Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 thank you for the clear explanation. Do persons with AOSD get MRSA more often than persons who are not afflicted with AOSD? What are the sypmtoms? Thank you. ResultsHello everyone,As it turns out. I do have MRSA. Still not overly concern as I was onMonday. The area seems to be getting better. Since monday I have beentaking 500mgs of Keflex 4 times daily. I guess it's a wait and seegame now. Talk to you all later __________________________________________________________Get more out of the Web. Learn 10 hidden secrets of Windows Live.http://windowslive.com/connect/post/jamiethomson.spaces.live.com-Blog-cns!5\ 50F681DAD532637!5295.entry?ocid=TXT_TAGLM_WL_domore_092008[Non-text portions of this message have been removed][Non-text portions of this message have been removed] _________________________________________________________________ See how Windows Mobile brings your life together-at home, work, or on the go. http://clk.atdmt.com/MRT/go/msnnkwxp1020093182mrt/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 thank you for the clear explanation. Do persons with AOSD get MRSA more often than persons who are not afflicted with AOSD? What are the sypmtoms? Thank you. ResultsHello everyone,As it turns out. I do have MRSA. Still not overly concern as I was onMonday. The area seems to be getting better. Since monday I have beentaking 500mgs of Keflex 4 times daily. I guess it's a wait and seegame now. Talk to you all later __________________________________________________________Get more out of the Web. Learn 10 hidden secrets of Windows Live.http://windowslive.com/connect/post/jamiethomson.spaces.live.com-Blog-cns!5\ 50F681DAD532637!5295.entry?ocid=TXT_TAGLM_WL_domore_092008[Non-text portions of this message have been removed][Non-text portions of this message have been removed] _________________________________________________________________ See how Windows Mobile brings your life together-at home, work, or on the go. http://clk.atdmt.com/MRT/go/msnnkwxp1020093182mrt/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 , People with Stills and on steroids and/or the biologic meds like embrel , remicade, humira,orencia would get sicker faster if they developed an infection due to MRSA. Whether they are more likely to contract if exposed to it is a good question and I am not sure of the answer. Harry S. To: Stillsdisease From: lrhorner@... Date: Fri, 24 Oct 2008 11:32:27 -0700 Subject: Re: Results thank you for the clear explanation. Do persons with AOSD get MRSA more often than persons who are not afflicted with AOSD? What are the sypmtoms? Thank you. ResultsHello everyone,As it turns out. I do have MRSA. Still not overly concern as I was onMonday. The area seems to be getting better. Since monday I have beentaking 500mgs of Keflex 4 times daily. I guess it's a wait and seegame now. Talk to you all later __________________________________________________________Get more out of the Web. Learn 10 hidden secrets of Windows Live.http://windowslive.com/connect/post/jamiethomson.spaces.live.com-Blog-cns!5\ 50F681DAD532637!5295.entry?ocid=TXT_TAGLM_WL_domore_092008[Non-text portions of this message have been removed][Non-text portions of this message have been removed] __________________________________________________________ See how Windows Mobile brings your life together-at home, work, or on the go. http://clk.atdmt.com/MRT/go/msnnkwxp1020093182mrt/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 , People with Stills and on steroids and/or the biologic meds like embrel , remicade, humira,orencia would get sicker faster if they developed an infection due to MRSA. Whether they are more likely to contract if exposed to it is a good question and I am not sure of the answer. Harry S. To: Stillsdisease From: lrhorner@... Date: Fri, 24 Oct 2008 11:32:27 -0700 Subject: Re: Results thank you for the clear explanation. Do persons with AOSD get MRSA more often than persons who are not afflicted with AOSD? What are the sypmtoms? Thank you. ResultsHello everyone,As it turns out. I do have MRSA. Still not overly concern as I was onMonday. The area seems to be getting better. Since monday I have beentaking 500mgs of Keflex 4 times daily. I guess it's a wait and seegame now. Talk to you all later __________________________________________________________Get more out of the Web. Learn 10 hidden secrets of Windows Live.http://windowslive.com/connect/post/jamiethomson.spaces.live.com-Blog-cns!5\ 50F681DAD532637!5295.entry?ocid=TXT_TAGLM_WL_domore_092008[Non-text portions of this message have been removed][Non-text portions of this message have been removed] __________________________________________________________ See how Windows Mobile brings your life together-at home, work, or on the go. http://clk.atdmt.com/MRT/go/msnnkwxp1020093182mrt/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Harry, thank you so much. My son (just diagnosed last week with AOSD and is 32 years old) was on prednisone but the new Dr put him on hydroxychloroquine. As a family, we're not sure if he has AOSD as the rash he had was very painful and extremely itchy...nobody else seems to have an itch with their rash. Also, it is now under control with cortisone. They are seeing their old Dr on Monday for more information ResultsHello everyone,As it turns out. I do have MRSA. Still not overly concern as I was onMonday. The area seems to be getting better. Since monday I have beentaking 500mgs of Keflex 4 times daily. I guess it's a wait and seegame now. Talk to you all later __________________________________________________________Get more out of the Web. Learn 10 hidden secrets of Windows Live.http://windowslive.com/connect/post/jamiethomson.spaces.live.com-Blog-cns!5\ 50F681DAD532637!5295.entry?ocid=TXT_TAGLM_WL_domore_092008[Non-text portions of this message have been removed][Non-text portions of this message have been removed] __________________________________________________________ See how Windows Mobile brings your life together-at home, work, or on the go. http://clk.atdmt.com/MRT/go/msnnkwxp1020093182mrt/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Harry, thank you so much. My son (just diagnosed last week with AOSD and is 32 years old) was on prednisone but the new Dr put him on hydroxychloroquine. As a family, we're not sure if he has AOSD as the rash he had was very painful and extremely itchy...nobody else seems to have an itch with their rash. Also, it is now under control with cortisone. They are seeing their old Dr on Monday for more information ResultsHello everyone,As it turns out. I do have MRSA. Still not overly concern as I was onMonday. The area seems to be getting better. Since monday I have beentaking 500mgs of Keflex 4 times daily. I guess it's a wait and seegame now. Talk to you all later __________________________________________________________Get more out of the Web. Learn 10 hidden secrets of Windows Live.http://windowslive.com/connect/post/jamiethomson.spaces.live.com-Blog-cns!5\ 50F681DAD532637!5295.entry?ocid=TXT_TAGLM_WL_domore_092008[Non-text portions of this message have been removed][Non-text portions of this message have been removed] __________________________________________________________ See how Windows Mobile brings your life together-at home, work, or on the go. http://clk.atdmt.com/MRT/go/msnnkwxp1020093182mrt/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Harry, thank you so much. My son (just diagnosed last week with AOSD and is 32 years old) was on prednisone but the new Dr put him on hydroxychloroquine. As a family, we're not sure if he has AOSD as the rash he had was very painful and extremely itchy...nobody else seems to have an itch with their rash. Also, it is now under control with cortisone. They are seeing their old Dr on Monday for more information ResultsHello everyone,As it turns out. I do have MRSA. Still not overly concern as I was onMonday. The area seems to be getting better. Since monday I have beentaking 500mgs of Keflex 4 times daily. I guess it's a wait and seegame now. Talk to you all later __________________________________________________________Get more out of the Web. Learn 10 hidden secrets of Windows Live.http://windowslive.com/connect/post/jamiethomson.spaces.live.com-Blog-cns!5\ 50F681DAD532637!5295.entry?ocid=TXT_TAGLM_WL_domore_092008[Non-text portions of this message have been removed][Non-text portions of this message have been removed] __________________________________________________________ See how Windows Mobile brings your life together-at home, work, or on the go. http://clk.atdmt.com/MRT/go/msnnkwxp1020093182mrt/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008  hi I have only read a few glimpses about your son . he is a bit younger then I was when I was dx so I have an idea about how he must feel. I can tell you at fist it was you have this no now it is that and so one then Stanford medical center dx me with Stills and over the years there are still some docs that say no you do not have that or whats that some thing you made up. I get it all any hoot about the rash . mine never was dark or looked much like the pictures of them you see but talk abut itch o man drove me nuts and still dose to this day. fact is mine is still hard to see but you can draw it out by fallowing the itch .. it is across my upper back and shoulders and also the small of the back . across my upper chest and then my bridge of the nose . It will itch so bad at times that I scratch it so much I end up scratching my self so hard I cut the skin at times . my wife swears I want her to scratch my skin off my back as she says it turns red and to be honest she never scrates hard enough for me . I am like an old bear at times using the corner of a wall inside or out side dose not matter . I have used a tree even and that did cut my back open some . so yup it drives me nuts so he is not alone. now the crazy thing is Vick's vapor rub smeared on it will help stop the itch for a bit and so dose taking a benadril but that what i do and with the okay of my doctors.  tell him good luck and no matter how bad it may feel when the good days hit ya it makes them really good better then any good day before because now you really know how to enjoy them hugs and our best  the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58   Stills ; An illness I know to well! To learn about Stills  http://www.stillsdisease.org/stills_info If you find yourself in a hole, the first thing to do is stop diggin'.  In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown  " Taking my gun away because I might shoot someone is like cutting my tongue out because I might yell `Fire!' in a crowded theater. " -- Venetoklis  a government and its agents are under no general duty to provide public services, such as police protection, to any particular individual citizen... -- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008  hi I have only read a few glimpses about your son . he is a bit younger then I was when I was dx so I have an idea about how he must feel. I can tell you at fist it was you have this no now it is that and so one then Stanford medical center dx me with Stills and over the years there are still some docs that say no you do not have that or whats that some thing you made up. I get it all any hoot about the rash . mine never was dark or looked much like the pictures of them you see but talk abut itch o man drove me nuts and still dose to this day. fact is mine is still hard to see but you can draw it out by fallowing the itch .. it is across my upper back and shoulders and also the small of the back . across my upper chest and then my bridge of the nose . It will itch so bad at times that I scratch it so much I end up scratching my self so hard I cut the skin at times . my wife swears I want her to scratch my skin off my back as she says it turns red and to be honest she never scrates hard enough for me . I am like an old bear at times using the corner of a wall inside or out side dose not matter . I have used a tree even and that did cut my back open some . so yup it drives me nuts so he is not alone. now the crazy thing is Vick's vapor rub smeared on it will help stop the itch for a bit and so dose taking a benadril but that what i do and with the okay of my doctors.  tell him good luck and no matter how bad it may feel when the good days hit ya it makes them really good better then any good day before because now you really know how to enjoy them hugs and our best  the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58   Stills ; An illness I know to well! To learn about Stills  http://www.stillsdisease.org/stills_info If you find yourself in a hole, the first thing to do is stop diggin'.  In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown  " Taking my gun away because I might shoot someone is like cutting my tongue out because I might yell `Fire!' in a crowded theater. " -- Venetoklis  a government and its agents are under no general duty to provide public services, such as police protection, to any particular individual citizen... -- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008  hi I have only read a few glimpses about your son . he is a bit younger then I was when I was dx so I have an idea about how he must feel. I can tell you at fist it was you have this no now it is that and so one then Stanford medical center dx me with Stills and over the years there are still some docs that say no you do not have that or whats that some thing you made up. I get it all any hoot about the rash . mine never was dark or looked much like the pictures of them you see but talk abut itch o man drove me nuts and still dose to this day. fact is mine is still hard to see but you can draw it out by fallowing the itch .. it is across my upper back and shoulders and also the small of the back . across my upper chest and then my bridge of the nose . It will itch so bad at times that I scratch it so much I end up scratching my self so hard I cut the skin at times . my wife swears I want her to scratch my skin off my back as she says it turns red and to be honest she never scrates hard enough for me . I am like an old bear at times using the corner of a wall inside or out side dose not matter . I have used a tree even and that did cut my back open some . so yup it drives me nuts so he is not alone. now the crazy thing is Vick's vapor rub smeared on it will help stop the itch for a bit and so dose taking a benadril but that what i do and with the okay of my doctors.  tell him good luck and no matter how bad it may feel when the good days hit ya it makes them really good better then any good day before because now you really know how to enjoy them hugs and our best  the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58   Stills ; An illness I know to well! To learn about Stills  http://www.stillsdisease.org/stills_info If you find yourself in a hole, the first thing to do is stop diggin'.  In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown  " Taking my gun away because I might shoot someone is like cutting my tongue out because I might yell `Fire!' in a crowded theater. " -- Venetoklis  a government and its agents are under no general duty to provide public services, such as police protection, to any particular individual citizen... -- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Hi These diagnosis are tricky. The 5 minute rheumy visit with a diagnosis of AOSD does not make tons of sense, but I am not a doctor and I don't have all the facts. AOSD is rare. I know you will be going through talking to many doctors and people and different ideas or diagnosis will be suspected. I hope what ever they tell you , you use this support group cause it is very helpful. A positive ANA can be found in several rheumatological diseases. Some STills patients have it, I have a mini one, but....I think it is usually negative in this disease. Sometimes these wretched diseases evolve and it takes time for the doctor to give a definitive diagnosis. Listen to them, write to us ..even if its 3 times a day. You now have friends here who have a huge clue what you are going thru. That, is not a small gift. Looking for your posts Liz NJ **************Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out! (http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir= http://www.games.com?ncid=emlcntusgame00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Hi These diagnosis are tricky. The 5 minute rheumy visit with a diagnosis of AOSD does not make tons of sense, but I am not a doctor and I don't have all the facts. AOSD is rare. I know you will be going through talking to many doctors and people and different ideas or diagnosis will be suspected. I hope what ever they tell you , you use this support group cause it is very helpful. A positive ANA can be found in several rheumatological diseases. Some STills patients have it, I have a mini one, but....I think it is usually negative in this disease. Sometimes these wretched diseases evolve and it takes time for the doctor to give a definitive diagnosis. Listen to them, write to us ..even if its 3 times a day. You now have friends here who have a huge clue what you are going thru. That, is not a small gift. Looking for your posts Liz NJ **************Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out! (http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir= http://www.games.com?ncid=emlcntusgame00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Hi These diagnosis are tricky. The 5 minute rheumy visit with a diagnosis of AOSD does not make tons of sense, but I am not a doctor and I don't have all the facts. AOSD is rare. I know you will be going through talking to many doctors and people and different ideas or diagnosis will be suspected. I hope what ever they tell you , you use this support group cause it is very helpful. A positive ANA can be found in several rheumatological diseases. Some STills patients have it, I have a mini one, but....I think it is usually negative in this disease. Sometimes these wretched diseases evolve and it takes time for the doctor to give a definitive diagnosis. Listen to them, write to us ..even if its 3 times a day. You now have friends here who have a huge clue what you are going thru. That, is not a small gift. Looking for your posts Liz NJ **************Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out! (http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir= http://www.games.com?ncid=emlcntusgame00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Hugs and more hugs ... really...I am here for you where do you guys live?? have to run...will be back in a couple of hours...Oh and yes you can pass on my post! Liz NJ **************Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out! (http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir= http://www.games.com?ncid=emlcntusgame00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Hugs and more hugs ... really...I am here for you where do you guys live?? have to run...will be back in a couple of hours...Oh and yes you can pass on my post! Liz NJ **************Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out! (http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir= http://www.games.com?ncid=emlcntusgame00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Hi Marty Thanks so much for this. If it is ok with you, I am going to forward this information to Cath (Mike's wife) so they will know there are other AOSD people who have experienced an itchy rash. Is yours painful as well? DId cortisone creme help? Is cortisone a dangerous med for AOSD people to take??? Nobody seems to talk about it so I was just wondering. Mike is on prednisone but the new rhuemy is weaning him off of that drug and putting him on something called hydroxychloroquine. Cath has a main question and that is this: What is it specifically that differentiates AOSD from something like lupus? Or other auto-immune conditions... she and Mike are so shocked that they saw the rhuemy for a total of 5 minutes and were told Mike doesn't have lupus but has AOSD. And then the Dr ordered more blood tests...Mike has got to go back and see him in 5 weeks...and wasn't told much about AOSD. We are finding out ourselves and trying the best we can as a family, to give support etc Thanks again Re: Results hi I have only read a few glimpses about your son . he is a bit younger then I was when I was dx so I have an idea about how he must feel. I can tell you at fist it was you have this no now it is that and so one then Stanford medical center dx me with Stills and over the years there are still some docs that say no you do not have that or whats that some thing you made up. I get it all any hoot about the rash . mine never was dark or looked much like the pictures of them you see but talk abut itch o man drove me nuts and still dose to this day. fact is mine is still hard to see but you can draw it out by fallowing the itch .. it is across my upper back and shoulders and also the small of the back . across my upper chest and then my bridge of the nose . It will itch so bad at times that I scratch it so much I end up scratching my self so hard I cut the skin at times . my wife swears I want her to scratch my skin off my back as she says it turns red and to be honest she never scrates hard enough for me . I am like an old bear at times using the corner of a wall inside or out side dose not matter . I have used a tree even and that did cut my back open some . so yup it drives me nuts so he is not alone. now the crazy thing is Vick's vapor rub smeared on it will help stop the itch for a bit and so dose taking a benadril but that what i do and with the okay of my doctors. tell him good luck and no matter how bad it may feel when the good days hit ya it makes them really good better then any good day before because now you really know how to enjoy them hugs and our best the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58 Stills ; An illness I know to well! To learn about Stills http://www.stillsdisease.org/stills_info If you find yourself in a hole, the first thing to do is stop diggin'. In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown " Taking my gun away because I might shoot someone is like cutting my tongue out because I might yell `Fire!' in a crowded theater. " -- Venetoklis a government and its agents are under no general duty to provide public services, such as police protection, to any particular individual citizen... -- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Hi Marty Thanks so much for this. If it is ok with you, I am going to forward this information to Cath (Mike's wife) so they will know there are other AOSD people who have experienced an itchy rash. Is yours painful as well? DId cortisone creme help? Is cortisone a dangerous med for AOSD people to take??? Nobody seems to talk about it so I was just wondering. Mike is on prednisone but the new rhuemy is weaning him off of that drug and putting him on something called hydroxychloroquine. Cath has a main question and that is this: What is it specifically that differentiates AOSD from something like lupus? Or other auto-immune conditions... she and Mike are so shocked that they saw the rhuemy for a total of 5 minutes and were told Mike doesn't have lupus but has AOSD. And then the Dr ordered more blood tests...Mike has got to go back and see him in 5 weeks...and wasn't told much about AOSD. We are finding out ourselves and trying the best we can as a family, to give support etc Thanks again Re: Results hi I have only read a few glimpses about your son . he is a bit younger then I was when I was dx so I have an idea about how he must feel. I can tell you at fist it was you have this no now it is that and so one then Stanford medical center dx me with Stills and over the years there are still some docs that say no you do not have that or whats that some thing you made up. I get it all any hoot about the rash . mine never was dark or looked much like the pictures of them you see but talk abut itch o man drove me nuts and still dose to this day. fact is mine is still hard to see but you can draw it out by fallowing the itch .. it is across my upper back and shoulders and also the small of the back . across my upper chest and then my bridge of the nose . It will itch so bad at times that I scratch it so much I end up scratching my self so hard I cut the skin at times . my wife swears I want her to scratch my skin off my back as she says it turns red and to be honest she never scrates hard enough for me . I am like an old bear at times using the corner of a wall inside or out side dose not matter . I have used a tree even and that did cut my back open some . so yup it drives me nuts so he is not alone. now the crazy thing is Vick's vapor rub smeared on it will help stop the itch for a bit and so dose taking a benadril but that what i do and with the okay of my doctors. tell him good luck and no matter how bad it may feel when the good days hit ya it makes them really good better then any good day before because now you really know how to enjoy them hugs and our best the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58 Stills ; An illness I know to well! To learn about Stills http://www.stillsdisease.org/stills_info If you find yourself in a hole, the first thing to do is stop diggin'. In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown " Taking my gun away because I might shoot someone is like cutting my tongue out because I might yell `Fire!' in a crowded theater. " -- Venetoklis a government and its agents are under no general duty to provide public services, such as police protection, to any particular individual citizen... -- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Hi Marty Thanks so much for this. If it is ok with you, I am going to forward this information to Cath (Mike's wife) so they will know there are other AOSD people who have experienced an itchy rash. Is yours painful as well? DId cortisone creme help? Is cortisone a dangerous med for AOSD people to take??? Nobody seems to talk about it so I was just wondering. Mike is on prednisone but the new rhuemy is weaning him off of that drug and putting him on something called hydroxychloroquine. Cath has a main question and that is this: What is it specifically that differentiates AOSD from something like lupus? Or other auto-immune conditions... she and Mike are so shocked that they saw the rhuemy for a total of 5 minutes and were told Mike doesn't have lupus but has AOSD. And then the Dr ordered more blood tests...Mike has got to go back and see him in 5 weeks...and wasn't told much about AOSD. We are finding out ourselves and trying the best we can as a family, to give support etc Thanks again Re: Results hi I have only read a few glimpses about your son . he is a bit younger then I was when I was dx so I have an idea about how he must feel. I can tell you at fist it was you have this no now it is that and so one then Stanford medical center dx me with Stills and over the years there are still some docs that say no you do not have that or whats that some thing you made up. I get it all any hoot about the rash . mine never was dark or looked much like the pictures of them you see but talk abut itch o man drove me nuts and still dose to this day. fact is mine is still hard to see but you can draw it out by fallowing the itch .. it is across my upper back and shoulders and also the small of the back . across my upper chest and then my bridge of the nose . It will itch so bad at times that I scratch it so much I end up scratching my self so hard I cut the skin at times . my wife swears I want her to scratch my skin off my back as she says it turns red and to be honest she never scrates hard enough for me . I am like an old bear at times using the corner of a wall inside or out side dose not matter . I have used a tree even and that did cut my back open some . so yup it drives me nuts so he is not alone. now the crazy thing is Vick's vapor rub smeared on it will help stop the itch for a bit and so dose taking a benadril but that what i do and with the okay of my doctors. tell him good luck and no matter how bad it may feel when the good days hit ya it makes them really good better then any good day before because now you really know how to enjoy them hugs and our best the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58 Stills ; An illness I know to well! To learn about Stills http://www.stillsdisease.org/stills_info If you find yourself in a hole, the first thing to do is stop diggin'. In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown " Taking my gun away because I might shoot someone is like cutting my tongue out because I might yell `Fire!' in a crowded theater. " -- Venetoklis a government and its agents are under no general duty to provide public services, such as police protection, to any particular individual citizen... -- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Hi Liz thank you for your kindness. I'm crying right now as I am recalling when Mike was very young...he was such a monkey...always getting himself into scrapes and pushing his boundaries you might say (when he was 6 for example...riding his bike into a deep ditch that had water in it when I had just told him to make sure he didn't take his bike on the side of the street that had the ditch). On a few occaisions I had to give him a spanking on his little bum. Now, thinking of how much pain he is in and remebering that I spanked him at all just breaks my heart. I know it sounds crazy...but I'm just remebering how innocent and lovely this young man was as a child...and today he is so hard working that he refuses to acknowledge his pain and fights through the day, working hard and not saying anything...just to come home and totally collapse. If it's ok with you, I'm going to pass on your note to Cath as she is gathering as much information as possible. On Monday they go and see the specialist they were dealing with before they got sent to the rheumy Dr. They have a lot of questions they needs some answers to and I'm hoping some of the information I can give to her will help formulate their questions.... Thanks again. I've stopped crying. For some reason, when folks like you show empathy...it makes me cry. Tears are funny aren't they? Re: Results Hi These diagnosis are tricky. The 5 minute rheumy visit with a diagnosis of AOSD does not make tons of sense, but I am not a doctor and I don't have all the facts. AOSD is rare. I know you will be going through talking to many doctors and people and different ideas or diagnosis will be suspected. I hope what ever they tell you , you use this support group cause it is very helpful. A positive ANA can be found in several rheumatological diseases. Some STills patients have it, I have a mini one, but....I think it is usually negative in this disease. Sometimes these wretched diseases evolve and it takes time for the doctor to give a definitive diagnosis. Listen to them, write to us ..even if its 3 times a day. You now have friends here who have a huge clue what you are going thru. That, is not a small gift. Looking for your posts Liz NJ **************Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out! (http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir= http://www.games.com?ncid=emlcntusgame00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 I live in , BC, Canada and my son and his wife live on the mainland ( a 2 hour ferry ride away) just outside of Vancouver in a place called " Port Moody " Thank you for your support... Re: Results Hugs and more hugs ... really...I am here for you where do you guys live?? have to run...will be back in a couple of hours...Oh and yes you can pass on my post! Liz NJ **************Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out! (http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir= http://www.games.com?ncid=emlcntusgame00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 I live in , BC, Canada and my son and his wife live on the mainland ( a 2 hour ferry ride away) just outside of Vancouver in a place called " Port Moody " Thank you for your support... Re: Results Hugs and more hugs ... really...I am here for you where do you guys live?? have to run...will be back in a couple of hours...Oh and yes you can pass on my post! Liz NJ **************Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out! (http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir= http://www.games.com?ncid=emlcntusgame00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008  My rash has never hurt and I have never been given any thing for it so I can not comment on the cortisone cream. the lupus and stills deference's are a bit confusing but note worthy but again I am not one to speak on it but in this one area Lupus can be tested for with a blood test and stills can not. Now stills has some things that can be markers in a blood test such as in my case a high fereton iron count. some it is a sed rate but there is no test to say stills yes or not . for my self I do not deal to much on the medical side of this .why I do not know because I have had some really bad problems with some medacian reactions . for me it has been the mental aspects that have given me the hardest time and also changed my life the most both good as in late and bad as in the start and in some drastic life changes I never thought i would have to deal with such as a divorce that was nasty and came about because of stills. any hoot I have just dealt with it on a day by day baseses. I at first wanted a cure and remission and it did take me a few years to stop that thought proses. Now that is not to say I would not enjoy either one if given the chance because i would let me tell you. It just means I have adjusted to living with this stills thing. I did get to enjoy a remission and did not even know I was in one tell later when it was over and things started to get bad again. during that time I was not using any medications at all. I did have a bit of pain during that time but I also did not have any medical coverage during then also so it also came at a good time for my self financially. Now days I am back on some medications but there few and not the really hard core ones being both my doctors and my self want to keep things down to the fewest and lightest we can get away with . Now some times this means I have to deal with a bit more then I like but it normally is only a few days . I do this because again at the start I was on so many and the predasion with a few of them messed me up both mentally and physically. I also had some other side effects from all the medications and the mix because they kept adding more and never did take any away now days we try and if not working we adjust or remove and try a different rout and for my self it works . the biggest thing is how you look at it mentally and how you adjust you life with stills meaning resting times and not over doing things even when you feel you can. but yes pass any and all along and try to also get them to join here also as sharing personally here for 8 years now I can say has saved me a few times and helped me deal with stills and life with it a lot because every time I felt alone in going threw something when I posted I always seamed to find out some one had already been there or was there now and that helped a lot knowing that so all my best and it is support like you that has helped me because if it was not for my own mother all along in my life with stills I do not know where or what I would have done she has been my angle and my friend in all of this and I know I can never tell her thank you or pay her for all she has dome for me even if I lived to be a 150.   the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58   Stills ; An illness I know to well! To learn about Stills  http://www.stillsdisease.org/stills_info If you find yourself in a hole, the first thing to do is stop diggin'.  In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown  " Taking my gun away because I might shoot someone is like cutting my tongue out because I might yell `Fire!' in a crowded theater. " -- Venetoklis  a government and its agents are under no general duty to provide public services, such as police protection, to any particular individual citizen... -- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008  My rash has never hurt and I have never been given any thing for it so I can not comment on the cortisone cream. the lupus and stills deference's are a bit confusing but note worthy but again I am not one to speak on it but in this one area Lupus can be tested for with a blood test and stills can not. Now stills has some things that can be markers in a blood test such as in my case a high fereton iron count. some it is a sed rate but there is no test to say stills yes or not . for my self I do not deal to much on the medical side of this .why I do not know because I have had some really bad problems with some medacian reactions . for me it has been the mental aspects that have given me the hardest time and also changed my life the most both good as in late and bad as in the start and in some drastic life changes I never thought i would have to deal with such as a divorce that was nasty and came about because of stills. any hoot I have just dealt with it on a day by day baseses. I at first wanted a cure and remission and it did take me a few years to stop that thought proses. Now that is not to say I would not enjoy either one if given the chance because i would let me tell you. It just means I have adjusted to living with this stills thing. I did get to enjoy a remission and did not even know I was in one tell later when it was over and things started to get bad again. during that time I was not using any medications at all. I did have a bit of pain during that time but I also did not have any medical coverage during then also so it also came at a good time for my self financially. Now days I am back on some medications but there few and not the really hard core ones being both my doctors and my self want to keep things down to the fewest and lightest we can get away with . Now some times this means I have to deal with a bit more then I like but it normally is only a few days . I do this because again at the start I was on so many and the predasion with a few of them messed me up both mentally and physically. I also had some other side effects from all the medications and the mix because they kept adding more and never did take any away now days we try and if not working we adjust or remove and try a different rout and for my self it works . the biggest thing is how you look at it mentally and how you adjust you life with stills meaning resting times and not over doing things even when you feel you can. but yes pass any and all along and try to also get them to join here also as sharing personally here for 8 years now I can say has saved me a few times and helped me deal with stills and life with it a lot because every time I felt alone in going threw something when I posted I always seamed to find out some one had already been there or was there now and that helped a lot knowing that so all my best and it is support like you that has helped me because if it was not for my own mother all along in my life with stills I do not know where or what I would have done she has been my angle and my friend in all of this and I know I can never tell her thank you or pay her for all she has dome for me even if I lived to be a 150.   the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58   Stills ; An illness I know to well! To learn about Stills  http://www.stillsdisease.org/stills_info If you find yourself in a hole, the first thing to do is stop diggin'.  In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown  " Taking my gun away because I might shoot someone is like cutting my tongue out because I might yell `Fire!' in a crowded theater. " -- Venetoklis  a government and its agents are under no general duty to provide public services, such as police protection, to any particular individual citizen... -- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008  My rash has never hurt and I have never been given any thing for it so I can not comment on the cortisone cream. the lupus and stills deference's are a bit confusing but note worthy but again I am not one to speak on it but in this one area Lupus can be tested for with a blood test and stills can not. Now stills has some things that can be markers in a blood test such as in my case a high fereton iron count. some it is a sed rate but there is no test to say stills yes or not . for my self I do not deal to much on the medical side of this .why I do not know because I have had some really bad problems with some medacian reactions . for me it has been the mental aspects that have given me the hardest time and also changed my life the most both good as in late and bad as in the start and in some drastic life changes I never thought i would have to deal with such as a divorce that was nasty and came about because of stills. any hoot I have just dealt with it on a day by day baseses. I at first wanted a cure and remission and it did take me a few years to stop that thought proses. Now that is not to say I would not enjoy either one if given the chance because i would let me tell you. It just means I have adjusted to living with this stills thing. I did get to enjoy a remission and did not even know I was in one tell later when it was over and things started to get bad again. during that time I was not using any medications at all. I did have a bit of pain during that time but I also did not have any medical coverage during then also so it also came at a good time for my self financially. Now days I am back on some medications but there few and not the really hard core ones being both my doctors and my self want to keep things down to the fewest and lightest we can get away with . Now some times this means I have to deal with a bit more then I like but it normally is only a few days . I do this because again at the start I was on so many and the predasion with a few of them messed me up both mentally and physically. I also had some other side effects from all the medications and the mix because they kept adding more and never did take any away now days we try and if not working we adjust or remove and try a different rout and for my self it works . the biggest thing is how you look at it mentally and how you adjust you life with stills meaning resting times and not over doing things even when you feel you can. but yes pass any and all along and try to also get them to join here also as sharing personally here for 8 years now I can say has saved me a few times and helped me deal with stills and life with it a lot because every time I felt alone in going threw something when I posted I always seamed to find out some one had already been there or was there now and that helped a lot knowing that so all my best and it is support like you that has helped me because if it was not for my own mother all along in my life with stills I do not know where or what I would have done she has been my angle and my friend in all of this and I know I can never tell her thank you or pay her for all she has dome for me even if I lived to be a 150.   the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58   Stills ; An illness I know to well! To learn about Stills  http://www.stillsdisease.org/stills_info If you find yourself in a hole, the first thing to do is stop diggin'.  In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown  " Taking my gun away because I might shoot someone is like cutting my tongue out because I might yell `Fire!' in a crowded theater. " -- Venetoklis  a government and its agents are under no general duty to provide public services, such as police protection, to any particular individual citizen... -- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2008 Report Share Posted October 27, 2008 Harry, My experience on staph in general is that yes, I am more likely to get it (i am on kineret, arava, plaquenil). I've had 3 surgeries in the last year and contacted staph twice. (original message left intact below for reference) > , > People with Stills and on steroids and/or the biologic meds like embrel , remicade, humira,orencia would get sicker faster if they developed an infection due to MRSA. Whether they are more likely to contract if exposed to it is a good question and I am not sure of the answer. > Harry S. Quote Link to comment Share on other sites More sharing options...
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