Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Hi Peggy, I am 30 years old and live in Novi Michigan outside of Detroit. I was diagnosed with stills in Jan of 08' and my Rhumy is in Grand Rapids. They put me on a way different path then your husband starting with Prednisone and now I am on Methotrexate, Kineret, 5mg of Prednisone and Feldene + Zantek and Prilosec. I am going back to work tomorrow and feel about 90%. I don't know if it will last but I have been happy with my Rhumy who is Dr. Ciejka and the coctail of medicine they have put me on. The name of the office is The Arthritis Treatment Center in Grand Rapids. They have a website but let me know if you want the number. Dave To: stillsdisease@...: soul2bleed@...: Sun, 18 May 2008 19:50:35 -0700Subject: Our story Hi. My name is Peggy and my husband was diagnosed with SD in September of 07. He had been extremely fit and active his entire adult life. He favorite pasttimes are tennis (hours at a time) and snowmobiling.In June we had traveled from Michigan to Florida for me to have my tubes reversed. On the trip he had complained that his shoulder hurt. When we got back he had started running low grade temps every couple of days. The pain would move from his shoulders to his knees to his back. All over. By the end of July his fevers had begun to climb in the low 100's and the pain was worse. By August I was literally picking him up off the couch. He couldnt move. We had went to the doctors and had multiple tests done. Then he started with pains in his chest also. Several trips to the ER, blood tests showing 25000 white cell count, 114 Sed rate, some other out of whack test results and 104 temp, but no one could figure out his problem. He seriously though that he was dying.He was referred to an infectious disease doctor that ran a nuclear medicine test on him. After that came back inconclusive he was immedately referred to a reumatologist in Petosky. After 20 minutes in there, he was diagnosed with Still's. Finally something could be done.Several months later....6000 mg of aspirin a day, two prilosecs and he is just barely under control. He has bad days. A lot. Most days he works and comes home and can't do anything else. When he was on 30 mg of Prednisone for a month or two he was much better. He is given nothing for pain management. The doctor feels that much aspirin a day should manage it for him. wrong. He has trouble sleeping at night and is exhausted all day long. I think the worst part for him is that he can no longer play with our 7 year old daughter as much as he used to. Well. That's our story. _________________________________________________________________ Give to a good cause with every e-mail. Join the i’m Initiative from Microsoft. http://im.live.com/Messenger/IM/Join/Default.aspx?souce=EML_WL_ GoodCause Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Hi Peggy, I am 30 years old and live in Novi Michigan outside of Detroit. I was diagnosed with stills in Jan of 08' and my Rhumy is in Grand Rapids. They put me on a way different path then your husband starting with Prednisone and now I am on Methotrexate, Kineret, 5mg of Prednisone and Feldene + Zantek and Prilosec. I am going back to work tomorrow and feel about 90%. I don't know if it will last but I have been happy with my Rhumy who is Dr. Ciejka and the coctail of medicine they have put me on. The name of the office is The Arthritis Treatment Center in Grand Rapids. They have a website but let me know if you want the number. Dave To: stillsdisease@...: soul2bleed@...: Sun, 18 May 2008 19:50:35 -0700Subject: Our story Hi. My name is Peggy and my husband was diagnosed with SD in September of 07. He had been extremely fit and active his entire adult life. He favorite pasttimes are tennis (hours at a time) and snowmobiling.In June we had traveled from Michigan to Florida for me to have my tubes reversed. On the trip he had complained that his shoulder hurt. When we got back he had started running low grade temps every couple of days. The pain would move from his shoulders to his knees to his back. All over. By the end of July his fevers had begun to climb in the low 100's and the pain was worse. By August I was literally picking him up off the couch. He couldnt move. We had went to the doctors and had multiple tests done. Then he started with pains in his chest also. Several trips to the ER, blood tests showing 25000 white cell count, 114 Sed rate, some other out of whack test results and 104 temp, but no one could figure out his problem. He seriously though that he was dying.He was referred to an infectious disease doctor that ran a nuclear medicine test on him. After that came back inconclusive he was immedately referred to a reumatologist in Petosky. After 20 minutes in there, he was diagnosed with Still's. Finally something could be done.Several months later....6000 mg of aspirin a day, two prilosecs and he is just barely under control. He has bad days. A lot. Most days he works and comes home and can't do anything else. When he was on 30 mg of Prednisone for a month or two he was much better. He is given nothing for pain management. The doctor feels that much aspirin a day should manage it for him. wrong. He has trouble sleeping at night and is exhausted all day long. I think the worst part for him is that he can no longer play with our 7 year old daughter as much as he used to. Well. That's our story. _________________________________________________________________ Give to a good cause with every e-mail. Join the i’m Initiative from Microsoft. http://im.live.com/Messenger/IM/Join/Default.aspx?souce=EML_WL_ GoodCause Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 My dh bares with it day after day. He has spent years arguing against medications, even over the counter ones. If you have the sniffles just deal with it and it will go away. He struggles now with have to take daily meds and will suffer through pain instead of ask for maintenance. You know, if you get angry enough, you can fight through anything type of attitude. Needless to say, we have some rough days. We want to know what everyone is doing for treatment, how it's working etc. The aspirin level does not go high enough, even at 6000 mg. He's been treated since September with the aspirin therapy. Afraid to try the MTX. Fear of side effects and also what it would do for his being able to have more children. This all happened after we decided to have my tubes reversed and to try for another child. All your responses have been wonderful and very helpful. Thank you all very much. Peg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Welcome Peggy and to your husband also. As others have given you advise I will just say welcome and that my nickname is . We also have free Still's brochures available for doctors, family and friends and if you should want some you may write to oldgoat378@... when he gets home and give him your mailing address in the next couple of weeks and he will send you some for free. We also have a Thursday night chat for those wishing to come and the link and times will be posting with the daily posts. Again we are happy to get to know you. ----- Original Message ----- From: Peggy Rauch Hi. My name is Peggy and my husband was diagnosed with SD in September of 07. Recent Activity a.. 7New Members Visit Your Group Meditation and Lovingkindness A Yahoo! Group to share and learn. Yahoo! Health Heartburn or Worse What symptoms are most serious? How-To Zone on Yahoo! Groups Discuss home and garden projects. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Welcome Peggy and to your husband also. As others have given you advise I will just say welcome and that my nickname is . We also have free Still's brochures available for doctors, family and friends and if you should want some you may write to oldgoat378@... when he gets home and give him your mailing address in the next couple of weeks and he will send you some for free. We also have a Thursday night chat for those wishing to come and the link and times will be posting with the daily posts. Again we are happy to get to know you. ----- Original Message ----- From: Peggy Rauch Hi. My name is Peggy and my husband was diagnosed with SD in September of 07. Recent Activity a.. 7New Members Visit Your Group Meditation and Lovingkindness A Yahoo! Group to share and learn. Yahoo! Health Heartburn or Worse What symptoms are most serious? How-To Zone on Yahoo! Groups Discuss home and garden projects. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Welcome Peggy and to your husband also. As others have given you advise I will just say welcome and that my nickname is . We also have free Still's brochures available for doctors, family and friends and if you should want some you may write to oldgoat378@... when he gets home and give him your mailing address in the next couple of weeks and he will send you some for free. We also have a Thursday night chat for those wishing to come and the link and times will be posting with the daily posts. Again we are happy to get to know you. ----- Original Message ----- From: Peggy Rauch Hi. My name is Peggy and my husband was diagnosed with SD in September of 07. Recent Activity a.. 7New Members Visit Your Group Meditation and Lovingkindness A Yahoo! Group to share and learn. Yahoo! Health Heartburn or Worse What symptoms are most serious? How-To Zone on Yahoo! Groups Discuss home and garden projects. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2008 Report Share Posted November 25, 2008 Hello Liegey Family, I hear you completely. I read an article of three years ago and gave it to our pediatrician at the time. He completely dismissed me and short of called me hysterical and nuts. When I think today of all the antibiotics my daughter (now 6 years old) has received, all the motrins, all the days missed, all the suffering, I just want to ring his neck for being so arrogant. We confirmed the diagnosis just a few days ago. Good luck to you all. Orit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2009 Report Share Posted June 24, 2009 Bug is just turned 6 and has had fevers since she was about 2 months old. We spent time after time at the doctors. They just thought I was being over protective. And always heard it is a virus she will be fine. After years of going through this I finally found a doctor who was like this isn't right. And we were sent to Vandi Childrens Hospital. There they decided she had . We decided a year and half later to have a T & A. We were so hoping it would work. The doctor gave us high hopes. She recovers like a champ. We thought it was over until 4 months later she got a fever. The highest one we have ever had. 105.7. It lasted for almost 2 weeks. We ended up taking her to the hospital and they did test after test to decide there was nothing wrong with her. We went a little over a month with no fever now she has one like every 2 weeks for a few days. Quote Link to comment Share on other sites More sharing options...
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