Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Hi , Sorry about your son. It's so good he's got you as a family, being so concern & supportive! It's got to be one of a parents hardest things to endure to know their kid is ill. Hope he gets the help he needs to continue to funtions With the least amount of discomfort & pain. Welcome to the group, it's an amaziing tool. Vivi **************One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000025) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Hi , Sorry about your son. It's so good he's got you as a family, being so concern & supportive! It's got to be one of a parents hardest things to endure to know their kid is ill. Hope he gets the help he needs to continue to funtions With the least amount of discomfort & pain. Welcome to the group, it's an amaziing tool. Vivi **************One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000025) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Hi , Sorry about your son. It's so good he's got you as a family, being so concern & supportive! It's got to be one of a parents hardest things to endure to know their kid is ill. Hope he gets the help he needs to continue to funtions With the least amount of discomfort & pain. Welcome to the group, it's an amaziing tool. Vivi **************One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000025) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Hi , I am new to the group, but have had this disease attack my organs and eventually joints. I am so sorry to here about your son, I know that with all the joint problems he has to be in pain more often than not. I was just recently on the combo of MTX, Plaquenil, Enbrel, and steroids and it had been working fairly well until the Enbrel caused lymph nodes to swell out of control and biopsies revealed reactive B-cell lymphoma, due to Enbrel. Enough of that, I have a doctor consult from the Mayo clinic and he wants me to start Kineret, Plaquenil, MTX and of course steroids. I have heard many good things about Kineret with alot of postive results. Might be something to look into, hopefully my insurance will approve it by Friday and I can get started. Heard some good things about Rituxan also. Hope this gives you a few ideas. Stay strong for your son, ________________________________ To: Stillsdisease Sent: Thursday, December 18, 2008 8:11:27 AM Subject: New/Old Member - Andy Hello Group My name is Puente and my son Andy has Still's disease. I was a member of the group a few years ago and some of the old timers may remember me. I have rejoined in order to learn about new medications and treatments that people have tried; what worked and what didn't. First, for the newer people in the group, as well as updating the older members (Cat - sorry about not staying in touch, too much happening with Andy), let me give you Andy's background. He was diagnosed 14 years ago when he was 25. It was the usual story; admitted to the hospital with spiking fevers, he was examined by almost every specialist there is and given every test in the book. On the sixth day, a rheumatologist arrived, looked at the chart, asked two questions, and diagnosed him with Still's. One of the questions was did you have JRA as a child? The answer was yes when he was eight years old. He was treated with six months of aspirin therapy (30 tabs of baby aspirin per day) and he went into total remission until that summer some 17 years later when AOSD struck. Despite all of the drugs he has been on over the years, his disease continues unabated and is still ravaging his body. Within 18 months of the onset of the disease he had his first hip replacement, followed a year later by the second one. Then in year 4 he had his first knee replacement and then his second one sometime later. He had a C2-C4 vertebrae fusion, a procedure that requires the head to be immobilized with a metal ring screwed into the skull and sleeping upright in a chair for 3 months. Both ankles and feet are fused with plates and pins. Bones in his hands have fused spontaneously and recently he had jaw surgery to correct a problem in one of the joints. His shoulders are extremely painful but he wants to put off those joint replacements as long as he can. He has been on Plaquenil, Methotrexate, Arava, Enbrel, Celebrex and now Orencia. His pain meds have included over the years: Tramadol (Ultram), Oxycodone, and a few others. Prednisone has been his mainstay; he is currently on 15 mg a day, but at times up to 80 mg per day. He also takes 200 mg of Celebrex 2x daily, Orencia - one infusion per month and Oxycodone for pain as needed. He was on Tramadol, but became addicted to it and had to go through full-blown withdrawal (sweats, chills, cramps, etc.) to get off of it. For those of you who are new members and have recently been diagnosed, I do not wish to frighten you with all of these details. Andy's case is very extreme and it is rare that Stills patients have this many problems. So, it doesn't mean that your disease will progress in this fashion. I list his background and his drug regimens here so that people whose joints are more affected than others can help me and Andy with some possible solutions. Despite his problems he continues to work full time as a private school teacher, has a loving wife, a 2 year old son, and one (a girl) on the way. However, his rheumatologist is concerned (and so am I) about the disease and its progression. Orencia is not having the desired effect and he is searching for alternatives. That's where all of you can help. I would like to hear in some detail what has helped you. I know all of the drugs that are on the market today and a few that are in Phase III testing. What I am looking for is what has worked for you. The more specific you can be the better I will be able to assist Andy and his doctor in looking at what works in Stills patients and what doesn't. I know that all people are different and what works for one won't necessarily work for another. Even though Andy has been on a number of the more powerful drugs that haven't worked, maybe some of you have tried various combinations that he has not. I know that his doctor is struggling to find a solution. Most rheumatologist don't have that many Still's patients and they are just as eager to hear about possible combinations that have worked for other people. Let's face it, there is not much research going on about Stills and doctors are left to their own devices to go through a process of trial and error to find out how the person responds to each drug or combination. That is the nature of the beast today. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 , I have recently started taking the Enbrel shots and worried about the side effect of the Lymphoma, is this very rare to happen? Has anyone had a lot of success with Enbrel? Subject: Re: New/Old Member - Andy To: Stillsdisease Date: Thursday, December 18, 2008, 8:23 AM Hi , I am new to the group, but have had this disease attack my organs and eventually joints. I am so sorry to here about your son, I know that with all the joint problems he has to be in pain more often than not. I was just recently on the combo of MTX, Plaquenil, Enbrel, and steroids and it had been working fairly well until the Enbrel caused lymph nodes to swell out of control and biopsies revealed reactive B-cell lymphoma, due to Enbrel. Enough of that, I have a doctor consult from the Mayo clinic and he wants me to start Kineret, Plaquenil, MTX and of course steroids. I have heard many good things about Kineret with alot of postive results. Might be something to look into, hopefully my insurance will approve it by Friday and I can get started. Heard some good things about Rituxan also. Hope this gives you a few ideas. Stay strong for your son, ____________ _________ _________ __ From: Puente <paulpuentegmail (DOT) com> To: Stillsdisease@ yahoogroups. com Sent: Thursday, December 18, 2008 8:11:27 AM Subject: New/Old Member - Andy Hello Group My name is Puente and my son Andy has Still's disease. I was a member of the group a few years ago and some of the old timers may remember me. I have rejoined in order to learn about new medications and treatments that people have tried; what worked and what didn't. First, for the newer people in the group, as well as updating the older members (Cat - sorry about not staying in touch, too much happening with Andy), let me give you Andy's background. He was diagnosed 14 years ago when he was 25. It was the usual story; admitted to the hospital with spiking fevers, he was examined by almost every specialist there is and given every test in the book. On the sixth day, a rheumatologist arrived, looked at the chart, asked two questions, and diagnosed him with Still's. One of the questions was did you have JRA as a child? The answer was yes when he was eight years old. He was treated with six months of aspirin therapy (30 tabs of baby aspirin per day) and he went into total remission until that summer some 17 years later when AOSD struck. Despite all of the drugs he has been on over the years, his disease continues unabated and is still ravaging his body. Within 18 months of the onset of the disease he had his first hip replacement, followed a year later by the second one. Then in year 4 he had his first knee replacement and then his second one sometime later. He had a C2-C4 vertebrae fusion, a procedure that requires the head to be immobilized with a metal ring screwed into the skull and sleeping upright in a chair for 3 months. Both ankles and feet are fused with plates and pins. Bones in his hands have fused spontaneously and recently he had jaw surgery to correct a problem in one of the joints. His shoulders are extremely painful but he wants to put off those joint replacements as long as he can. He has been on Plaquenil, Methotrexate, Arava, Enbrel, Celebrex and now Orencia. His pain meds have included over the years: Tramadol (Ultram), Oxycodone, and a few others. Prednisone has been his mainstay; he is currently on 15 mg a day, but at times up to 80 mg per day. He also takes 200 mg of Celebrex 2x daily, Orencia - one infusion per month and Oxycodone for pain as needed. He was on Tramadol, but became addicted to it and had to go through full-blown withdrawal (sweats, chills, cramps, etc.) to get off of it. For those of you who are new members and have recently been diagnosed, I do not wish to frighten you with all of these details. Andy's case is very extreme and it is rare that Stills patients have this many problems. So, it doesn't mean that your disease will progress in this fashion. I list his background and his drug regimens here so that people whose joints are more affected than others can help me and Andy with some possible solutions. Despite his problems he continues to work full time as a private school teacher, has a loving wife, a 2 year old son, and one (a girl) on the way. However, his rheumatologist is concerned (and so am I) about the disease and its progression. Orencia is not having the desired effect and he is searching for alternatives. That's where all of you can help. I would like to hear in some detail what has helped you. I know all of the drugs that are on the market today and a few that are in Phase III testing. What I am looking for is what has worked for you. The more specific you can be the better I will be able to assist Andy and his doctor in looking at what works in Stills patients and what doesn't. I know that all people are different and what works for one won't necessarily work for another. Even though Andy has been on a number of the more powerful drugs that haven't worked, maybe some of you have tried various combinations that he has not. I know that his doctor is struggling to find a solution. Most rheumatologist don't have that many Still's patients and they are just as eager to hear about possible combinations that have worked for other people. Let's face it, there is not much research going on about Stills and doctors are left to their own devices to go through a process of trial and error to find out how the person responds to each drug or combination. That is the nature of the beast today. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 , I was diagnosed in January 2001 at the age of 21. After the first 6 months or so, I have primarily had joint involvement and rashes, but the fevers are mostly gone. I was on Methotrexate (20mg), Prednisone (15mg) and I've tried Enbrel, Remicade and Kineret. The Enbrel and the Remicade helped some, but not enough to ever taper off the Prednisone. However, the Kineret seemed to help a lot more. While on the Kineret I was able to taper down to just 1 mg Prednisone and would have gotten off completely if I hadn't decided to go off all other meds to get pregnant. Before stopping the Kineret and Methotrexate my doctor said that my blood work (best I'd had since diagnosis) joint swelling (or lack thereof) and how good I felt meant that I was in remission (although drug induced). So for me, Kineret, Methotrexate and Prednisone were the magic ingredients. We'll see if they still are after I have another baby. Hope this helps. Carly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Don't let my case scare you, Enbrel has helped more people than it has hurt. Your doctors will keep a close eye on you and your blood work, just make sure if you notice anything different to let them know. Mine was caught early enough that it is limited to a few lymph nodes in my neck and no where else. My docs have said there is a 98% remission rate. I know you don't know my whole history with this battle, but the Still's attacked my organs first which is very rare. The lymphoma only happens in about 2% of all Enbrel users, it is a great drug and it was helping me, thats why I got so frustrated when I had to stop. Give it a chance, I think its worth it. If you have any more questions let me know, I will be happy to answer, and if you need any support I can provide that too! Hugs, ________________________________ To: Stillsdisease Sent: Thursday, December 18, 2008 8:45:22 AM Subject: Re: New/Old Member - Andy , I have recently started taking the Enbrel shots and worried about the side effect of the Lymphoma, is this very rare to happen? Has anyone had a lot of success with Enbrel? From: <jmreed0410yahoo (DOT) com> Subject: Re: New/Old Member - Andy To: Stillsdisease@ yahoogroups. com Date: Thursday, December 18, 2008, 8:23 AM Hi , I am new to the group, but have had this disease attack my organs and eventually joints. I am so sorry to here about your son, I know that with all the joint problems he has to be in pain more often than not. I was just recently on the combo of MTX, Plaquenil, Enbrel, and steroids and it had been working fairly well until the Enbrel caused lymph nodes to swell out of control and biopsies revealed reactive B-cell lymphoma, due to Enbrel. Enough of that, I have a doctor consult from the Mayo clinic and he wants me to start Kineret, Plaquenil, MTX and of course steroids. I have heard many good things about Kineret with alot of postive results. Might be something to look into, hopefully my insurance will approve it by Friday and I can get started. Heard some good things about Rituxan also. Hope this gives you a few ideas. Stay strong for your son, ____________ _________ _________ __ From: Puente <paulpuente@ gmail. com> To: Stillsdisease@ yahoogroups. com Sent: Thursday, December 18, 2008 8:11:27 AM Subject: New/Old Member - Andy Hello Group My name is Puente and my son Andy has Still's disease. I was a member of the group a few years ago and some of the old timers may remember me. I have rejoined in order to learn about new medications and treatments that people have tried; what worked and what didn't. First, for the newer people in the group, as well as updating the older members (Cat - sorry about not staying in touch, too much happening with Andy), let me give you Andy's background. He was diagnosed 14 years ago when he was 25. It was the usual story; admitted to the hospital with spiking fevers, he was examined by almost every specialist there is and given every test in the book. On the sixth day, a rheumatologist arrived, looked at the chart, asked two questions, and diagnosed him with Still's. One of the questions was did you have JRA as a child? The answer was yes when he was eight years old. He was treated with six months of aspirin therapy (30 tabs of baby aspirin per day) and he went into total remission until that summer some 17 years later when AOSD struck. Despite all of the drugs he has been on over the years, his disease continues unabated and is still ravaging his body. Within 18 months of the onset of the disease he had his first hip replacement, followed a year later by the second one. Then in year 4 he had his first knee replacement and then his second one sometime later. He had a C2-C4 vertebrae fusion, a procedure that requires the head to be immobilized with a metal ring screwed into the skull and sleeping upright in a chair for 3 months. Both ankles and feet are fused with plates and pins. Bones in his hands have fused spontaneously and recently he had jaw surgery to correct a problem in one of the joints. His shoulders are extremely painful but he wants to put off those joint replacements as long as he can. He has been on Plaquenil, Methotrexate, Arava, Enbrel, Celebrex and now Orencia. His pain meds have included over the years: Tramadol (Ultram), Oxycodone, and a few others. Prednisone has been his mainstay; he is currently on 15 mg a day, but at times up to 80 mg per day. He also takes 200 mg of Celebrex 2x daily, Orencia - one infusion per month and Oxycodone for pain as needed. He was on Tramadol, but became addicted to it and had to go through full-blown withdrawal (sweats, chills, cramps, etc.) to get off of it. For those of you who are new members and have recently been diagnosed, I do not wish to frighten you with all of these details. Andy's case is very extreme and it is rare that Stills patients have this many problems. So, it doesn't mean that your disease will progress in this fashion. I list his background and his drug regimens here so that people whose joints are more affected than others can help me and Andy with some possible solutions. Despite his problems he continues to work full time as a private school teacher, has a loving wife, a 2 year old son, and one (a girl) on the way. However, his rheumatologist is concerned (and so am I) about the disease and its progression. Orencia is not having the desired effect and he is searching for alternatives. That's where all of you can help. I would like to hear in some detail what has helped you. I know all of the drugs that are on the market today and a few that are in Phase III testing. What I am looking for is what has worked for you. The more specific you can be the better I will be able to assist Andy and his doctor in looking at what works in Stills patients and what doesn't. I know that all people are different and what works for one won't necessarily work for another. Even though Andy has been on a number of the more powerful drugs that haven't worked, maybe some of you have tried various combinations that he has not. I know that his doctor is struggling to find a solution. Most rheumatologist don't have that many Still's patients and they are just as eager to hear about possible combinations that have worked for other people. Let's face it, there is not much research going on about Stills and doctors are left to their own devices to go through a process of trial and error to find out how the person responds to each drug or combination. That is the nature of the beast today. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Carly, How long have you been on the Kineret? I hope that this will be my magic too. ________________________________ To: Stillsdisease Sent: Thursday, December 18, 2008 9:10:04 AM Subject: Re: New/Old Member - Andy , I was diagnosed in January 2001 at the age of 21. After the first 6 months or so, I have primarily had joint involvement and rashes, but the fevers are mostly gone. I was on Methotrexate (20mg), Prednisone (15mg) and I've tried Enbrel, Remicade and Kineret. The Enbrel and the Remicade helped some, but not enough to ever taper off the Prednisone. However, the Kineret seemed to help a lot more. While on the Kineret I was able to taper down to just 1 mg Prednisone and would have gotten off completely if I hadn't decided to go off all other meds to get pregnant. Before stopping the Kineret and Methotrexate my doctor said that my blood work (best I'd had since diagnosis) joint swelling (or lack thereof) and how good I felt meant that I was in remission (although drug induced). So for me, Kineret, Methotrexate and Prednisone were the magic ingredients. We'll see if they still are after I have another baby. Hope this helps. Carly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Hi , hello everyone, I have not posted anything for a while; the good news is that this is because I have improved enormously since this summer (when I was diagnosed and joined the group). I have been on Kineret since early July, and have kept improving since I began it. I was able to get off prednisone in October, and am now even reducing the amount of ibuprofen I take daily (my creatinine levels were up some at the last round of tests, so the doc asked me to reduce it if I can). I have been able to get back to my " job " (I'm a graduate student writing a dissertation right now) this semester, and I was able to complete the semester normally, without having to cut back on what I am doing - except for the days I missed things because I was waiting for Fedex or UPS to deliver Kineret, and they were late showing up... To summarize: I am now taking Kineret daily, and 200mg of ibuprofen 3x/ day. I have some slight soreness in muscles from time to time, but nothing serious. My labs are all normal, so I suppose I am in (drug- induced) remission. I also wanted to say that I have been reading the posts pretty much every day, even though I have not written back in a while. I want to thank everyone for their messages - even though I am feeling very good, there is still uncertainty about the future, and it is really wonderful to hear from others who are dealing with this and know you are out there. I wish you all pain-free days and lots of happiness, especially during the holidays. > Hello Group > > My name is Puente and my son Andy has Still's disease. I was a > member > of the group a few years ago and some of the old timers may remember > me. I > have rejoined in order to learn about new medications and treatments > that > people have tried; what worked and what didn't. > > First, for the newer people in the group, as well as updating the > older > members (Cat - sorry about not staying in touch, too much happening > with > Andy), let me give you Andy's background. He was diagnosed 14 years > ago when > he was 25. It was the usual story; admitted to the hospital with > spiking > fevers, he was examined by almost every specialist there is and > given every > test in the book. On the sixth day, a rheumatologist arrived, looked > at the > chart, asked two questions, and diagnosed him with Still's. One of the > questions was did you have JRA as a child? The answer was yes when > he was > eight years old. He was treated with six months of aspirin therapy > (30 tabs > of baby aspirin per day) and he went into total remission until that > summer > some 17 years later when AOSD struck. Despite all of the drugs he > has been > on over the years, his disease continues unabated and is still > ravaging his > body. > > Within 18 months of the onset of the disease he had his first hip > replacement, followed a year later by the second one. Then in year 4 > he had > his first knee replacement and then his second one sometime later. > He had a > C2-C4 vertebrae fusion, a procedure that requires the head to be > immobilized > with a metal ring screwed into the skull and sleeping upright in a > chair for > 3 months. Both ankles and feet are fused with plates and pins. Bones > in his > hands have fused spontaneously and recently he had jaw surgery to > correct a > problem in one of the joints. His shoulders are extremely painful > but he > wants to put off those joint replacements as long as he can. > > He has been on Plaquenil, Methotrexate, Arava, Enbrel, Celebrex and > now > Orencia. His pain meds have included over the years: Tramadol > (Ultram), > Oxycodone, and a few others. Prednisone has been his mainstay; he is > currently on 15 mg a day, but at times up to 80 mg per day. He also > takes > 200 mg of Celebrex 2x daily, Orencia - one infusion per month and > Oxycodone > for pain as needed. He was on Tramadol, but became addicted to it > and had to > go through full-blown withdrawal (sweats, chills, cramps, etc.) to > get off > of it. > > For those of you who are new members and have recently been > diagnosed, I do > not wish to frighten you with all of these details. Andy's case is > very > extreme and it is rare that Stills patients have this many problems. > So, it > doesn't mean that your disease will progress in this fashion. I list > his > background and his drug regimens here so that people whose joints > are more > affected than others can help me and Andy with some possible > solutions. > > Despite his problems he continues to work full time as a private > school > teacher, has a loving wife, a 2 year old son, and one (a girl) on > the way. > However, his rheumatologist is concerned (and so am I) about the > disease and > its progression. Orencia is not having the desired effect and he is > searching for alternatives. > > That's where all of you can help. I would like to hear in some > detail what > has helped you. I know all of the drugs that are on the market today > and a > few that are in Phase III testing. What I am looking for is what has > worked > for you. The more specific you can be the better I will be able to > assist > Andy and his doctor in looking at what works in Stills patients and > what > doesn't. I know that all people are different and what works for one > won't > necessarily work for another. Even though Andy has been on a number > of the > more powerful drugs that haven't worked, maybe some of you have tried > various combinations that he has not. I know that his doctor is > struggling > to find a solution. Most rheumatologist don't have that many Still's > patients and they are just as eager to hear about possible > combinations that > have worked for other people. Let's face it, there is not much > research > going on about Stills and doctors are left to their own devices to go > through a process of trial and error to find out how the person > responds to > each drug or combination. That is the nature of the beast today. > > Thanks, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Hi , I am new to the group, been here for a couple of weeks. Already found great support and new friends. Do you remember how long the Kineret took for you to start seeing results? I am ready to get it started, many people have said it was what had finally worked for them. Stay well, good luck on your dissertation, I remember those days, ________________________________ To: Stillsdisease Sent: Thursday, December 18, 2008 9:32:59 AM Subject: Re: New/Old Member - Andy Hi , hello everyone, I have not posted anything for a while; the good news is that this is because I have improved enormously since this summer (when I was diagnosed and joined the group). I have been on Kineret since early July, and have kept improving since I began it. I was able to get off prednisone in October, and am now even reducing the amount of ibuprofen I take daily (my creatinine levels were up some at the last round of tests, so the doc asked me to reduce it if I can). I have been able to get back to my " job " (I'm a graduate student writing a dissertation right now) this semester, and I was able to complete the semester normally, without having to cut back on what I am doing - except for the days I missed things because I was waiting for Fedex or UPS to deliver Kineret, and they were late showing up... To summarize: I am now taking Kineret daily, and 200mg of ibuprofen 3x/ day. I have some slight soreness in muscles from time to time, but nothing serious. My labs are all normal, so I suppose I am in (drug- induced) remission. I also wanted to say that I have been reading the posts pretty much every day, even though I have not written back in a while. I want to thank everyone for their messages - even though I am feeling very good, there is still uncertainty about the future, and it is really wonderful to hear from others who are dealing with this and know you are out there.. I wish you all pain-free days and lots of happiness, especially during the holidays. > Hello Group > > My name is Puente and my son Andy has Still's disease. I was a > member > of the group a few years ago and some of the old timers may remember > me. I > have rejoined in order to learn about new medications and treatments > that > people have tried; what worked and what didn't. > > First, for the newer people in the group, as well as updating the > older > members (Cat - sorry about not staying in touch, too much happening > with > Andy), let me give you Andy's background. He was diagnosed 14 years > ago when > he was 25. It was the usual story; admitted to the hospital with > spiking > fevers, he was examined by almost every specialist there is and > given every > test in the book. On the sixth day, a rheumatologist arrived, looked > at the > chart, asked two questions, and diagnosed him with Still's. One of the > questions was did you have JRA as a child? The answer was yes when > he was > eight years old. He was treated with six months of aspirin therapy > (30 tabs > of baby aspirin per day) and he went into total remission until that > summer > some 17 years later when AOSD struck.. Despite all of the drugs he > has been > on over the years, his disease continues unabated and is still > ravaging his > body. > > Within 18 months of the onset of the disease he had his first hip > replacement, followed a year later by the second one. Then in year 4 > he had > his first knee replacement and then his second one sometime later. > He had a > C2-C4 vertebrae fusion, a procedure that requires the head to be > immobilized > with a metal ring screwed into the skull and sleeping upright in a > chair for > 3 months. Both ankles and feet are fused with plates and pins. Bones > in his > hands have fused spontaneously and recently he had jaw surgery to > correct a > problem in one of the joints. His shoulders are extremely painful > but he > wants to put off those joint replacements as long as he can. > > He has been on Plaquenil, Methotrexate, Arava, Enbrel, Celebrex and > now > Orencia. His pain meds have included over the years: Tramadol > (Ultram), > Oxycodone, and a few others. Prednisone has been his mainstay; he is > currently on 15 mg a day, but at times up to 80 mg per day. He also > takes > 200 mg of Celebrex 2x daily, Orencia - one infusion per month and > Oxycodone > for pain as needed. He was on Tramadol, but became addicted to it > and had to > go through full-blown withdrawal (sweats, chills, cramps, etc.) to > get off > of it. > > For those of you who are new members and have recently been > diagnosed, I do > not wish to frighten you with all of these details. Andy's case is > very > extreme and it is rare that Stills patients have this many problems. > So, it > doesn't mean that your disease will progress in this fashion. I list > his > background and his drug regimens here so that people whose joints > are more > affected than others can help me and Andy with some possible > solutions. > > Despite his problems he continues to work full time as a private > school > teacher, has a loving wife, a 2 year old son, and one (a girl) on > the way. > However, his rheumatologist is concerned (and so am I) about the > disease and > its progression. Orencia is not having the desired effect and he is > searching for alternatives. > > That's where all of you can help. I would like to hear in some > detail what > has helped you. I know all of the drugs that are on the market today > and a > few that are in Phase III testing. What I am looking for is what has > worked > for you. The more specific you can be the better I will be able to > assist > Andy and his doctor in looking at what works in Stills patients and > what > doesn't. I know that all people are different and what works for one > won't > necessarily work for another. Even though Andy has been on a number > of the > more powerful drugs that haven't worked, maybe some of you have tried > various combinations that he has not. I know that his doctor is > struggling > to find a solution. Most rheumatologist don't have that many Still's > patients and they are just as eager to hear about possible > combinations that > have worked for other people. Let's face it, there is not much > research > going on about Stills and doctors are left to their own devices to go > through a process of trial and error to find out how the person > responds to > each drug or combination. That is the nature of the beast today. > > Thanks, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Hi , I can still hardly believe it (there must be a psychological component to this), but I felt different within a few minutes of taking the first injection. Within an hour I felt the " brain fog " lifting, and I remembered what it was like to feel normal. Of course not every day is that good, but in general I am so close to feeling normal again that I have to look carefully to be sure if I am noticing a symptom. Good luck - I hope it works as well for you. > Hi , > > I am new to the group, been here for a couple of weeks. Already > found great support and new friends. > > Do you remember how long the Kineret took for you to start seeing > results? > > I am ready to get it started, many people have said it was what had > finally worked for them. > > Stay well, good luck on your dissertation, I remember those days, > > > ________________________________ > > To: Stillsdisease > Sent: Thursday, December 18, 2008 9:32:59 AM > Subject: Re: New/Old Member - Andy > > Hi , hello everyone, > > I have not posted anything for a while; the good news is that this is > because I have improved enormously since this summer (when I was > diagnosed and joined the group). I have been on Kineret since early > July, and have kept improving since I began it. I was able to get off > prednisone in October, and am now even reducing the amount of > ibuprofen I take daily (my creatinine levels were up some at the last > round of tests, so the doc asked me to reduce it if I can). > > I have been able to get back to my " job " (I'm a graduate student > writing a dissertation right now) this semester, and I was able to > complete the semester normally, without having to cut back on what I > am doing - except for the days I missed things because I was waiting > for Fedex or UPS to deliver Kineret, and they were late showing up... > > To summarize: I am now taking Kineret daily, and 200mg of ibuprofen > 3x/ > day. I have some slight soreness in muscles from time to time, but > nothing serious. My labs are all normal, so I suppose I am in (drug- > induced) remission. > > I also wanted to say that I have been reading the posts pretty much > every day, even though I have not written back in a while. I want to > thank everyone for their messages - even though I am feeling very > good, there is still uncertainty about the future, and it is really > wonderful to hear from others who are dealing with this and know you > are out there.. I wish you all pain-free days and lots of happiness, > especially during the holidays. > > > > > > Hello Group > > > > My name is Puente and my son Andy has Still's disease. I was a > > member > > of the group a few years ago and some of the old timers may remember > > me. I > > have rejoined in order to learn about new medications and treatments > > that > > people have tried; what worked and what didn't. > > > > First, for the newer people in the group, as well as updating the > > older > > members (Cat - sorry about not staying in touch, too much happening > > with > > Andy), let me give you Andy's background. He was diagnosed 14 years > > ago when > > he was 25. It was the usual story; admitted to the hospital with > > spiking > > fevers, he was examined by almost every specialist there is and > > given every > > test in the book. On the sixth day, a rheumatologist arrived, looked > > at the > > chart, asked two questions, and diagnosed him with Still's. One of > the > > questions was did you have JRA as a child? The answer was yes when > > he was > > eight years old. He was treated with six months of aspirin therapy > > (30 tabs > > of baby aspirin per day) and he went into total remission until that > > summer > > some 17 years later when AOSD struck.. Despite all of the drugs he > > has been > > on over the years, his disease continues unabated and is still > > ravaging his > > body. > > > > Within 18 months of the onset of the disease he had his first hip > > replacement, followed a year later by the second one. Then in year 4 > > he had > > his first knee replacement and then his second one sometime later. > > He had a > > C2-C4 vertebrae fusion, a procedure that requires the head to be > > immobilized > > with a metal ring screwed into the skull and sleeping upright in a > > chair for > > 3 months. Both ankles and feet are fused with plates and pins. Bones > > in his > > hands have fused spontaneously and recently he had jaw surgery to > > correct a > > problem in one of the joints. His shoulders are extremely painful > > but he > > wants to put off those joint replacements as long as he can. > > > > He has been on Plaquenil, Methotrexate, Arava, Enbrel, Celebrex and > > now > > Orencia. His pain meds have included over the years: Tramadol > > (Ultram), > > Oxycodone, and a few others. Prednisone has been his mainstay; he is > > currently on 15 mg a day, but at times up to 80 mg per day. He also > > takes > > 200 mg of Celebrex 2x daily, Orencia - one infusion per month and > > Oxycodone > > for pain as needed. He was on Tramadol, but became addicted to it > > and had to > > go through full-blown withdrawal (sweats, chills, cramps, etc.) to > > get off > > of it. > > > > For those of you who are new members and have recently been > > diagnosed, I do > > not wish to frighten you with all of these details. Andy's case is > > very > > extreme and it is rare that Stills patients have this many problems. > > So, it > > doesn't mean that your disease will progress in this fashion. I list > > his > > background and his drug regimens here so that people whose joints > > are more > > affected than others can help me and Andy with some possible > > solutions. > > > > Despite his problems he continues to work full time as a private > > school > > teacher, has a loving wife, a 2 year old son, and one (a girl) on > > the way. > > However, his rheumatologist is concerned (and so am I) about the > > disease and > > its progression. Orencia is not having the desired effect and he is > > searching for alternatives. > > > > That's where all of you can help. I would like to hear in some > > detail what > > has helped you. I know all of the drugs that are on the market today > > and a > > few that are in Phase III testing. What I am looking for is what has > > worked > > for you. The more specific you can be the better I will be able to > > assist > > Andy and his doctor in looking at what works in Stills patients and > > what > > doesn't. I know that all people are different and what works for one > > won't > > necessarily work for another. Even though Andy has been on a number > > of the > > more powerful drugs that haven't worked, maybe some of you have > tried > > various combinations that he has not. I know that his doctor is > > struggling > > to find a solution. Most rheumatologist don't have that many Still's > > patients and they are just as eager to hear about possible > > combinations that > > have worked for other people. Let's face it, there is not much > > research > > going on about Stills and doctors are left to their own devices to > go > > through a process of trial and error to find out how the person > > responds to > > each drug or combination. That is the nature of the beast today. > > > > Thanks, > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Hi , I can still hardly believe it (there must be a psychological component to this), but I felt different within a few minutes of taking the first injection. Within an hour I felt the " brain fog " lifting, and I remembered what it was like to feel normal. Of course not every day is that good, but in general I am so close to feeling normal again that I have to look carefully to be sure if I am noticing a symptom. Good luck - I hope it works as well for you. > Hi , > > I am new to the group, been here for a couple of weeks. Already > found great support and new friends. > > Do you remember how long the Kineret took for you to start seeing > results? > > I am ready to get it started, many people have said it was what had > finally worked for them. > > Stay well, good luck on your dissertation, I remember those days, > > > ________________________________ > > To: Stillsdisease > Sent: Thursday, December 18, 2008 9:32:59 AM > Subject: Re: New/Old Member - Andy > > Hi , hello everyone, > > I have not posted anything for a while; the good news is that this is > because I have improved enormously since this summer (when I was > diagnosed and joined the group). I have been on Kineret since early > July, and have kept improving since I began it. I was able to get off > prednisone in October, and am now even reducing the amount of > ibuprofen I take daily (my creatinine levels were up some at the last > round of tests, so the doc asked me to reduce it if I can). > > I have been able to get back to my " job " (I'm a graduate student > writing a dissertation right now) this semester, and I was able to > complete the semester normally, without having to cut back on what I > am doing - except for the days I missed things because I was waiting > for Fedex or UPS to deliver Kineret, and they were late showing up... > > To summarize: I am now taking Kineret daily, and 200mg of ibuprofen > 3x/ > day. I have some slight soreness in muscles from time to time, but > nothing serious. My labs are all normal, so I suppose I am in (drug- > induced) remission. > > I also wanted to say that I have been reading the posts pretty much > every day, even though I have not written back in a while. I want to > thank everyone for their messages - even though I am feeling very > good, there is still uncertainty about the future, and it is really > wonderful to hear from others who are dealing with this and know you > are out there.. I wish you all pain-free days and lots of happiness, > especially during the holidays. > > > > > > Hello Group > > > > My name is Puente and my son Andy has Still's disease. I was a > > member > > of the group a few years ago and some of the old timers may remember > > me. I > > have rejoined in order to learn about new medications and treatments > > that > > people have tried; what worked and what didn't. > > > > First, for the newer people in the group, as well as updating the > > older > > members (Cat - sorry about not staying in touch, too much happening > > with > > Andy), let me give you Andy's background. He was diagnosed 14 years > > ago when > > he was 25. It was the usual story; admitted to the hospital with > > spiking > > fevers, he was examined by almost every specialist there is and > > given every > > test in the book. On the sixth day, a rheumatologist arrived, looked > > at the > > chart, asked two questions, and diagnosed him with Still's. One of > the > > questions was did you have JRA as a child? The answer was yes when > > he was > > eight years old. He was treated with six months of aspirin therapy > > (30 tabs > > of baby aspirin per day) and he went into total remission until that > > summer > > some 17 years later when AOSD struck.. Despite all of the drugs he > > has been > > on over the years, his disease continues unabated and is still > > ravaging his > > body. > > > > Within 18 months of the onset of the disease he had his first hip > > replacement, followed a year later by the second one. Then in year 4 > > he had > > his first knee replacement and then his second one sometime later. > > He had a > > C2-C4 vertebrae fusion, a procedure that requires the head to be > > immobilized > > with a metal ring screwed into the skull and sleeping upright in a > > chair for > > 3 months. Both ankles and feet are fused with plates and pins. Bones > > in his > > hands have fused spontaneously and recently he had jaw surgery to > > correct a > > problem in one of the joints. His shoulders are extremely painful > > but he > > wants to put off those joint replacements as long as he can. > > > > He has been on Plaquenil, Methotrexate, Arava, Enbrel, Celebrex and > > now > > Orencia. His pain meds have included over the years: Tramadol > > (Ultram), > > Oxycodone, and a few others. Prednisone has been his mainstay; he is > > currently on 15 mg a day, but at times up to 80 mg per day. He also > > takes > > 200 mg of Celebrex 2x daily, Orencia - one infusion per month and > > Oxycodone > > for pain as needed. He was on Tramadol, but became addicted to it > > and had to > > go through full-blown withdrawal (sweats, chills, cramps, etc.) to > > get off > > of it. > > > > For those of you who are new members and have recently been > > diagnosed, I do > > not wish to frighten you with all of these details. Andy's case is > > very > > extreme and it is rare that Stills patients have this many problems. > > So, it > > doesn't mean that your disease will progress in this fashion. I list > > his > > background and his drug regimens here so that people whose joints > > are more > > affected than others can help me and Andy with some possible > > solutions. > > > > Despite his problems he continues to work full time as a private > > school > > teacher, has a loving wife, a 2 year old son, and one (a girl) on > > the way. > > However, his rheumatologist is concerned (and so am I) about the > > disease and > > its progression. Orencia is not having the desired effect and he is > > searching for alternatives. > > > > That's where all of you can help. I would like to hear in some > > detail what > > has helped you. I know all of the drugs that are on the market today > > and a > > few that are in Phase III testing. What I am looking for is what has > > worked > > for you. The more specific you can be the better I will be able to > > assist > > Andy and his doctor in looking at what works in Stills patients and > > what > > doesn't. I know that all people are different and what works for one > > won't > > necessarily work for another. Even though Andy has been on a number > > of the > > more powerful drugs that haven't worked, maybe some of you have > tried > > various combinations that he has not. I know that his doctor is > > struggling > > to find a solution. Most rheumatologist don't have that many Still's > > patients and they are just as eager to hear about possible > > combinations that > > have worked for other people. Let's face it, there is not much > > research > > going on about Stills and doctors are left to their own devices to > go > > through a process of trial and error to find out how the person > > responds to > > each drug or combination. That is the nature of the beast today. > > > > Thanks, > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Thanks for the info. I may have missed it but where you on anything else in combination with the Kineret besides steroids? ________________________________ To: Stillsdisease Sent: Thursday, December 18, 2008 9:56:28 AM Subject: Re: New/Old Member - Andy Hi , I can still hardly believe it (there must be a psychological component to this), but I felt different within a few minutes of taking the first injection. Within an hour I felt the " brain fog " lifting, and I remembered what it was like to feel normal. Of course not every day is that good, but in general I am so close to feeling normal again that I have to look carefully to be sure if I am noticing a symptom. Good luck - I hope it works as well for you. > Hi , > > I am new to the group, been here for a couple of weeks. Already > found great support and new friends. > > Do you remember how long the Kineret took for you to start seeing > results? > > I am ready to get it started, many people have said it was what had > finally worked for them. > > Stay well, good luck on your dissertation, I remember those days, > > > ____________ _________ _________ __ > From: D Prince <bprincerice (DOT) edu> > To: Stillsdisease@ yahoogroups. com > Sent: Thursday, December 18, 2008 9:32:59 AM > Subject: Re: New/Old Member - Andy > > Hi , hello everyone, > > I have not posted anything for a while; the good news is that this is > because I have improved enormously since this summer (when I was > diagnosed and joined the group). I have been on Kineret since early > July, and have kept improving since I began it. I was able to get off > prednisone in October, and am now even reducing the amount of > ibuprofen I take daily (my creatinine levels were up some at the last > round of tests, so the doc asked me to reduce it if I can). > > I have been able to get back to my " job " (I'm a graduate student > writing a dissertation right now) this semester, and I was able to > complete the semester normally, without having to cut back on what I > am doing - except for the days I missed things because I was waiting > for Fedex or UPS to deliver Kineret, and they were late showing up... > > To summarize: I am now taking Kineret daily, and 200mg of ibuprofen > 3x/ > day. I have some slight soreness in muscles from time to time, but > nothing serious. My labs are all normal, so I suppose I am in (drug- > induced) remission. > > I also wanted to say that I have been reading the posts pretty much > every day, even though I have not written back in a while. I want to > thank everyone for their messages - even though I am feeling very > good, there is still uncertainty about the future, and it is really > wonderful to hear from others who are dealing with this and know you > are out there.. I wish you all pain-free days and lots of happiness, > especially during the holidays. > > > > > > Hello Group > > > > My name is Puente and my son Andy has Still's disease. I was a > > member > > of the group a few years ago and some of the old timers may remember > > me. I > > have rejoined in order to learn about new medications and treatments > > that > > people have tried; what worked and what didn't. > > > > First, for the newer people in the group, as well as updating the > > older > > members (Cat - sorry about not staying in touch, too much happening > > with > > Andy), let me give you Andy's background. He was diagnosed 14 years > > ago when > > he was 25. It was the usual story; admitted to the hospital with > > spiking > > fevers, he was examined by almost every specialist there is and > > given every > > test in the book. On the sixth day, a rheumatologist arrived, looked > > at the > > chart, asked two questions, and diagnosed him with Still's. One of > the > > questions was did you have JRA as a child? The answer was yes when > > he was > > eight years old. He was treated with six months of aspirin therapy > > (30 tabs > > of baby aspirin per day) and he went into total remission until that > > summer > > some 17 years later when AOSD struck... Despite all of the drugs he > > has been > > on over the years, his disease continues unabated and is still > > ravaging his > > body. > > > > Within 18 months of the onset of the disease he had his first hip > > replacement, followed a year later by the second one. Then in year 4 > > he had > > his first knee replacement and then his second one sometime later. > > He had a > > C2-C4 vertebrae fusion, a procedure that requires the head to be > > immobilized > > with a metal ring screwed into the skull and sleeping upright in a > > chair for > > 3 months. Both ankles and feet are fused with plates and pins. Bones > > in his > > hands have fused spontaneously and recently he had jaw surgery to > > correct a > > problem in one of the joints. His shoulders are extremely painful > > but he > > wants to put off those joint replacements as long as he can. > > > > He has been on Plaquenil, Methotrexate, Arava, Enbrel, Celebrex and > > now > > Orencia. His pain meds have included over the years: Tramadol > > (Ultram), > > Oxycodone, and a few others. Prednisone has been his mainstay; he is > > currently on 15 mg a day, but at times up to 80 mg per day. He also > > takes > > 200 mg of Celebrex 2x daily, Orencia - one infusion per month and > > Oxycodone > > for pain as needed. He was on Tramadol, but became addicted to it > > and had to > > go through full-blown withdrawal (sweats, chills, cramps, etc.) to > > get off > > of it. > > > > For those of you who are new members and have recently been > > diagnosed, I do > > not wish to frighten you with all of these details. Andy's case is > > very > > extreme and it is rare that Stills patients have this many problems. > > So, it > > doesn't mean that your disease will progress in this fashion. I list > > his > > background and his drug regimens here so that people whose joints > > are more > > affected than others can help me and Andy with some possible > > solutions. > > > > Despite his problems he continues to work full time as a private > > school > > teacher, has a loving wife, a 2 year old son, and one (a girl) on > > the way. > > However, his rheumatologist is concerned (and so am I) about the > > disease and > > its progression. Orencia is not having the desired effect and he is > > searching for alternatives. > > > > That's where all of you can help. I would like to hear in some > > detail what > > has helped you. I know all of the drugs that are on the market today > > and a > > few that are in Phase III testing. What I am looking for is what has > > worked > > for you. The more specific you can be the better I will be able to > > assist > > Andy and his doctor in looking at what works in Stills patients and > > what > > doesn't. I know that all people are different and what works for one > > won't > > necessarily work for another. Even though Andy has been on a number > > of the > > more powerful drugs that haven't worked, maybe some of you have > tried > > various combinations that he has not.. I know that his doctor is > > struggling > > to find a solution. Most rheumatologist don't have that many Still's > > patients and they are just as eager to hear about possible > > combinations that > > have worked for other people. Let's face it, there is not much > > research > > going on about Stills and doctors are left to their own devices to > go > > through a process of trial and error to find out how the person > > responds to > > each drug or combination. That is the nature of the beast today. > > > > Thanks, > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Thanks for the info. I may have missed it but where you on anything else in combination with the Kineret besides steroids? ________________________________ To: Stillsdisease Sent: Thursday, December 18, 2008 9:56:28 AM Subject: Re: New/Old Member - Andy Hi , I can still hardly believe it (there must be a psychological component to this), but I felt different within a few minutes of taking the first injection. Within an hour I felt the " brain fog " lifting, and I remembered what it was like to feel normal. Of course not every day is that good, but in general I am so close to feeling normal again that I have to look carefully to be sure if I am noticing a symptom. Good luck - I hope it works as well for you. > Hi , > > I am new to the group, been here for a couple of weeks. Already > found great support and new friends. > > Do you remember how long the Kineret took for you to start seeing > results? > > I am ready to get it started, many people have said it was what had > finally worked for them. > > Stay well, good luck on your dissertation, I remember those days, > > > ____________ _________ _________ __ > From: D Prince <bprincerice (DOT) edu> > To: Stillsdisease@ yahoogroups. com > Sent: Thursday, December 18, 2008 9:32:59 AM > Subject: Re: New/Old Member - Andy > > Hi , hello everyone, > > I have not posted anything for a while; the good news is that this is > because I have improved enormously since this summer (when I was > diagnosed and joined the group). I have been on Kineret since early > July, and have kept improving since I began it. I was able to get off > prednisone in October, and am now even reducing the amount of > ibuprofen I take daily (my creatinine levels were up some at the last > round of tests, so the doc asked me to reduce it if I can). > > I have been able to get back to my " job " (I'm a graduate student > writing a dissertation right now) this semester, and I was able to > complete the semester normally, without having to cut back on what I > am doing - except for the days I missed things because I was waiting > for Fedex or UPS to deliver Kineret, and they were late showing up... > > To summarize: I am now taking Kineret daily, and 200mg of ibuprofen > 3x/ > day. I have some slight soreness in muscles from time to time, but > nothing serious. My labs are all normal, so I suppose I am in (drug- > induced) remission. > > I also wanted to say that I have been reading the posts pretty much > every day, even though I have not written back in a while. I want to > thank everyone for their messages - even though I am feeling very > good, there is still uncertainty about the future, and it is really > wonderful to hear from others who are dealing with this and know you > are out there.. I wish you all pain-free days and lots of happiness, > especially during the holidays. > > > > > > Hello Group > > > > My name is Puente and my son Andy has Still's disease. I was a > > member > > of the group a few years ago and some of the old timers may remember > > me. I > > have rejoined in order to learn about new medications and treatments > > that > > people have tried; what worked and what didn't. > > > > First, for the newer people in the group, as well as updating the > > older > > members (Cat - sorry about not staying in touch, too much happening > > with > > Andy), let me give you Andy's background. He was diagnosed 14 years > > ago when > > he was 25. It was the usual story; admitted to the hospital with > > spiking > > fevers, he was examined by almost every specialist there is and > > given every > > test in the book. On the sixth day, a rheumatologist arrived, looked > > at the > > chart, asked two questions, and diagnosed him with Still's. One of > the > > questions was did you have JRA as a child? The answer was yes when > > he was > > eight years old. He was treated with six months of aspirin therapy > > (30 tabs > > of baby aspirin per day) and he went into total remission until that > > summer > > some 17 years later when AOSD struck... Despite all of the drugs he > > has been > > on over the years, his disease continues unabated and is still > > ravaging his > > body. > > > > Within 18 months of the onset of the disease he had his first hip > > replacement, followed a year later by the second one. Then in year 4 > > he had > > his first knee replacement and then his second one sometime later. > > He had a > > C2-C4 vertebrae fusion, a procedure that requires the head to be > > immobilized > > with a metal ring screwed into the skull and sleeping upright in a > > chair for > > 3 months. Both ankles and feet are fused with plates and pins. Bones > > in his > > hands have fused spontaneously and recently he had jaw surgery to > > correct a > > problem in one of the joints. His shoulders are extremely painful > > but he > > wants to put off those joint replacements as long as he can. > > > > He has been on Plaquenil, Methotrexate, Arava, Enbrel, Celebrex and > > now > > Orencia. His pain meds have included over the years: Tramadol > > (Ultram), > > Oxycodone, and a few others. Prednisone has been his mainstay; he is > > currently on 15 mg a day, but at times up to 80 mg per day. He also > > takes > > 200 mg of Celebrex 2x daily, Orencia - one infusion per month and > > Oxycodone > > for pain as needed. He was on Tramadol, but became addicted to it > > and had to > > go through full-blown withdrawal (sweats, chills, cramps, etc.) to > > get off > > of it. > > > > For those of you who are new members and have recently been > > diagnosed, I do > > not wish to frighten you with all of these details. Andy's case is > > very > > extreme and it is rare that Stills patients have this many problems. > > So, it > > doesn't mean that your disease will progress in this fashion. I list > > his > > background and his drug regimens here so that people whose joints > > are more > > affected than others can help me and Andy with some possible > > solutions. > > > > Despite his problems he continues to work full time as a private > > school > > teacher, has a loving wife, a 2 year old son, and one (a girl) on > > the way. > > However, his rheumatologist is concerned (and so am I) about the > > disease and > > its progression. Orencia is not having the desired effect and he is > > searching for alternatives. > > > > That's where all of you can help. I would like to hear in some > > detail what > > has helped you. I know all of the drugs that are on the market today > > and a > > few that are in Phase III testing. What I am looking for is what has > > worked > > for you. The more specific you can be the better I will be able to > > assist > > Andy and his doctor in looking at what works in Stills patients and > > what > > doesn't. I know that all people are different and what works for one > > won't > > necessarily work for another. Even though Andy has been on a number > > of the > > more powerful drugs that haven't worked, maybe some of you have > tried > > various combinations that he has not.. I know that his doctor is > > struggling > > to find a solution. Most rheumatologist don't have that many Still's > > patients and they are just as eager to hear about possible > > combinations that > > have worked for other people. Let's face it, there is not much > > research > > going on about Stills and doctors are left to their own devices to > go > > through a process of trial and error to find out how the person > > responds to > > each drug or combination. That is the nature of the beast today. > > > > Thanks, > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 No, I started on 60mg prednisone, 600mg ibuprofen 3x/day. Then when I started Kineret I was able to start tapering the prednisone. Of course I'm taking calcium, multivitamins, etc. And while on the prednisone I used a couple of different sleeping medicines. That's all I have had to deal with (so far). > Thanks for the info. > I may have missed it but where you on anything else in combination > with the Kineret besides steroids? > > ________________________________ > > To: Stillsdisease > Sent: Thursday, December 18, 2008 9:56:28 AM > Subject: Re: New/Old Member - Andy > > Hi , > I can still hardly believe it (there must be a psychological component > to this), but I felt different within a few minutes of taking the > first injection. Within an hour I felt the " brain fog " lifting, and I > remembered what it was like to feel normal. Of course not every day is > that good, but in general I am so close to feeling normal again that I > have to look carefully to be sure if I am noticing a symptom. > > Good luck - I hope it works as well for you. > > > > > > Hi , > > > > I am new to the group, been here for a couple of weeks. Already > > found great support and new friends. > > > > Do you remember how long the Kineret took for you to start seeing > > results? > > > > I am ready to get it started, many people have said it was what had > > finally worked for them. > > > > Stay well, good luck on your dissertation, I remember those days, > > > > > > ____________ _________ _________ __ > > From: D Prince <bprincerice (DOT) edu> > > To: Stillsdisease@ yahoogroups. com > > Sent: Thursday, December 18, 2008 9:32:59 AM > > Subject: Re: New/Old Member - Andy > > > > Hi , hello everyone, > > > > I have not posted anything for a while; the good news is that this > is > > because I have improved enormously since this summer (when I was > > diagnosed and joined the group). I have been on Kineret since early > > July, and have kept improving since I began it. I was able to get > off > > prednisone in October, and am now even reducing the amount of > > ibuprofen I take daily (my creatinine levels were up some at the > last > > round of tests, so the doc asked me to reduce it if I can). > > > > I have been able to get back to my " job " (I'm a graduate student > > writing a dissertation right now) this semester, and I was able to > > complete the semester normally, without having to cut back on what I > > am doing - except for the days I missed things because I was waiting > > for Fedex or UPS to deliver Kineret, and they were late showing > up... > > > > To summarize: I am now taking Kineret daily, and 200mg of ibuprofen > > 3x/ > > day. I have some slight soreness in muscles from time to time, but > > nothing serious. My labs are all normal, so I suppose I am in (drug- > > induced) remission. > > > > I also wanted to say that I have been reading the posts pretty much > > every day, even though I have not written back in a while. I want to > > thank everyone for their messages - even though I am feeling very > > good, there is still uncertainty about the future, and it is really > > wonderful to hear from others who are dealing with this and know you > > are out there.. I wish you all pain-free days and lots of happiness, > > especially during the holidays. > > > > > > > > > > > Hello Group > > > > > > My name is Puente and my son Andy has Still's disease. I > was a > > > member > > > of the group a few years ago and some of the old timers may > remember > > > me. I > > > have rejoined in order to learn about new medications and > treatments > > > that > > > people have tried; what worked and what didn't. > > > > > > First, for the newer people in the group, as well as updating the > > > older > > > members (Cat - sorry about not staying in touch, too much > happening > > > with > > > Andy), let me give you Andy's background. He was diagnosed 14 > years > > > ago when > > > he was 25. It was the usual story; admitted to the hospital with > > > spiking > > > fevers, he was examined by almost every specialist there is and > > > given every > > > test in the book. On the sixth day, a rheumatologist arrived, > looked > > > at the > > > chart, asked two questions, and diagnosed him with Still's. One of > > the > > > questions was did you have JRA as a child? The answer was yes when > > > he was > > > eight years old. He was treated with six months of aspirin therapy > > > (30 tabs > > > of baby aspirin per day) and he went into total remission until > that > > > summer > > > some 17 years later when AOSD struck... Despite all of the drugs > he > > > has been > > > on over the years, his disease continues unabated and is still > > > ravaging his > > > body. > > > > > > Within 18 months of the onset of the disease he had his first hip > > > replacement, followed a year later by the second one. Then in > year 4 > > > he had > > > his first knee replacement and then his second one sometime later. > > > He had a > > > C2-C4 vertebrae fusion, a procedure that requires the head to be > > > immobilized > > > with a metal ring screwed into the skull and sleeping upright in a > > > chair for > > > 3 months. Both ankles and feet are fused with plates and pins. > Bones > > > in his > > > hands have fused spontaneously and recently he had jaw surgery to > > > correct a > > > problem in one of the joints. His shoulders are extremely painful > > > but he > > > wants to put off those joint replacements as long as he can. > > > > > > He has been on Plaquenil, Methotrexate, Arava, Enbrel, Celebrex > and > > > now > > > Orencia. His pain meds have included over the years: Tramadol > > > (Ultram), > > > Oxycodone, and a few others. Prednisone has been his mainstay; > he is > > > currently on 15 mg a day, but at times up to 80 mg per day. He > also > > > takes > > > 200 mg of Celebrex 2x daily, Orencia - one infusion per month and > > > Oxycodone > > > for pain as needed. He was on Tramadol, but became addicted to it > > > and had to > > > go through full-blown withdrawal (sweats, chills, cramps, etc.) to > > > get off > > > of it. > > > > > > For those of you who are new members and have recently been > > > diagnosed, I do > > > not wish to frighten you with all of these details. Andy's case is > > > very > > > extreme and it is rare that Stills patients have this many > problems. > > > So, it > > > doesn't mean that your disease will progress in this fashion. I > list > > > his > > > background and his drug regimens here so that people whose joints > > > are more > > > affected than others can help me and Andy with some possible > > > solutions. > > > > > > Despite his problems he continues to work full time as a private > > > school > > > teacher, has a loving wife, a 2 year old son, and one (a girl) on > > > the way. > > > However, his rheumatologist is concerned (and so am I) about the > > > disease and > > > its progression. Orencia is not having the desired effect and he > is > > > searching for alternatives. > > > > > > That's where all of you can help. I would like to hear in some > > > detail what > > > has helped you. I know all of the drugs that are on the market > today > > > and a > > > few that are in Phase III testing. What I am looking for is what > has > > > worked > > > for you. The more specific you can be the better I will be able to > > > assist > > > Andy and his doctor in looking at what works in Stills patients > and > > > what > > > doesn't. I know that all people are different and what works for > one > > > won't > > > necessarily work for another. Even though Andy has been on a > number > > > of the > > > more powerful drugs that haven't worked, maybe some of you have > > tried > > > various combinations that he has not.. I know that his doctor is > > > struggling > > > to find a solution. Most rheumatologist don't have that many > Still's > > > patients and they are just as eager to hear about possible > > > combinations that > > > have worked for other people. Let's face it, there is not much > > > research > > > going on about Stills and doctors are left to their own devices to > > go > > > through a process of trial and error to find out how the person > > > responds to > > > each drug or combination. That is the nature of the beast today. > > > > > > Thanks, > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 , I'm so sorry to hear about Andy's extreme problems with AOSD. It is so wonderful that he has grown up well and has a wonderful wife and child(ren). I haven't posted very much lately, just because life has been so crazy lately....but I did want to tell you that I have had some success on Rituxen. I tried Kineret, Humira, Enbrel and Orencia...always with prednisone and methotrexate. The only one that has given me relief for an extended amount of time...and by relief, I mean less pain and more energy, is Rituxen. My first round was last July and I can tell it's wearing off now. My Dr has ordered me to go ahead and get the next round. It's an infusion that takes about 5 hours, you get one infusion, then go back in 2 weeks for a second round. Then you don't have to go back for 6 months....although some get to go back after 4 months. I am taking it in conjunction with the MTX and pred...the key to see if it is really working is to get off the prednisone. I'm weaning myself down...and only down to 22.5 mg per day now. I just wanted to congratulate you on successfully raising this young man with an awful disease, who obviously isn't going to let anyone or anything stop him for doing anything! Hurray!!! And I also wanted to tell you about the Rituxen. BTW...have you all discussed stem cell transplant? in TX ----- Original Message ----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 , I'm so sorry to hear about Andy's extreme problems with AOSD. It is so wonderful that he has grown up well and has a wonderful wife and child(ren). I haven't posted very much lately, just because life has been so crazy lately....but I did want to tell you that I have had some success on Rituxen. I tried Kineret, Humira, Enbrel and Orencia...always with prednisone and methotrexate. The only one that has given me relief for an extended amount of time...and by relief, I mean less pain and more energy, is Rituxen. My first round was last July and I can tell it's wearing off now. My Dr has ordered me to go ahead and get the next round. It's an infusion that takes about 5 hours, you get one infusion, then go back in 2 weeks for a second round. Then you don't have to go back for 6 months....although some get to go back after 4 months. I am taking it in conjunction with the MTX and pred...the key to see if it is really working is to get off the prednisone. I'm weaning myself down...and only down to 22.5 mg per day now. I just wanted to congratulate you on successfully raising this young man with an awful disease, who obviously isn't going to let anyone or anything stop him for doing anything! Hurray!!! And I also wanted to tell you about the Rituxen. BTW...have you all discussed stem cell transplant? in TX ----- Original Message ----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 , My Still's was severe at onset and could not be controlled simply with Prednisone. My onset was in the late seventies. The new drug at that time that put my Still's in to remission in the eighties was D-Penacillamine, also called Cupramine. I was able to get off the Prednisone. It is still available today and may help your son. I am still in remission today and other than a mild flare here and there I do extremely well. My hopes are that any of this may help. Keep searching and the best of luck to you and yours. New/Old Member - Andy Hello Group My name is Puente and my son Andy has Still's disease. I list his background and his drug regimens here so that people whose joints are more affected than others can help me and Andy with some possible solutions. That's where all of you can help. I would like to hear in some detail what has helped you. I know all of the drugs that are on the market today and a few that are in Phase III testing. What I am looking for is what has worked for you. The more specific you can be the better I will be able to assist Andy and his doctor in looking at what works in Stills patients and what doesn't. I know that all people are different and what works for one won't necessarily work for another. Even though Andy has been on a number of the more powerful drugs that haven't worked, maybe some of you have tried various combinations that he has not. I know that his doctor is struggling to find a solution. Most rheumatologist don't have that many Still's patients and they are just as eager to hear about possible combinations that have worked for other people. Let's face it, there is not much research going on about Stills and doctors are left to their own devices to go through a process of trial and error to find out how the person responds to each drug or combination. That is the nature of the beast today. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 , My Still's was severe at onset and could not be controlled simply with Prednisone. My onset was in the late seventies. The new drug at that time that put my Still's in to remission in the eighties was D-Penacillamine, also called Cupramine. I was able to get off the Prednisone. It is still available today and may help your son. I am still in remission today and other than a mild flare here and there I do extremely well. My hopes are that any of this may help. Keep searching and the best of luck to you and yours. New/Old Member - Andy Hello Group My name is Puente and my son Andy has Still's disease. I list his background and his drug regimens here so that people whose joints are more affected than others can help me and Andy with some possible solutions. That's where all of you can help. I would like to hear in some detail what has helped you. I know all of the drugs that are on the market today and a few that are in Phase III testing. What I am looking for is what has worked for you. The more specific you can be the better I will be able to assist Andy and his doctor in looking at what works in Stills patients and what doesn't. I know that all people are different and what works for one won't necessarily work for another. Even though Andy has been on a number of the more powerful drugs that haven't worked, maybe some of you have tried various combinations that he has not. I know that his doctor is struggling to find a solution. Most rheumatologist don't have that many Still's patients and they are just as eager to hear about possible combinations that have worked for other people. Let's face it, there is not much research going on about Stills and doctors are left to their own devices to go through a process of trial and error to find out how the person responds to each drug or combination. That is the nature of the beast today. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 , My Still's was severe at onset and could not be controlled simply with Prednisone. My onset was in the late seventies. The new drug at that time that put my Still's in to remission in the eighties was D-Penacillamine, also called Cupramine. I was able to get off the Prednisone. It is still available today and may help your son. I am still in remission today and other than a mild flare here and there I do extremely well. My hopes are that any of this may help. Keep searching and the best of luck to you and yours. New/Old Member - Andy Hello Group My name is Puente and my son Andy has Still's disease. I list his background and his drug regimens here so that people whose joints are more affected than others can help me and Andy with some possible solutions. That's where all of you can help. I would like to hear in some detail what has helped you. I know all of the drugs that are on the market today and a few that are in Phase III testing. What I am looking for is what has worked for you. The more specific you can be the better I will be able to assist Andy and his doctor in looking at what works in Stills patients and what doesn't. I know that all people are different and what works for one won't necessarily work for another. Even though Andy has been on a number of the more powerful drugs that haven't worked, maybe some of you have tried various combinations that he has not. I know that his doctor is struggling to find a solution. Most rheumatologist don't have that many Still's patients and they are just as eager to hear about possible combinations that have worked for other people. Let's face it, there is not much research going on about Stills and doctors are left to their own devices to go through a process of trial and error to find out how the person responds to each drug or combination. That is the nature of the beast today. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Brain thanks for posting. It is story's like yours that give a lot of hope to many here. some of us long time members know things can change from the bad to a better but when a new person comes here filled with worry and scarred to death with all the things they are just learning it is a comfort I bet to see things like this now and then because it give that hope we all need in life so thanks for your post because even as an old timer of sorts here I to need to be reminded now and then of how it can be because my memory's of the remissions days I did enjoy are becoming dimmer by the day as the stills becomes more active so thanks the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58 To learn about Stills Disease http://www.stillsdisease.org/stills_info For conservitive minded people http://www.americac2c.org " If we ever forget that we're one nation under God, then we will be a nation gone under. " ~ Reagan In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown A nation can survive its fools and even the ambitious. But it cannot survive treason from within.~Cicero " The most terrifying words in the English language are: I'm from the government and I'm here to help. " ~ Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Brain thanks for posting. It is story's like yours that give a lot of hope to many here. some of us long time members know things can change from the bad to a better but when a new person comes here filled with worry and scarred to death with all the things they are just learning it is a comfort I bet to see things like this now and then because it give that hope we all need in life so thanks for your post because even as an old timer of sorts here I to need to be reminded now and then of how it can be because my memory's of the remissions days I did enjoy are becoming dimmer by the day as the stills becomes more active so thanks the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58 To learn about Stills Disease http://www.stillsdisease.org/stills_info For conservitive minded people http://www.americac2c.org " If we ever forget that we're one nation under God, then we will be a nation gone under. " ~ Reagan In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown A nation can survive its fools and even the ambitious. But it cannot survive treason from within.~Cicero " The most terrifying words in the English language are: I'm from the government and I'm here to help. " ~ Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Brain thanks for posting. It is story's like yours that give a lot of hope to many here. some of us long time members know things can change from the bad to a better but when a new person comes here filled with worry and scarred to death with all the things they are just learning it is a comfort I bet to see things like this now and then because it give that hope we all need in life so thanks for your post because even as an old timer of sorts here I to need to be reminded now and then of how it can be because my memory's of the remissions days I did enjoy are becoming dimmer by the day as the stills becomes more active so thanks the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58 To learn about Stills Disease http://www.stillsdisease.org/stills_info For conservitive minded people http://www.americac2c.org " If we ever forget that we're one nation under God, then we will be a nation gone under. " ~ Reagan In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown A nation can survive its fools and even the ambitious. But it cannot survive treason from within.~Cicero " The most terrifying words in the English language are: I'm from the government and I'm here to help. " ~ Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 and Andy I wish I could give you some wisdom that would help you two out but that I can not do being I never have had much joint problems but more organ doings with my stills. but it was nice to see and here that even with stills how much of a fighter Andy is still and for that thank you as many of us know what that takes as for help I sure hope others here can give you some and if not maybe a letter to Dr Cursh (spelling ) in Texas might. to my thinking nothing is a wast even if I receive nothing back because in that case I am right were I am at now but make as much noise as you two can and use every thing you can so here is hoping some were some how some one can give you or lead you to the help ya need the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58 To learn about Stills Disease http://www.stillsdisease.org/stills_info For conservitive minded people http://www.americac2c.org " If we ever forget that we're one nation under God, then we will be a nation gone under. " ~ Reagan In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown A nation can survive its fools and even the ambitious. But it cannot survive treason from within.~Cicero " The most terrifying words in the English language are: I'm from the government and I'm here to help. " ~ Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 and Andy I wish I could give you some wisdom that would help you two out but that I can not do being I never have had much joint problems but more organ doings with my stills. but it was nice to see and here that even with stills how much of a fighter Andy is still and for that thank you as many of us know what that takes as for help I sure hope others here can give you some and if not maybe a letter to Dr Cursh (spelling ) in Texas might. to my thinking nothing is a wast even if I receive nothing back because in that case I am right were I am at now but make as much noise as you two can and use every thing you can so here is hoping some were some how some one can give you or lead you to the help ya need the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58 To learn about Stills Disease http://www.stillsdisease.org/stills_info For conservitive minded people http://www.americac2c.org " If we ever forget that we're one nation under God, then we will be a nation gone under. " ~ Reagan In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown A nation can survive its fools and even the ambitious. But it cannot survive treason from within.~Cicero " The most terrifying words in the English language are: I'm from the government and I'm here to help. " ~ Reagan Quote Link to comment Share on other sites More sharing options...
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