would all like for this to happen more frequently than it does but it's still very exciting to hear about. I wish you all the very best and send our love to Aloha, Georgina skisarahs@... wrote: > > I think I'm going to unsubscribe for a while as is in an unmedicated > remission and things look really good for her. I will be sad to leave the > list, but if she has a recurrence I will be sure to return! How do I > unsubscribe? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2000 Report Share Posted May 22, 2000 Hi all!! It's been so long since I've been able to write and also to read all of the messages from everybody. Jess has not been doing well and we've been dealing with all that brings along. She had a brief period where all seemed well, but then went down hill. She was back at the dr. last month and it is in her fingers, knees and feet. Her blood work was off also. She tested positive for ANA for the 1st time, a slight positive but it was there. We started methotrexate that week, 10 mg. a week, but haven't had much, if any, improvement. I think when we go back the 23rd they'll up the dosage. She takes it Fri. evenings and then doesn't feel very well till Tues. She also started folic acid at the same time, I think that has kept her from feeling worse from the metho. I have had to change jobs to get better insurance coverage. Unfortunately, with the job and dealing with this disease I just don't have the time to sit and read all of the list. Georgina, if you could please change me to Web only I would appreciate it. It breaks my heart, because I consider this a 'support group' and I know we all need each other, I need all that I have learned from all of you, but there just aren't enough hours in the day to do everything. My support and prayers are with all of the families that are dealing with this disease and I hope some day all of our children will be healthy and strong CURED children and adults!! My best to all......Jodi Georgina wrote: > Hi , > > Well, I've just gone to the egroups/onelist site and changed your status > from 'email messages' to 'no mail/web only access.' That way, if there's > ever anything that you'd like to look into on the site, you'll still be > able to do so. For any other changes you can visit: > http://www.ONElist.com/members/ ?group=sub > > Wow! I am so happy to hear that continues to do well. I think in > my very first note to you, or to 's Grandpa, I mentioned that > sometimes this is exactly what happens: one major occurrence and then a > remission. We would all like for this to happen more frequently than it > does but it's still very exciting to hear about. > > I wish you all the very best and send our love to > > Aloha, > Georgina > > skisarahs@... wrote: > > > > I think I'm going to unsubscribe for a while as is in an unmedicated > > remission and things look really good for her. I will be sad to leave the > > list, but if she has a recurrence I will be sure to return! How do I > > unsubscribe? > > > > ------------------------------------------------------------------------ > You set the price on thousands of products. Computers, electronics, > art, home appliances and more. Visit uBid today! > 1/3026/1/_/524922/_/956774564/ > ------------------------------------------------------------------------ > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2000 Report Share Posted May 22, 2000 Sorry to hear your daughter hasn't been feeling well. I hope things will improve for you all real soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2000 Report Share Posted July 14, 2000 Georgina: Glad to hear that your doctors are actually listening to your son and trying to work with his concerns!! I find that to be a true blessing. Don't know if Ashli's doctor would ever do that. My hubby feels we should find a new doctor, but sometimes I feel It's me over reacting to not having concrete answers. This doctor is the only one now working with our local Rainbows Babies and Childrens Hospital, which is the best in our area for kids. Hate the thought of finding another doctor. Anyways, hope the new pill/shot routine works!! God Bless, Sandi A. (Ashli's mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Georgina When we first started going to this ped. rheumy he was really good about answering my question, but now since I've learned so much on line about JRA he's had a different attitude all together. He said that he hates the Internet because it gives out too much info that it shouldn't be giving. We don't have one here so I go to Florida to the Neumors Children's Clinic. This is the closest ped rheumy and it's 1 1/2 hours away. The nexy closet ped rheumy is 3 + hours away, but in the morning I'll know if we'll be going back after our visit with him. Basically for all the best treatments for our children we have to leave the state of Mississippi because we sucks when it comes to our children and the best interest of them. Don't get me wrong I don't mind traveling for the best my children, but I'm tired of all this traveling for stuff we should have in our state. I have 2 other children that barely sees me because of the traveling with Drese, but they are very understanding little boys about this.Sometime I might let them miss school and take them just so I can spend some time with them. My mom's been keeping them and making sure their needs are met for me, but sometimes they need to spend time with their mother. Yes she's taking 2 folic acids pills a day. No they didn't cite a refernce but said because mtx is a chemo drug that that's one of the side affect of either giving you mouth sores or little burn marks on the skin. But I'll know for sure tomorrow when I go to the rheumy what's going on with her skin he's a dermatologist too. I think it's her excema acting up on her feet so I 've been using elcon lotion on her foot, but it didn't do nothing for other body parts. Oh yeah she's still taking her vioxx,singulair, motrin, folic acid for the arthritis. Yes it's gotten worse, but we're going to the rheumy in the morning and see what he's gonna do all this mess I think I've made.She more stiff now that she's off the MTX, so I see now that I've made a huge mistake of taking her off her mmtx without consulting the rheumy. Won't try this again. Ywellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2001 Report Share Posted January 2, 2001 Georgina, I could you please help me find some in of on sleep disorders. We went to the rheumy today and he dxed Drese with Psoaritis instead of those being burns that what that was. He gave me meds for that and her scalp too, because hse has it in their also. Oh yeah her also increased her mtx even after telling him that I stopped it. He said it was time to increase it be cause of the way her jra is going. We sat down and he discussed her entire med. condition, so I guess for now we'll be staying with him. He also put her on partial homebound until we get the sleep disorder, seizures and jra under control which I think will work out just fine for now. He says her case is very different from others he's treated, but will continue working with her ped. here in town to get everything under control. If the increase in mtx doesn't work he's talking about injecting the mtx, but I don't think I can do that nor do I think Drese will let me do it either. Sorry for all the rambling. Ywellen Quote Link to comment Share on other sites More sharing options...
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