Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 Would also love to heard from parents, friends and family of children with JRA. Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Welcome to the group, Holly! Best of luck to you with your new group, too! The majority of people who post here have not had RA since childhood, but we do have many lurkers. I hope you find others who share your specific interests. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] Hello everyone... > I have been searching for a long time for a site like this one. I > have had RA since childhood. Although it burned itself out when I > was a teenager I still suffer from pain due to the damage it caused. > I also wanted to post info about a support site I started for adults > who grew up with RA to share stories about then and now. The link is > jratoadulthood-subscribe . Would love to chat and > meet other adults who were diagnosed with JRA in childhood or > adolesence. Thanks and I look forward to chatting with you all. > > Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2006 Report Share Posted June 8, 2006 > > > > Hello to you all. I've missed you all more than you could ever know...I'll > be breif for i am hurting pretty bad. I'm back to recieving mail again. HUGS > love ya. > > Welcome back hope you feel less pain soon Janet IN IL > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2006 Report Share Posted June 8, 2006 , You were missed Sharon jan <smokey61080@...> wrote: > > > > Hello to you all. I've missed you all more than you could ever know...I'll > be breif for i am hurting pretty bad. I'm back to recieving mail again. HUGS > love ya. > > Welcome back hope you feel less pain soon Janet IN IL > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2006 Report Share Posted June 8, 2006 , I am always here if you ever need someone to talk to. I will keep you, and the family in my prayers. I have sure missed you, Tawny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 , it's nice to see you back. We've missed you, too. Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] Hello everyone... > > > Hello to you all. I've missed you all more than you could ever > know...I'll > be breif for i am hurting pretty bad. I'm back to recieving mail again. > HUGS > love ya. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Good Morning, New to group and hopeing to meet some new friends that can relate to what i have to go through every day of my life. I was diagnosed with RA in 1994 at the age of 32. That was 12 long years ago, but have learned to go cope with this very dibilitating disease. I have been through many doctors and medications and haven't found anything that seems to work for me. I am in the advanced stage, severe pain, fatgue, and depression. My doc is starting me on " ORENCIA " , and i'm scared to death. Is anyone familiar with this drug? My first treatment is next week, an infusion done outpatient. Ant info would be greatly appreciated.I will be glad to share my support and experiences that i have had to any one that needs a friend as well. Thanks very much, i haven't been to any of the groups until now and would appreciate any input you can offer. Have a great weekend, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Dear - Hi- I got my RA in 5/94 also at 33. I have been on every drug known for auto immune disease but gold. I take Remicade with MTX also. Your disease probably , like mine gets smart and finds a way around the TNF binding agents. Now Orencia is something that my RD has discussed with me as an alternative to remicade. The infusion takes only 30 minutes. Make sure that you have them give you the IV in your inner elbow and make sure they prep your arm with a hot towel to dilate the veins first. Works GREAT. Abatabcept as it is called is a B Cell blocker and modifies the signal that causes inflammation. New research is done by the Arthritis Foundation regarding the proteins that start the inflammatory cascade in RA. Now you might also consider researching Mycophenolate Sodium. Cyclosporine with Sirolimus. Since your body rejects itself, organ transplant rejection drugs can have a huge impact on our disease as well. I am trying remicade and MTX with cyclosporine and sirolmus right now. Abatacept is next. There are some new things on the horizon as they delve into the cellular process. One of these is research about gold compounds including platinum that deeply impact the auto immune process. www.google.com to read more. OH and FYI. Drink plenty of fluids, non caffienated during and after your infusion. Hugs, Deborah On 3/24/07, kellnlisa <kellnlisa@...> wrote: Good Morning,New to group and hopeing to meet some new friends that can relate to what i have to go through every day of my life. I was diagnosed with RA in 1994 at the age of 32. That was 12 long years ago, but have learned to go cope with this very dibilitating disease. I have been through many doctors and medications and haven't found anything that seems to work for me.I am in the advanced stage, severe pain, fatgue, and depression. My doc is starting me on " ORENCIA " , and i'm scared to death. Is anyone familiar with this drug? My first treatment is next week, an infusion done outpatient. Ant info would be greatly appreciated.I will be glad to share my support and experiences that i have had to any one that needs a friend as well. Thanks very much, i haven't been to any of the groups until now and would appreciate any input you can offer. Have a great weekend, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Hi Deborah- Thanks so much for the very in depth info, wow, i feel like i am having a consultation with a RD. I have been suffering from severe depression, chronic pain, fatigue,my RA factor is so high the scale isn't big enough to register , so my doc suggested i start on orencia, along with arava and prednisone. I have been through many drugs and doc's and i always get scared to death to try the next drug, what's the point? I haven't found a treatment that works, it seems to just have a lot of side affects that make me feel even worse. He also suggested i find a community for support, share their experiences and can relate to my day to day struggles with RA. I never thought i needed a support group, but it has really helped. Thanks so much for for sharing your mountain of knowledge with me, it has really helped. I have met some really nice people the past few weeks, most of the reviews have been positive on the orencia. My aunt has a friend that is taking the gold injections, and having good results as well. I go for the first treatment on thurs. i am trying to keep a positive outlook, and have had a lot of kind words of encouragement. The AF offers a aquatic aerobics class for arthritis here, so i'm hoping it will help with the swelling and stifness and i can start it soon.Well thanks so much for all the info, keep your fingers crossed, hopefully this is going to be the one i have been waiting to try.Take care ,Deborah Bargad <dbargad@...> wrote: Dear - Hi- I got my RA in 5/94 also at 33. I have been on every drug known for auto immune disease but gold. I take Remicade with MTX also. Your disease probably , like mine gets smart and finds a way around the TNF binding agents. Now Orencia is something that my RD has discussed with me as an alternative to remicade. The infusion takes only 30 minutes. Make sure that you have them give you the IV in your inner elbow and make sure they prep your arm with a hot towel to dilate the veins first. Works GREAT. Abatabcept as it is called is a B Cell blocker and modifies the signal that causes inflammation. New research is done by the Arthritis Foundation regarding the proteins that start the inflammatory cascade in RA. Now you might also consider researching Mycophenolate Sodium. Cyclosporine with Sirolimus. Since your body rejects itself, organ transplant rejection drugs can have a huge impact on our disease as well. I am trying remicade and MTX with cyclosporine and sirolmus right now. Abatacept is next. There are some new things on the horizon as they delve into the cellular process. One of these is research about gold compounds including platinum that deeply impact the auto immune process. www.google.com to read more. OH and FYI. Drink plenty of fluids, non caffienated during and after your infusion. Hugs, Deborah On 3/24/07, kellnlisa <kellnlisa > wrote: Good Morning,New to group and hopeing to meet some new friends that can relate to what i have to go through every day of my life. I was diagnosed with RA in 1994 at the age of 32. That was 12 long years ago, but have learned to go cope with this very dibilitating disease. I have been through many doctors and medications and haven't found anything that seems to work for me.I am in the advanced stage, severe pain, fatgue, and depression. My doc is starting me on "ORENCIA", and i'm scared to death. Is anyone familiar with this drug? My first treatment is next week, an infusion done outpatient. Ant info would be greatly appreciated.I will be glad to share my support and experiences that i have had to any one that needs a friend as well. Thanks very much, i haven't been to any of the groups until now and would appreciate any input you can offer. Have a great weekend, The fish are biting. Get more visitors on your site using Search Marketing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Hi Andi! Glad to see you posting and sharing. We won't bit - promise Memorial Day weekend was great - this Labor Day weekend we are still cleaning up water in the yard from TS Fay. I'm sorry to hear your doctor was so rude to you. I hope you have found a more compassionate one while you file the complaint against the A$$. If he's not happy with the amount of money he's making, perhaps he should consider another profession! Anyway, welcome out in the sunshine. Everyone here has been so wonderful and I say the more the merrier!....Doreen > > So, I've been a member for a while now, but was evidently too lazy > to post anything about myself till now. lol > > Anyway, my name is , most people call me Andi though. > > I'm 27, and the mother of 3 wonderful children. > > They're (almost 8), (4), and Maggie (almost 3). > > I was diagnosed with Fibromyalgia in 2001, as well as Rheumatoid > Arthritis (2005), Degenerative Disk Disease (2007). > > That's the physical stuff (well that's the Readers Digest version of > the physical lol)... > > I also have the crazy lol Social Phobia, Severe Anxiety, Obsessive > Compulsive Disorder, Mild Agoraphobia, and Moderate Depression. > > I'm in the process of filing a complaint with the state medical > board against my doctor. He consistently fails to treat me properly > for anything regarding the illnesses. He has also gone so far as to > tell me directly " I only get paid .50 on the dollar for you as a > patient so why should I order more tests and do more than I > absolutely have to " . > > YAY! > > So yeah, I try to laugh at myself because if I didn't I'd never stop > crying. I go to therapy once a week. The therapist says I need to > " increase my support network and stop isolating myself " so uhm.... > > > Here I am! lol > > Hope everyone has a happy and safe Memorial Day weekend. > Andi > Quote Link to comment Share on other sites More sharing options...
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