Guest guest Posted January 21, 2000 Report Share Posted January 21, 2000 In a message dated 1/21/00 4:01:42 PM Eastern Standard Time, neny@... writes: << After I finished reading, I had a power bar and did the Basic tape...and I felt WONDERFUL afterwards.... Well, back to work for me..... I hope everyone has a great weekend, full of fun and Tae-Bo! (^-^) >> Way to go !! That's the spirit!! You should be very proud!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2000 Report Share Posted January 21, 2000 In a message dated 1/21/00 4:01:42 PM Eastern Standard Time, neny@... writes: << After I finished reading, I had a power bar and did the Basic tape...and I felt WONDERFUL afterwards.... Well, back to work for me..... I hope everyone has a great weekend, full of fun and Tae-Bo! (^-^) >> Way to go !! That's the spirit!! You should be very proud!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2000 Report Share Posted January 21, 2000 In a message dated 1/21/00 4:01:42 PM Eastern Standard Time, neny@... writes: << After I finished reading, I had a power bar and did the Basic tape...and I felt WONDERFUL afterwards.... Well, back to work for me..... I hope everyone has a great weekend, full of fun and Tae-Bo! (^-^) >> Way to go !! That's the spirit!! You should be very proud!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2001 Report Share Posted April 7, 2001 Hi Pattie, Welcome back! Sorry to hear that your son is having such a rough go of things right now. If you don't mind, I'd like to ask a question about his Hypogammaglobulinemia/CVID combination. I've noticed several posts here where CVID follows my son (the fact that all IG's are affected), but yet he's always been termed as " Hypo " . I've also seen posts where people refer to " Hypo " as CVID. In your son, is it two seperate deficiencies along with Schwachman's being a third? Since you listed this combination for your son, I thought you'd be a good person to ask this to. Thank you. Any input will be helpful. And by the way, I'm sorry to hear that your son has more than one deficiency going on! One alone is enough for a person, so I can only imagine that your son's case is very involved and complicated. God bless! , mother of Chad, age 9, " Hypo " , GERD, Asthma/Bronchitis, " Allergy King " , Scoliosis, ??IGA Nephropathy, Anemia hello > > Hi-- I am new to the list-- N and Jan M told me about it. I have > three boys, two have Shwachman-Diamond Syndrome (one with the SDS has > CVID, too) and one healthy guy. > > I went to a conference in Italy last week and didn't keep up witht he > mail. is SICK again-- if it isn't the SDS, then it is the CVID.. > I'm sure many of you can relate. I just wanted to say hello:0) And I > hope that we can all be well for Easter.. wouldn't THAT be the BEST > easter gift the Bunny could bring???? > -- > ~Pattie~ Mom to , almost 5 (Shwachman-Diamond Syndrome, > hypogammaglobulinemia/CVID; ph 3 1/2 Shwachman-Diamond Syndrome, and > 7 Healthy as a hoarse! > " a person's a person, no matter how small " ~~ Dr. Seuss > > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2001 Report Share Posted April 7, 2001 Hi -- 's CVID/hypo-- is separate from the Shwachman-Diamond Syndrome. The immunologist and the hematologist think he just drew the wrong straw twice, so to speak. ph only has Shwachman-Diamond Syndrome... both boys have leukopenia (low white blood cells) lymphopenia (low lymphocytes) neutropenia (low neutrophils) also has anemia. 's total IgG is low, and he is deficient in IgG subclass 1 and he is also deficient in IgM and on the low-end of normal for IgA. I think he may be deficient in subclass 4, but don't have the record right in fromnt of me at the moment-- it is just slightly depressed. IgG 1 is really low. I have been so focused on the SDS that I really don't know all that much about the CVID... I do plan on going to the conference this summer- what about you guys? -- ~Pattie~ " a person's a person, no matter how small " ~~ Dr. Seuss Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2001 Report Share Posted April 7, 2001 Hi -- 's CVID/hypo-- is separate from the Shwachman-Diamond Syndrome. The immunologist and the hematologist think he just drew the wrong straw twice, so to speak. ph only has Shwachman-Diamond Syndrome... both boys have leukopenia (low white blood cells) lymphopenia (low lymphocytes) neutropenia (low neutrophils) also has anemia. 's total IgG is low, and he is deficient in IgG subclass 1 and he is also deficient in IgM and on the low-end of normal for IgA. I think he may be deficient in subclass 4, but don't have the record right in fromnt of me at the moment-- it is just slightly depressed. IgG 1 is really low. I have been so focused on the SDS that I really don't know all that much about the CVID... I do plan on going to the conference this summer- what about you guys? -- ~Pattie~ " a person's a person, no matter how small " ~~ Dr. Seuss Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2001 Report Share Posted April 7, 2001 Hi -- 's CVID/hypo-- is separate from the Shwachman-Diamond Syndrome. The immunologist and the hematologist think he just drew the wrong straw twice, so to speak. ph only has Shwachman-Diamond Syndrome... both boys have leukopenia (low white blood cells) lymphopenia (low lymphocytes) neutropenia (low neutrophils) also has anemia. 's total IgG is low, and he is deficient in IgG subclass 1 and he is also deficient in IgM and on the low-end of normal for IgA. I think he may be deficient in subclass 4, but don't have the record right in fromnt of me at the moment-- it is just slightly depressed. IgG 1 is really low. I have been so focused on the SDS that I really don't know all that much about the CVID... I do plan on going to the conference this summer- what about you guys? -- ~Pattie~ " a person's a person, no matter how small " ~~ Dr. Seuss Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2001 Report Share Posted August 19, 2001 Hi Lorri, Having gone through a situation last year with my 11 year old I can relate to what you are going through. My experience told me that it was an adult matter and that kids are cruel often out of ignorance. came to me about a little girl who was her best friend in the past that she was talking about sexual things and inappropriate behaviors. She was very concernded. I went to the little girls mother who blew it off and then talked to her daughter who flat out denied that it was happening. Then rumors started at school about my daughter and she was devastated. knew who had started the rumors and I encouraged her to remember that she was doing the right thing to come to an adult if she had concerns about behavior and to stand up for what she believed to be right. She initially was ostasized from the group. My husband and I went in and talked with the counselor as well as the principal and the school handled it very well. It was a wonderful lesson that took several weeks to get through . In the end we adults guided the kids through gossiping, individual opinion and the need to come to adults when kids are being cuel to other kids. The girls in the class learned some valueable lessons that will carry them through life. I strongly encourage you to go to the camp leaders as well as the school and help to work through this. The movie is only a part of the issue. The rest of it is feeling good about herself and how she relates to the world. had many tears and fears but in the end she is a much stronger person by facing it and not trying to convince others but allow others to see the truth through her. Feel free to have email . Remember she too has had alot of health care problems and would be a great pen pal. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2001 Report Share Posted August 19, 2001 Hi Lorri, Having gone through a situation last year with my 11 year old I can relate to what you are going through. My experience told me that it was an adult matter and that kids are cruel often out of ignorance. came to me about a little girl who was her best friend in the past that she was talking about sexual things and inappropriate behaviors. She was very concernded. I went to the little girls mother who blew it off and then talked to her daughter who flat out denied that it was happening. Then rumors started at school about my daughter and she was devastated. knew who had started the rumors and I encouraged her to remember that she was doing the right thing to come to an adult if she had concerns about behavior and to stand up for what she believed to be right. She initially was ostasized from the group. My husband and I went in and talked with the counselor as well as the principal and the school handled it very well. It was a wonderful lesson that took several weeks to get through . In the end we adults guided the kids through gossiping, individual opinion and the need to come to adults when kids are being cuel to other kids. The girls in the class learned some valueable lessons that will carry them through life. I strongly encourage you to go to the camp leaders as well as the school and help to work through this. The movie is only a part of the issue. The rest of it is feeling good about herself and how she relates to the world. had many tears and fears but in the end she is a much stronger person by facing it and not trying to convince others but allow others to see the truth through her. Feel free to have email . Remember she too has had alot of health care problems and would be a great pen pal. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2001 Report Share Posted August 19, 2001 Hi, Lorri. I'm sorry about what happened to at camp. I agree with Barbie. I'd contact the camp. I'd also go into school and talk to the principal, counselor, and all teachers who work with . I'd do this before even starts school so everyone is aware of the situation. I would let them know what happened at camp, explain her disease, and why she is sensitive to the situation. I would also nicely let them know that you will not put up with any type of harassment from other students whether it be in school, on the bus, etc., and since you are alerting them now they will be held accountable. Children can be so cruel ... as if our kids don't have enough to deal with. Here is something else I thought about regarding " Bubble Boy. It will probably be out on video by spring of 2002. Even though it is rated PG13 I can see some junior high schools or older kids groups showing it (without knowing it might be offensive to some people) for a special reward or activity ... especially since it is a Disney film (and we trust Disney, right??? :-P). Maybe not this year, but within the next couple of years when all the protest dies down. This is something we may want to keep an eye on ... not to be paranoid and fanatical ... just realistic. Kathy, mom to Isaac, 9, CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2001 Report Share Posted August 19, 2001 Hi, Lorri. I'm sorry about what happened to at camp. I agree with Barbie. I'd contact the camp. I'd also go into school and talk to the principal, counselor, and all teachers who work with . I'd do this before even starts school so everyone is aware of the situation. I would let them know what happened at camp, explain her disease, and why she is sensitive to the situation. I would also nicely let them know that you will not put up with any type of harassment from other students whether it be in school, on the bus, etc., and since you are alerting them now they will be held accountable. Children can be so cruel ... as if our kids don't have enough to deal with. Here is something else I thought about regarding " Bubble Boy. It will probably be out on video by spring of 2002. Even though it is rated PG13 I can see some junior high schools or older kids groups showing it (without knowing it might be offensive to some people) for a special reward or activity ... especially since it is a Disney film (and we trust Disney, right??? :-P). Maybe not this year, but within the next couple of years when all the protest dies down. This is something we may want to keep an eye on ... not to be paranoid and fanatical ... just realistic. Kathy, mom to Isaac, 9, CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2001 Report Share Posted October 28, 2001 Hi - Welcome to the group! I think you'll find this site to be a really good source of information and it's a great group of people who understand what you are going through. I was diagnosed in January of 2000 and went into remission in August of 2000. I read all of the posts every day but I usually don't say to much, I guess because I feel I don't have too much to offer - there are so many more people here who have had a much rockier road than mine. I think so much of my easy/fast recovery is that I was very lucky not to have to work and I was able to really rest and take care of myself during the time I was sick. So far the only meds I've been on are Prednisone. Right now I'm not on anything -- just Extra Strength Tylenol when needed and plenty of rest when my body tells me I need it. I'm also from Wisconsin! I live in Oak Creek, which is just south of Milwaukee -- where are you? There are a few of us here from Wisconsin. Tricia is one and she is currently not feeling well and is taking a break from the board here, but as soon as she returns I'm sure she would love to 'chat' with you. Again welcome and I'm sure you'll find this a place where you can talk about Still's and learn a great deal. Janet hello > > Hi there~ > > My name is and I am new to this group. I live in Wisconsin and have been diagnosed with stills for about 11 years. I have been on methotrexate and folic acid for ABOUT 4 years. I am not on anything else. I became very ill again and the other meds I had been using stopped working. Metho keeps the symptoms to a tolerable level and it is cheap. I'd love to get off of it though~ I hate the nausea. However, I don't have medical insurance....oh well. I am a certified teacher who is an on-staff substitute at a high school, so I work everyday in sometimes difficult circumstances but am not treated as a real employee. I have been divorced for about 7 years and I have 2 children~ 18 and 20. I am 46 years old. I am doing pretty well health-wise other than some pain and being tired all the time. The Rheum. believes I have fibromyalgia, but I don't know......what can be done about it anyway? I also deal with hypothyroidism. It has been interesting reading the mess! > ages about anti-depressants. My doc wanted to put me on one, but I wasn't able to tolerate the two we tried. I can't afford it anyway. And really, I would say that most of the time I feel quite positive and happy. It's just that I am often very tired and I have trouble doing the things that I want to do and the things that I should be doing to improve my life (finding a better job, etc.) Gee!!! I sound like such a complainer~ I try not to be! Am I supposed to put my birthday into this bio? ~~ it's Jan. 15. Thanks for this opportunity. I hope that you all have a good day. julia > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2001 Report Share Posted October 28, 2001 Hi - Welcome to the group! I think you'll find this site to be a really good source of information and it's a great group of people who understand what you are going through. I was diagnosed in January of 2000 and went into remission in August of 2000. I read all of the posts every day but I usually don't say to much, I guess because I feel I don't have too much to offer - there are so many more people here who have had a much rockier road than mine. I think so much of my easy/fast recovery is that I was very lucky not to have to work and I was able to really rest and take care of myself during the time I was sick. So far the only meds I've been on are Prednisone. Right now I'm not on anything -- just Extra Strength Tylenol when needed and plenty of rest when my body tells me I need it. I'm also from Wisconsin! I live in Oak Creek, which is just south of Milwaukee -- where are you? There are a few of us here from Wisconsin. Tricia is one and she is currently not feeling well and is taking a break from the board here, but as soon as she returns I'm sure she would love to 'chat' with you. Again welcome and I'm sure you'll find this a place where you can talk about Still's and learn a great deal. Janet hello > > Hi there~ > > My name is and I am new to this group. I live in Wisconsin and have been diagnosed with stills for about 11 years. I have been on methotrexate and folic acid for ABOUT 4 years. I am not on anything else. I became very ill again and the other meds I had been using stopped working. Metho keeps the symptoms to a tolerable level and it is cheap. I'd love to get off of it though~ I hate the nausea. However, I don't have medical insurance....oh well. I am a certified teacher who is an on-staff substitute at a high school, so I work everyday in sometimes difficult circumstances but am not treated as a real employee. I have been divorced for about 7 years and I have 2 children~ 18 and 20. I am 46 years old. I am doing pretty well health-wise other than some pain and being tired all the time. The Rheum. believes I have fibromyalgia, but I don't know......what can be done about it anyway? I also deal with hypothyroidism. It has been interesting reading the mess! > ages about anti-depressants. My doc wanted to put me on one, but I wasn't able to tolerate the two we tried. I can't afford it anyway. And really, I would say that most of the time I feel quite positive and happy. It's just that I am often very tired and I have trouble doing the things that I want to do and the things that I should be doing to improve my life (finding a better job, etc.) Gee!!! I sound like such a complainer~ I try not to be! Am I supposed to put my birthday into this bio? ~~ it's Jan. 15. Thanks for this opportunity. I hope that you all have a good day. julia > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Good morning and welcome to our group! Wow, it sounds like you've had a rough road. My name is Kim and I'm kinda new also. My onset of the disease was this past April. It's been hard trying to get the right med combo but I think I'm finally on my way. I found this group early on and it's been my saving grace for sure!!! There is so much support here. You mentioned fibromyalgia. I have that as well and from what my doctor, Dr. Cush, says....one feuls the other...so it's a visious cycle. There are things you can do to make it better. Here's a link to my page with some info. I'll gladly send you a hard copy if you can't read it for any reason. I hope it helps. http://www.kimdaves.com/fibromyalgia.htm I bothers me beyond belief when I hear of those without insurance and who can't get the help they need. I am NO medical doctor and like I said this disease is new to me....but it sounds like enbrel may be a solution for you. Has your doctor mentioned it? I know it's expensive, but sometimes drug companies will support those that don't have insurance. Does anyone know if the company that makes enbrel will do this? I wish you the very best of luck and health...please keep us posted on how you're doing. Love, Kim julia wrote: Hi there~ My name is and I am new to this group. I live in Wisconsin and have been diagnosed with stills for about 11 years. I have been on methotrexate and folic acid for ABOUT 4 years. I am not on anything else. I became very ill again and the other meds I had been using stopped working. Metho keeps the symptoms to a tolerable level and it is cheap. I'd love to get off of it though~ I hate the nausea. However, I don't have medical insurance....oh well. I am a certified teacher who is an on-staff substitute at a high school, so I work everyday in sometimes difficult circumstances but am not treated as a real employee. I have been divorced for about 7 years and I have 2 children~ 18 and 20. I am 46 years old. I am doing pretty well health-wise other than some pain and being tired all the time. The Rheum. believes I have fibromyalgia, but I don't know......what can be done about it anyway? I also deal with hypothyroidism. It has been interesting reading the messages about anti-depressants. My doc wanted to put me on one, but I wasn't able to tolerate the two we tried. I can't afford it anyway. And really, I would say that most of the time I feel quite positive and happy. It's just that I am often very tired and I have trouble doing the things that I want to do and the things that I should be doing to improve my life (finding a better job, etc.) Gee!!! I sound like such a complainer~ I try not to be! Am I supposed to put my birthday into this bio? ~~ it's Jan. 15. Thanks for this opportunity. I hope that you all have a good day. julia --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Good morning and welcome to our group! Wow, it sounds like you've had a rough road. My name is Kim and I'm kinda new also. My onset of the disease was this past April. It's been hard trying to get the right med combo but I think I'm finally on my way. I found this group early on and it's been my saving grace for sure!!! There is so much support here. You mentioned fibromyalgia. I have that as well and from what my doctor, Dr. Cush, says....one feuls the other...so it's a visious cycle. There are things you can do to make it better. Here's a link to my page with some info. I'll gladly send you a hard copy if you can't read it for any reason. I hope it helps. http://www.kimdaves.com/fibromyalgia.htm I bothers me beyond belief when I hear of those without insurance and who can't get the help they need. I am NO medical doctor and like I said this disease is new to me....but it sounds like enbrel may be a solution for you. Has your doctor mentioned it? I know it's expensive, but sometimes drug companies will support those that don't have insurance. Does anyone know if the company that makes enbrel will do this? I wish you the very best of luck and health...please keep us posted on how you're doing. Love, Kim julia wrote: Hi there~ My name is and I am new to this group. I live in Wisconsin and have been diagnosed with stills for about 11 years. I have been on methotrexate and folic acid for ABOUT 4 years. I am not on anything else. I became very ill again and the other meds I had been using stopped working. Metho keeps the symptoms to a tolerable level and it is cheap. I'd love to get off of it though~ I hate the nausea. However, I don't have medical insurance....oh well. I am a certified teacher who is an on-staff substitute at a high school, so I work everyday in sometimes difficult circumstances but am not treated as a real employee. I have been divorced for about 7 years and I have 2 children~ 18 and 20. I am 46 years old. I am doing pretty well health-wise other than some pain and being tired all the time. The Rheum. believes I have fibromyalgia, but I don't know......what can be done about it anyway? I also deal with hypothyroidism. It has been interesting reading the messages about anti-depressants. My doc wanted to put me on one, but I wasn't able to tolerate the two we tried. I can't afford it anyway. And really, I would say that most of the time I feel quite positive and happy. It's just that I am often very tired and I have trouble doing the things that I want to do and the things that I should be doing to improve my life (finding a better job, etc.) Gee!!! I sound like such a complainer~ I try not to be! Am I supposed to put my birthday into this bio? ~~ it's Jan. 15. Thanks for this opportunity. I hope that you all have a good day. julia --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Hi Janet~ Hi there! Thanks for the welcome. It sure is tough to read about the hard times that some have with stills. I'm not doinf too bad, but I keep hoping that I will go into remission some time. I try to think positive! I am located in Oconomowoc~ not that far from you. Again~ thanks so much for the welcome. ~j~ Janet Petry wrote: Hi - Welcome to the group! I think you'll find this site to be a really good source of information and it's a great group of people who understand what you are going through. I was diagnosed in January of 2000 and went into remission in August of 2000. I read all of the posts every day but I usually don't say to much, I guess because I feel I don't have too much to offer - there are so many more people here who have had a much rockier road than mine. I think so much of my easy/fast recovery is that I was very lucky not to have to work and I was able to really rest and take care of myself during the time I was sick. So far the only meds I've been on are Prednisone. Right now I'm not on anything -- just Extra Strength Tylenol when needed and plenty of rest when my body tells me I need it. I'm also from Wisconsin! I live in Oak Creek, which is just south of Milwaukee -- where are you? There are a few of us here from Wisconsin. Tricia is one and she is currently not feeling well and is taking a break from the board here, but as soon as she returns I'm sure she would love to 'chat' with you. Again welcome and I'm sure you'll find this a place where you can talk about Still's and learn a great deal. Janet --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Hi Janet~ Hi there! Thanks for the welcome. It sure is tough to read about the hard times that some have with stills. I'm not doinf too bad, but I keep hoping that I will go into remission some time. I try to think positive! I am located in Oconomowoc~ not that far from you. Again~ thanks so much for the welcome. ~j~ Janet Petry wrote: Hi - Welcome to the group! I think you'll find this site to be a really good source of information and it's a great group of people who understand what you are going through. I was diagnosed in January of 2000 and went into remission in August of 2000. I read all of the posts every day but I usually don't say to much, I guess because I feel I don't have too much to offer - there are so many more people here who have had a much rockier road than mine. I think so much of my easy/fast recovery is that I was very lucky not to have to work and I was able to really rest and take care of myself during the time I was sick. So far the only meds I've been on are Prednisone. Right now I'm not on anything -- just Extra Strength Tylenol when needed and plenty of rest when my body tells me I need it. I'm also from Wisconsin! I live in Oak Creek, which is just south of Milwaukee -- where are you? There are a few of us here from Wisconsin. Tricia is one and she is currently not feeling well and is taking a break from the board here, but as soon as she returns I'm sure she would love to 'chat' with you. Again welcome and I'm sure you'll find this a place where you can talk about Still's and learn a great deal. Janet --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2001 Report Share Posted November 3, 2001 Hi Eleanor, A Big Welcome to you! Glad you found this site because of the friends and info you will gain. Did you read the site? So much info there and also persona; histories of some of our members. The site is www.stillsdisease.org Feel free to ask any questions, I am sure you will get alot of replies with people who have similar symptoms as you. My name is Sheri and my mom Honey has still's. Take Care Sheri Hello Hi everyone. I'm new to the mailing list. I am a 36 year old female living in central NJ who recently was diagnosed with Stills. I would much appreciate any information you can share with me since this diagnosis has left me feeling down, confused, and in disbelief. Can anyone recommend any good rhematologists in NJ, PA or NY who have experience treating Stills patients? Has anyone had Lymes disesase prior to getting this disease? My theory is that Lymes eventually caused my immune system to become out of whack and cause this disease. Has anyone started with 4000 milligrams of aspririn a day to treat this? I started on it and started to feel pretty good and after a few weeks had stomach problems (nausea, vomiting and the fever returned). Now I'm on prednisone (15 mgs a day). I don't have any systemic problems (yet) and was hoping there was a treatment I could be on that's in between asprin and prednisone. Finally, does anyone experience general itching? This never seems to go away, neither do the rashes. Thanks, Eleanor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2001 Report Share Posted November 3, 2001 Hi Eleanor, A Big Welcome to you! Glad you found this site because of the friends and info you will gain. Did you read the site? So much info there and also persona; histories of some of our members. The site is www.stillsdisease.org Feel free to ask any questions, I am sure you will get alot of replies with people who have similar symptoms as you. My name is Sheri and my mom Honey has still's. Take Care Sheri Hello Hi everyone. I'm new to the mailing list. I am a 36 year old female living in central NJ who recently was diagnosed with Stills. I would much appreciate any information you can share with me since this diagnosis has left me feeling down, confused, and in disbelief. Can anyone recommend any good rhematologists in NJ, PA or NY who have experience treating Stills patients? Has anyone had Lymes disesase prior to getting this disease? My theory is that Lymes eventually caused my immune system to become out of whack and cause this disease. Has anyone started with 4000 milligrams of aspririn a day to treat this? I started on it and started to feel pretty good and after a few weeks had stomach problems (nausea, vomiting and the fever returned). Now I'm on prednisone (15 mgs a day). I don't have any systemic problems (yet) and was hoping there was a treatment I could be on that's in between asprin and prednisone. Finally, does anyone experience general itching? This never seems to go away, neither do the rashes. Thanks, Eleanor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2001 Report Share Posted November 3, 2001 Hi Eleanor, A Big Welcome to you! Glad you found this site because of the friends and info you will gain. Did you read the site? So much info there and also persona; histories of some of our members. The site is www.stillsdisease.org Feel free to ask any questions, I am sure you will get alot of replies with people who have similar symptoms as you. My name is Sheri and my mom Honey has still's. Take Care Sheri Hello Hi everyone. I'm new to the mailing list. I am a 36 year old female living in central NJ who recently was diagnosed with Stills. I would much appreciate any information you can share with me since this diagnosis has left me feeling down, confused, and in disbelief. Can anyone recommend any good rhematologists in NJ, PA or NY who have experience treating Stills patients? Has anyone had Lymes disesase prior to getting this disease? My theory is that Lymes eventually caused my immune system to become out of whack and cause this disease. Has anyone started with 4000 milligrams of aspririn a day to treat this? I started on it and started to feel pretty good and after a few weeks had stomach problems (nausea, vomiting and the fever returned). Now I'm on prednisone (15 mgs a day). I don't have any systemic problems (yet) and was hoping there was a treatment I could be on that's in between asprin and prednisone. Finally, does anyone experience general itching? This never seems to go away, neither do the rashes. Thanks, Eleanor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2001 Report Share Posted November 3, 2001 Hi Eleanor~ I am new too, at least to this message board~ not to stills! It takes a while to get the correct medication, but there are different treatments out there. I am on Methotrexate as I think many others are. I went on this med about 4 (?) years ago because everything else stopped working for me. Be careful with the prednisone~ I found out the hard way that if you miss a dose, you can become very ill~ you have to be taken off of it in steps. I know it works great, but I have a friend who was taking it for lymes and the medication destroyed part of his thigh bone. That might be rare but it is a powerful drug. That is an interesting question about Lymes~ I had a Lymes like rash after camping one year but always tested negative to that disease. I wonder too. You really need to find a good doctor who is familar with stills so that you can have proper treatment. Also~ I have heard of people itching but I have not experienced that. My stills rash hung around for a long time but eventually went away. Do you mainly get the rash later in the day and at night? That's how mine was anyway. Now, if the rash shows up, I know that I am in for a flare up or I'm under too much stress or something is out of kilter. Ask around to people you know too, someone might know of a good rheumatologist. These doctors handle different types of auto-immune type diseases, osteoarthritis, etc. Good luck and let us know how you are doing. Elan727@... wrote: Hi everyone. I'm new to the mailing list. I am a 36 year old female living in central NJ who recently was diagnosed with Stills. I would much appreciate any information you can share with me since this diagnosis has left me feeling down, confused, and in disbelief. Can anyone recommend any good rhematologists in NJ, PA or NY who have experience treating Stills patients? Has anyone had Lymes disesase prior to getting this disease? My theory is that Lymes eventually caused my immune system to become out of whack and cause this disease. Has anyone started with 4000 milligrams of aspririn a day to treat this? I started on it and started to feel pretty good and after a few weeks had stomach problems (nausea, vomiting and the fever returned). Now I'm on prednisone (15 mgs a day). I don't have any systemic problems (yet) and was hoping there was a treatment I could be on that's in between asprin and prednisone. Finally, does anyone experience general itching? This never seems to go away, neither do the rashes. Thanks, Eleanor Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2001 Report Share Posted November 3, 2001 Hi Eleanor~ I am new too, at least to this message board~ not to stills! It takes a while to get the correct medication, but there are different treatments out there. I am on Methotrexate as I think many others are. I went on this med about 4 (?) years ago because everything else stopped working for me. Be careful with the prednisone~ I found out the hard way that if you miss a dose, you can become very ill~ you have to be taken off of it in steps. I know it works great, but I have a friend who was taking it for lymes and the medication destroyed part of his thigh bone. That might be rare but it is a powerful drug. That is an interesting question about Lymes~ I had a Lymes like rash after camping one year but always tested negative to that disease. I wonder too. You really need to find a good doctor who is familar with stills so that you can have proper treatment. Also~ I have heard of people itching but I have not experienced that. My stills rash hung around for a long time but eventually went away. Do you mainly get the rash later in the day and at night? That's how mine was anyway. Now, if the rash shows up, I know that I am in for a flare up or I'm under too much stress or something is out of kilter. Ask around to people you know too, someone might know of a good rheumatologist. These doctors handle different types of auto-immune type diseases, osteoarthritis, etc. Good luck and let us know how you are doing. Elan727@... wrote: Hi everyone. I'm new to the mailing list. I am a 36 year old female living in central NJ who recently was diagnosed with Stills. I would much appreciate any information you can share with me since this diagnosis has left me feeling down, confused, and in disbelief. Can anyone recommend any good rhematologists in NJ, PA or NY who have experience treating Stills patients? Has anyone had Lymes disesase prior to getting this disease? My theory is that Lymes eventually caused my immune system to become out of whack and cause this disease. Has anyone started with 4000 milligrams of aspririn a day to treat this? I started on it and started to feel pretty good and after a few weeks had stomach problems (nausea, vomiting and the fever returned). Now I'm on prednisone (15 mgs a day). I don't have any systemic problems (yet) and was hoping there was a treatment I could be on that's in between asprin and prednisone. Finally, does anyone experience general itching? This never seems to go away, neither do the rashes. Thanks, Eleanor Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2001 Report Share Posted November 3, 2001 Hi Eleanor~ I am new too, at least to this message board~ not to stills! It takes a while to get the correct medication, but there are different treatments out there. I am on Methotrexate as I think many others are. I went on this med about 4 (?) years ago because everything else stopped working for me. Be careful with the prednisone~ I found out the hard way that if you miss a dose, you can become very ill~ you have to be taken off of it in steps. I know it works great, but I have a friend who was taking it for lymes and the medication destroyed part of his thigh bone. That might be rare but it is a powerful drug. That is an interesting question about Lymes~ I had a Lymes like rash after camping one year but always tested negative to that disease. I wonder too. You really need to find a good doctor who is familar with stills so that you can have proper treatment. Also~ I have heard of people itching but I have not experienced that. My stills rash hung around for a long time but eventually went away. Do you mainly get the rash later in the day and at night? That's how mine was anyway. Now, if the rash shows up, I know that I am in for a flare up or I'm under too much stress or something is out of kilter. Ask around to people you know too, someone might know of a good rheumatologist. These doctors handle different types of auto-immune type diseases, osteoarthritis, etc. Good luck and let us know how you are doing. Elan727@... wrote: Hi everyone. I'm new to the mailing list. I am a 36 year old female living in central NJ who recently was diagnosed with Stills. I would much appreciate any information you can share with me since this diagnosis has left me feeling down, confused, and in disbelief. Can anyone recommend any good rhematologists in NJ, PA or NY who have experience treating Stills patients? Has anyone had Lymes disesase prior to getting this disease? My theory is that Lymes eventually caused my immune system to become out of whack and cause this disease. Has anyone started with 4000 milligrams of aspririn a day to treat this? I started on it and started to feel pretty good and after a few weeks had stomach problems (nausea, vomiting and the fever returned). Now I'm on prednisone (15 mgs a day). I don't have any systemic problems (yet) and was hoping there was a treatment I could be on that's in between asprin and prednisone. Finally, does anyone experience general itching? This never seems to go away, neither do the rashes. Thanks, Eleanor Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2001 Report Share Posted November 4, 2001 Hi Eleanor! Welcome to the group! I live in Canada so unfortuneatley I'm not able to recommend a godd rheumologist (it is so important to find a good one). I didn't have Lyme disease before Stills but my little boy had chicken pox and my husband had shingles so that's how I think my system got out of whack! I DID start with lots of aspririn at first (20 pills every four hours). It seemed to help control the symptoms although my rash never disappeared and I felt " funny " all the time (because of the high dose of aspririn I developed tinitis and other complications). One thing that helped was when I switched to a coated aspririn. Are you taking a coated aspririn? I also took an anti ulcer drug at the same time to combat the side effects but I can't remember what that was - sorry! Hopefully though you will be able to get off the aspririn soon and onto something that is more effective with less side effects. I was left with the same feeling of being down, confused and in disbelief at first (I've only been diagnosed for two years) and those feelings still return BUT I am able to lead a fairly normal life (lots of rest) and my symptoms are controlled through methotrexate. I know others on the site are much worse off . .. . Hope this helps and if you need any other questions answered (or a place to vent), just type! Jen P. Also, I was wondering about the itching too - that's a fairly new symptom for me .. . . Hello Hi everyone. I'm new to the mailing list. I am a 36 year old female living in central NJ who recently was diagnosed with Stills. I would much appreciate any information you can share with me since this diagnosis has left me feeling down, confused, and in disbelief. Can anyone recommend any good rhematologists in NJ, PA or NY who have experience treating Stills patients? Has anyone had Lymes disesase prior to getting this disease? My theory is that Lymes eventually caused my immune system to become out of whack and cause this disease. Has anyone started with 4000 milligrams of aspririn a day to treat this? I started on it and started to feel pretty good and after a few weeks had stomach problems (nausea, vomiting and the fever returned). Now I'm on prednisone (15 mgs a day). I don't have any systemic problems (yet) and was hoping there was a treatment I could be on that's in between asprin and prednisone. Finally, does anyone experience general itching? This never seems to go away, neither do the rashes. Thanks, Eleanor Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2001 Report Share Posted November 4, 2001 Hi Eleanor! Welcome to the group! I live in Canada so unfortuneatley I'm not able to recommend a godd rheumologist (it is so important to find a good one). I didn't have Lyme disease before Stills but my little boy had chicken pox and my husband had shingles so that's how I think my system got out of whack! I DID start with lots of aspririn at first (20 pills every four hours). It seemed to help control the symptoms although my rash never disappeared and I felt " funny " all the time (because of the high dose of aspririn I developed tinitis and other complications). One thing that helped was when I switched to a coated aspririn. Are you taking a coated aspririn? I also took an anti ulcer drug at the same time to combat the side effects but I can't remember what that was - sorry! Hopefully though you will be able to get off the aspririn soon and onto something that is more effective with less side effects. I was left with the same feeling of being down, confused and in disbelief at first (I've only been diagnosed for two years) and those feelings still return BUT I am able to lead a fairly normal life (lots of rest) and my symptoms are controlled through methotrexate. I know others on the site are much worse off . .. . Hope this helps and if you need any other questions answered (or a place to vent), just type! Jen P. Also, I was wondering about the itching too - that's a fairly new symptom for me .. . . Hello Hi everyone. I'm new to the mailing list. I am a 36 year old female living in central NJ who recently was diagnosed with Stills. I would much appreciate any information you can share with me since this diagnosis has left me feeling down, confused, and in disbelief. Can anyone recommend any good rhematologists in NJ, PA or NY who have experience treating Stills patients? Has anyone had Lymes disesase prior to getting this disease? My theory is that Lymes eventually caused my immune system to become out of whack and cause this disease. Has anyone started with 4000 milligrams of aspririn a day to treat this? I started on it and started to feel pretty good and after a few weeks had stomach problems (nausea, vomiting and the fever returned). Now I'm on prednisone (15 mgs a day). I don't have any systemic problems (yet) and was hoping there was a treatment I could be on that's in between asprin and prednisone. Finally, does anyone experience general itching? This never seems to go away, neither do the rashes. Thanks, Eleanor Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html Quote Link to comment Share on other sites More sharing options...
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