Guest guest Posted November 21, 2006 Report Share Posted November 21, 2006 Before AVS is done, if needed, be sure your ins will pay for it. One of our members was billed $27,000 (maybe more $36,000 but I cant recall exact numberfor it by U of Mich. In a message dated 10/26/06 3:57:13 AM, gemchip67@... writes: Hi Dr. Grim,                   Thanks for the name again this time i won't loose it . I have been on those meds for 2 years, no adjustments ever, the only thing changed was thyroid replacement synthroid went up to .175mcg, My thyroid came out in 2005 from a large nodual, that is the time my endo also found the PA. Thanks for this group and for caring. Pam lowerbp2@... wrote: In a message dated 10/26/06 12:09:31 AM, gemchip67@... a messag I am still on 80 of Potassium, 50 of spiro and a couple of blood pressure meds, guess i don't want to believe that this is as good as my life can be right now. I would appreciate the doctor's name at Baylor again dr.Grim,  Still hanging on to hope , racing heart in texas. Pam I recommended Dr. at Baylor. 50 of spiro is a drop in the bucket if your K is still low. I go up to 400 a day till things get better. You should not require that much K if you are on enough spiro and are DASHing.  Have you ever been on higer doses of Spiro? May your pressure be low! Clarence E. Grim, B.S., M.S., M.D. Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. May your pressure be low! Clarence E. Grim, B.S., M.S., M.D. Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2006 Report Share Posted December 28, 2006 My son (5)( ocd) is awful with pain. He can stub his toe and you'd think he was dying. On the other hand my daughter (10) ocd and bipolar is the opposite. She once broke her finger and we never knew it until a week later. She also had bacterial pneumunia, and the doctor said she wasn't acting sick enough to have it. Her lung almost collapsed it was so bad,and she had to be hospitalized for 5 days. Maybe it's the bipolar that makes her that way. Hugs Judy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2006 Report Share Posted December 28, 2006 My son (5)( ocd) is awful with pain. He can stub his toe and you'd think he was dying. On the other hand my daughter (10) ocd and bipolar is the opposite. She once broke her finger and we never knew it until a week later. She also had bacterial pneumunia, and the doctor said she wasn't acting sick enough to have it. Her lung almost collapsed it was so bad,and she had to be hospitalized for 5 days. Maybe it's the bipolar that makes her that way. Hugs Judy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2006 Report Share Posted December 28, 2006 mine is like your ds. so dramatic. sharon Re: meds My son (5)( ocd) is awful with pain. He can stub his toe and you'd think he was dying. On the other hand my daughter (10) ocd and bipolar is the opposite. She once broke her finger and we never knew it until a week later. She also had bacterial pneumunia, and the doctor said she wasn't acting sick enough to have it. Her lung almost collapsed it was so bad,and she had to be hospitalized for 5 days. Maybe it's the bipolar that makes her that way. Hugs Judy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2006 Report Share Posted December 28, 2006 I find the opposite here -she won't say a word about pain etc. -until we're at a check-up etc and then tells stuff to doc so I look like clueless out of touch mom -gotta love it!LOL!!!! eileen Quoting sher <ms4k@...>: > Yes, Adele, it is a lower pain threshold!! You said exactly what I > have been thinking! My other 3 kids hardly peep when they are getting > sick, but my oldest can have a sore throat and act like it's only a > matter of time before she leaves this earth. So it makes sense that > milder headaches would register as devastating to her. > I wonder, is this something that could be considered part of > a " profile " of a child with OCD? In other words, is having a lower > pain threshold typical of a kid with OCD? sher > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2007 Report Share Posted June 19, 2007 They were put into the fridge. as soon as they arrived. Also, Ribavirin instructions say keep out of light in cool place. They are there. We are ready and waiting. Annnnnnnnnnnd nervous as heck. Hugs Motley wrote: Put your shots in the fridge. /De -----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ] On Behalf Of onelildeltagirlSent: Tuesday, June 19, 2007 1:19 PMTo: HepatitisCSupportGroupForDummies Subject: Meds My meds arrived this am. Next Saturday before noon I will receive instructions on how to. Thennnnnnnnnnnnnnnnn, I'm good to go the following Tuesday night. Have already scheduled apt. for bloodwork and my next dr's apt. Hugs to all Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2007 Report Share Posted June 19, 2007 Shirley!!! Motley wrote: Put your shots in the fridge. /De -----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ] On Behalf Of onelildeltagirlSent: Tuesday, June 19, 2007 1:19 PMTo: HepatitisCSupportGroupForDummies Subject: Meds My meds arrived this am. Next Saturday before noon I will receive instructions on how to. Thennnnnnnnnnnnnnnnn, I'm good to go the following Tuesday night. Have already scheduled apt. for bloodwork and my next dr's apt. Hugs to all Tim Parsons knoxville,tn 37931 x107 work www.knoxville1.com Don't get soaked. Take a quick peak at the forecast with theYahoo! Search weather shortcut. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Ok, Gail. I will. I'll have to dig out my heating pad, or buy another one. Thank you for the heads up on that. We will probably be in Aberdeen when I take the first shot. So, I'll try to remember to take another blanket with me. Hugsgail wrote: I just kept my riboveron in the medicine chest.It is better if you take your shots close to bedtime so that you will sleep through the sides.With the first shot only have a warm blanket,heating pad or hot water bottle ready cause you will get severe chills.I felt like someone put me inside the fridge.It only happens with the first shot.Stay with us so we can help you as much as possible. Gail -----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ]On Behalf Of Vickie GraySent: June 19, 2007 7:27 PMTo: HepatitisCSupportGroupForDummies Subject: RE: MedsThey were put into the fridge. as soon as they arrived. Also, Ribavirin instructions say keep out of light in cool place. They are there. We are ready and waiting. Annnnnnnnnnnd nervous as heck. Hugs Motley <dmotleybellsouth (DOT) net> wrote: Put your shots in the fridge. /De -----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ] On Behalf Of onelildeltagirlSent: Tuesday, June 19, 2007 1:19 PMTo: HepatitisCSupportGroupForDummies Subject: Meds My meds arrived this am. Next Saturday before noon I will receive instructions on how to. Thennnnnnnnnnnnnnnnn, I'm good to go the following Tuesday night. Have already scheduled apt. for bloodwork and my next dr's apt. Hugs to all Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. Be a better Heartthrob. Get better relationship answers from someone who knows.Yahoo! Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Ok, Gail. I will. I'll have to dig out my heating pad, or buy another one. Thank you for the heads up on that. We will probably be in Aberdeen when I take the first shot. So, I'll try to remember to take another blanket with me. Hugsgail wrote: I just kept my riboveron in the medicine chest.It is better if you take your shots close to bedtime so that you will sleep through the sides.With the first shot only have a warm blanket,heating pad or hot water bottle ready cause you will get severe chills.I felt like someone put me inside the fridge.It only happens with the first shot.Stay with us so we can help you as much as possible. Gail -----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ]On Behalf Of Vickie GraySent: June 19, 2007 7:27 PMTo: HepatitisCSupportGroupForDummies Subject: RE: MedsThey were put into the fridge. as soon as they arrived. Also, Ribavirin instructions say keep out of light in cool place. They are there. We are ready and waiting. Annnnnnnnnnnd nervous as heck. Hugs Motley <dmotleybellsouth (DOT) net> wrote: Put your shots in the fridge. /De -----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ] On Behalf Of onelildeltagirlSent: Tuesday, June 19, 2007 1:19 PMTo: HepatitisCSupportGroupForDummies Subject: Meds My meds arrived this am. Next Saturday before noon I will receive instructions on how to. Thennnnnnnnnnnnnnnnn, I'm good to go the following Tuesday night. Have already scheduled apt. for bloodwork and my next dr's apt. Hugs to all Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. Be a better Heartthrob. Get better relationship answers from someone who knows.Yahoo! Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 I just kept my riboveron in the medicine chest.It is better if you take your shots close to bedtime so that you will sleep through the sides.With the first shot only have a warm blanket,heating pad or hot water bottle ready cause you will get severe chills.I felt like someone put me inside the fridge.It only happens with the first shot.Stay with us so we can help you as much as possible. Gail -----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ]On Behalf Of Vickie GraySent: June 19, 2007 7:27 PMTo: HepatitisCSupportGroupForDummies Subject: RE: MedsThey were put into the fridge. as soon as they arrived. Also, Ribavirin instructions say keep out of light in cool place. They are there. We are ready and waiting. Annnnnnnnnnnd nervous as heck. Hugs Motley wrote: Put your shots in the fridge. /De -----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ] On Behalf Of onelildeltagirlSent: Tuesday, June 19, 2007 1:19 PMTo: HepatitisCSupportGroupForDummies Subject: Meds My meds arrived this am. Next Saturday before noon I will receive instructions on how to. Thennnnnnnnnnnnnnnnn, I'm good to go the following Tuesday night. Have already scheduled apt. for bloodwork and my next dr's apt. Hugs to all Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 I just kept my riboveron in the medicine chest.It is better if you take your shots close to bedtime so that you will sleep through the sides.With the first shot only have a warm blanket,heating pad or hot water bottle ready cause you will get severe chills.I felt like someone put me inside the fridge.It only happens with the first shot.Stay with us so we can help you as much as possible. Gail -----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ]On Behalf Of Vickie GraySent: June 19, 2007 7:27 PMTo: HepatitisCSupportGroupForDummies Subject: RE: MedsThey were put into the fridge. as soon as they arrived. Also, Ribavirin instructions say keep out of light in cool place. They are there. We are ready and waiting. Annnnnnnnnnnd nervous as heck. Hugs Motley wrote: Put your shots in the fridge. /De -----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ] On Behalf Of onelildeltagirlSent: Tuesday, June 19, 2007 1:19 PMTo: HepatitisCSupportGroupForDummies Subject: Meds My meds arrived this am. Next Saturday before noon I will receive instructions on how to. Thennnnnnnnnnnnnnnnn, I'm good to go the following Tuesday night. Have already scheduled apt. for bloodwork and my next dr's apt. Hugs to all Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Just follow the instructions & go into tx with a positive attitude..You'll be fine and your journey will be over before ya know it....hugs, patty RE: Meds They were put into the fridge. as soon as they arrived. Also, Ribavirin instructions say keep out of light in cool place. They are there. We are ready and waiting. Annnnnnnnnnnd nervous as heck. Hugs Motley <dmotleybellsouth (DOT) net> wrote: Put your shots in the fridge. /De -----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ] On Behalf Of onelildeltagirlSent: Tuesday, June 19, 2007 1:19 PMTo: HepatitisCSupportGroupForDummies Subject: Meds My meds arrived this am. Next Saturday before noon I will receive instructions on how to. Thennnnnnnnnnnnnnnnn, I'm good to go the following Tuesday night. Have already scheduled apt. for bloodwork and my next dr's apt. Hugs to all Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. I am using the free version of SPAMfighter for private users.It has removed 3506 spam emails to date.Paying users do not have this message in their emails.Try SPAMfighter for free now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 I will. I can't wait! Ha! HugsPat McBride wrote: Just follow the instructions & go into tx with a positive attitude..You'll be fine and your journey will be over before ya know it....hugs, patty RE: Meds They were put into the fridge. as soon as they arrived. Also, Ribavirin instructions say keep out of light in cool place. They are there. We are ready and waiting. Annnnnnnnnnnd nervous as heck. Hugs Motley <dmotleybellsouth (DOT) net> wrote: Put your shots in the fridge. /De -----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ] On Behalf Of onelildeltagirlSent: Tuesday, June 19, 2007 1:19 PMTo: HepatitisCSupportGroupForDummies Subject: Meds My meds arrived this am. Next Saturday before noon I will receive instructions on how to. Thennnnnnnnnnnnnnnnn, I'm good to go the following Tuesday night. Have already scheduled apt. for bloodwork and my next dr's apt. Hugs to all Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. I am using the free version of SPAMfighter for private users.It has removed 3506 spam emails to date.Paying users do not have this message in their emails.Try SPAMfighter for free now! Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 I will. I can't wait! Ha! HugsPat McBride wrote: Just follow the instructions & go into tx with a positive attitude..You'll be fine and your journey will be over before ya know it....hugs, patty RE: Meds They were put into the fridge. as soon as they arrived. Also, Ribavirin instructions say keep out of light in cool place. They are there. We are ready and waiting. Annnnnnnnnnnd nervous as heck. Hugs Motley <dmotleybellsouth (DOT) net> wrote: Put your shots in the fridge. /De -----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ] On Behalf Of onelildeltagirlSent: Tuesday, June 19, 2007 1:19 PMTo: HepatitisCSupportGroupForDummies Subject: Meds My meds arrived this am. Next Saturday before noon I will receive instructions on how to. Thennnnnnnnnnnnnnnnn, I'm good to go the following Tuesday night. Have already scheduled apt. for bloodwork and my next dr's apt. Hugs to all Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. I am using the free version of SPAMfighter for private users.It has removed 3506 spam emails to date.Paying users do not have this message in their emails.Try SPAMfighter for free now! Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 meds Hi everyone, Has anyone tried Anakinra? I was speaking with the NIH today; they would like to try it since the prednisone trial caused Madison's fevers to come closer together. Any input or information is appreciated. Thanks! Darlene, mom to Madison, 7 yrs old, TRAPS Montreal, Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Do you mean Kineret for sleeping? We haven't tried it yet, but I know a few of the Mom's on here use it. Any thoughts on Kineret that you can give her...ladies? Darlene Stott <darlene@...> wrote: meds Hi everyone, Has anyone tried Anakinra? I was speaking with the NIH today; they would like to try it since the prednisone trial caused Madison's fevers to come closer together. Any input or information is appreciated. Thanks! Darlene, mom to Madison, 7 yrs old, TRAPS Montreal, Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Cat I tried to respond privately but the mail came back to me. I was going to tell you that I am on Rituxan infusions now, and if this doesn't help I will be changing to Orencia. I know we have at least three others on Rituxan but I'm not sure about Orencia. Hopt this helps. Stay Healthy Branson, MO Cat Triller wrote: Hi everyone~ Welcome to the new members...as always glad you found us, but sorry you had to look for us! I'm going to ask about the meds you are on for AOSD We have already focussed on the following, but may have missed some. So, besides Kinneret, Methotrexate, Humira, Celebrex, Naprosen, Enbrel, Arava.... have I missed any? Of course Prednisone! Could you read the list over and get back to me privately at Cattriller60@... Thanking you in advance for your help! Smiles and regards Cat --------------------------------- Ask a question on any topic and get answers from real people. Go to Yahoo! Answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 : Cat lives in Canada, I believe so instead of .com try putting .ca at the end of the email and see it that sends properly. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2008 Report Share Posted November 16, 2008 - ,I started on Methotrexate then Enbrel was added.I take a minimum of three 750 mg. of Vicodin a day for pain.I take many other meds.but those are the main ones.Have Mike ask his RD about it. Elly _____ On Behalf Of Horner Subject: Re: Update on Xmas list Can anyone tell me that there is one or two medicines that are more effective than others? thanks! Recent Activity * 6 New <http://groups. yahoo.com/ group/Stillsdise ase/members; _ylc=X3oDMTJmdWd xZ2NpBF 9TAzk3MzU5NzE0BGdyc ElkAzI5NDAzODUEZ 3Jwc3BJZAMxNzA1M DYxNTg5BHNlYwN2d GwEc2xrA3 ZtYnJzBHN0aW1lAzEyM jY4NjIyMDY- > Members Visit <http://groups. yahoo.com/ group/Stillsdise ase;_ylc= X3oDMTJlcGFndjhl BF9TAzk3Mz U5NzE0BGdycElkAzI5N DAzODUEZ3Jwc3BJZ AMxNzA1MDYxNTg5B HNlYwN2dGwEc2xrA 3ZnaHAEc3 RpbWUDMTIyNjg2MjIwN g--> Your Group Give Back Yahoo! <http://us.lrd. yahoo.com/ _ylc=X3oDMTJtMjh 1bWhsBF9TAzk3MzU 5NzE0BF9wAzEEZ3J wSW QDMjk0MDM4NQRncnBzc ElkAzE3MDUwNjE1O DkEc2VjA25jbW9kB HNsawNicmFuZARzd GltZQMxMj I2ODYyMjA2;_ ylg=1/SIG= 11314uv3k/ **http%3A/ /brand.yahoo. com/forgood> for Good Get inspired by a good cause. Y! Toolbar Get <http://us.lrd. yahoo.com/ _ylc=X3oDMTJvbTU yb280BF9TAzk3MzU 5NzE0BF9wAzIEZ3J wSW QDMjk0MDM4NQRncnBzc ElkAzE3MDUwNjE1O DkEc2VjA25jbW9kB HNsawN0b29sYmFyB HN0aW1lAz EyMjY4NjIyMDY- ;_ylg=1/SIG= 11c6dvmk9/ **http%3A/ /toolbar. yahoo.com/ %3F.cpdl= yg rps> it Free! easy 1-click access to your groups. Yahoo! Groups Start <http://groups. yahoo.com/ start;_ylc= X3oDMTJvZTQ0NzN0 BF9TAzk3MzU5NzE0 BF9wAzME Z3JwSWQDMjk0MDM4NQR ncnBzcElkAzE3MDU wNjE1ODkEc2VjA25 jbW9kBHNsawNncm9 1cHMyBHN0 aW1lAzEyMjY4NjIyMDY -> a group in 3 easy steps. Connect with others. .. <http://geo.yahoo. com/serv? s=97359714/ grpId=2940385/ grpspId=17050615 89/msgId =67157/stime= 1226862206/ nc1=1/nc2= 2/nc3=3> ____________ _________ _________ _________ _________ _________ _ Click here for free information on nursing degrees, up to $150/hour http://thirdpartyof fers.netzero. net/TGL2241/ fc/PnY6rx9WlbrfI uGywRssTkQKkcK0K yChyN3Rex75spDAK hm3lEgNo/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2008 Report Share Posted November 16, 2008 my first time around with stills they trew drug after drug at me and in the end some helpped and some did not and yet some did more damage then good. stills at the start is always it seams like a try and see thing as no one drug seams to work as like a antibyotic for a infection . it is all finding the right mix that works for that person but this also means the person has to be willing to talk to the doctor inhow there feeling both good and bad how it is helpping or not helpping. now on my second round with stills or after my remision I am on larger doses of MTX then before but this time no predasion at all lots of other drugs for this or that including for my fibomialga pain and some break threw pain killers finaly but it has not been an easy road and nor is it a set road as it still seam to be changing. I do hope for you and Mike that he sooner then later comes to the point of working threw the stages and comes to the place he can say yes I have stills it stinks but this is the way it is and I have to work with it and do the best i can . I know at first I wanted to act like i did not have it then I got realy mad for a time and then depresed big time . now days I do not look for a cure nor do I look for any thing that will give me a remison all I do is live each day the best I can some I do bettr then others . I will tell you my mother worrys a bit about me and of lat she did a lot but thats a mom for ya good luck and my best wishes for you both the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58 To learn about Stills Disease http://www.stillsdisease.org/stills_info For conservitive minded people http://www.americac2c.org " If we ever forget that we're one nation under God, then we will be a nation gone under. " ~ Reagan In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown A nation can survive its fools and even the ambitious. But it cannot survive treason from within.~Cicero " The most terrifying words in the English language are: I'm from the government and I'm here to help. " ~ Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2008 Report Share Posted November 16, 2008 my first time around with stills they trew drug after drug at me and in the end some helpped and some did not and yet some did more damage then good. stills at the start is always it seams like a try and see thing as no one drug seams to work as like a antibyotic for a infection . it is all finding the right mix that works for that person but this also means the person has to be willing to talk to the doctor inhow there feeling both good and bad how it is helpping or not helpping. now on my second round with stills or after my remision I am on larger doses of MTX then before but this time no predasion at all lots of other drugs for this or that including for my fibomialga pain and some break threw pain killers finaly but it has not been an easy road and nor is it a set road as it still seam to be changing. I do hope for you and Mike that he sooner then later comes to the point of working threw the stages and comes to the place he can say yes I have stills it stinks but this is the way it is and I have to work with it and do the best i can . I know at first I wanted to act like i did not have it then I got realy mad for a time and then depresed big time . now days I do not look for a cure nor do I look for any thing that will give me a remison all I do is live each day the best I can some I do bettr then others . I will tell you my mother worrys a bit about me and of lat she did a lot but thats a mom for ya good luck and my best wishes for you both the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58 To learn about Stills Disease http://www.stillsdisease.org/stills_info For conservitive minded people http://www.americac2c.org " If we ever forget that we're one nation under God, then we will be a nation gone under. " ~ Reagan In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown A nation can survive its fools and even the ambitious. But it cannot survive treason from within.~Cicero " The most terrifying words in the English language are: I'm from the government and I'm here to help. " ~ Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2008 Report Share Posted November 16, 2008 Hello Marty Thank you for your kind words and your insightful wisdom. Yes, I know as a mom I need to just wait and let my son come to grips with things in his own way and in his own time. Meanwhile, I'll just keep gathering information from wonderful people such as yourself. Keep up the good work! Re: Meds my first time around with stills they trew drug after drug at me and in the end some helpped and some did not and yet some did more damage then good. stills at the start is always it seams like a try and see thing as no one drug seams to work as like a antibyotic for a infection . it is all finding the right mix that works for that person but this also means the person has to be willing to talk to the doctor inhow there feeling both good and bad how it is helpping or not helpping. now on my second round with stills or after my remision I am on larger doses of MTX then before but this time no predasion at all lots of other drugs for this or that including for my fibomialga pain and some break threw pain killers finaly but it has not been an easy road and nor is it a set road as it still seam to be changing. I do hope for you and Mike that he sooner then later comes to the point of working threw the stages and comes to the place he can say yes I have stills it stinks but this is the way it is and I have to work with it and do the best i can . I know at first I wanted to act like i did not have it then I got realy mad for a time and then depresed big time . now days I do not look for a cure nor do I look for any thing that will give me a remison all I do is live each day the best I can some I do bettr then others . I will tell you my mother worrys a bit about me and of lat she did a lot but thats a mom for ya good luck and my best wishes for you both the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58 To learn about Stills Disease http://www.stillsdisease.org/stills_info For conservitive minded people http://www.americac2c.org " If we ever forget that we're one nation under God, then we will be a nation gone under. " ~ Reagan In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown A nation can survive its fools and even the ambitious. But it cannot survive treason from within.~Cicero " The most terrifying words in the English language are: I'm from the government and I'm here to help. " ~ Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2008 Report Share Posted November 16, 2008 Hello Marty Thank you for your kind words and your insightful wisdom. Yes, I know as a mom I need to just wait and let my son come to grips with things in his own way and in his own time. Meanwhile, I'll just keep gathering information from wonderful people such as yourself. Keep up the good work! Re: Meds my first time around with stills they trew drug after drug at me and in the end some helpped and some did not and yet some did more damage then good. stills at the start is always it seams like a try and see thing as no one drug seams to work as like a antibyotic for a infection . it is all finding the right mix that works for that person but this also means the person has to be willing to talk to the doctor inhow there feeling both good and bad how it is helpping or not helpping. now on my second round with stills or after my remision I am on larger doses of MTX then before but this time no predasion at all lots of other drugs for this or that including for my fibomialga pain and some break threw pain killers finaly but it has not been an easy road and nor is it a set road as it still seam to be changing. I do hope for you and Mike that he sooner then later comes to the point of working threw the stages and comes to the place he can say yes I have stills it stinks but this is the way it is and I have to work with it and do the best i can . I know at first I wanted to act like i did not have it then I got realy mad for a time and then depresed big time . now days I do not look for a cure nor do I look for any thing that will give me a remison all I do is live each day the best I can some I do bettr then others . I will tell you my mother worrys a bit about me and of lat she did a lot but thats a mom for ya good luck and my best wishes for you both the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58 To learn about Stills Disease http://www.stillsdisease.org/stills_info For conservitive minded people http://www.americac2c.org " If we ever forget that we're one nation under God, then we will be a nation gone under. " ~ Reagan In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown A nation can survive its fools and even the ambitious. But it cannot survive treason from within.~Cicero " The most terrifying words in the English language are: I'm from the government and I'm here to help. " ~ Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2008 Report Share Posted November 17, 2008 Marty, Hi, glad for you. It's been a long time. I told you I have also F.M let me know if your interested in their web adress. They also have a very good magazine. I felt that I no longer knew WISH was F.M PAIN or this other cond. I used to be able to control it wit. 2,3 dosis of Hydroc. but not any more, for the last yr. it symply just don't touch the pain & now is every where PLUS joints!!. So how do you know if it's Still pain or F.M?? I left muy old Rheumy because he kept blowing me off totally when I kept telling him that thing were tooo bad, they had changed drastically,. I did'nt know myself that the eppisodes I had began were part of a Rheumatologist area. But HE should 've!! . I asked the new one if she would take over the F.M meds. before I left the other, I didn't need to keep 2 RDS. she told me yes, Now that the time came she assked what I took & told me that she did not prescribed pain meds. ( I disclosed all that on muy new patient info) & we went over again as we spoked. Now she told me that she likes to reffered her patients on bad pain to pain specialists. I'm almost out of med. ( & have appmt. there for 1 week of Dec. & they told me he does NOT prescribed med. on the 1ST appmt.In a way I'm thinking that this may be for the best since What I was taking was not taking acare of it . Did like 30 % of the time, like on muy good days would cover more of it out, but maybe this will allow me to be more funtional, wish now I'm not 80 % of the time, but it is not just due to pain as you all know very well. Thanks for your time VIVI **************Get the Moviefone Toolbar. Showtimes, theaters, movie news & more!(http://pr.atwola.com/promoclk/100000075x1212774565x1200812037/aol?redir=ht\ t p://toolbar.aol.com/moviefone/download.html?ncid=emlcntusdown00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2008 Report Share Posted November 17, 2008 Vivi The best way I tell if my pain is stills or Fibo is this Joint swelling and pain stills deep mussel and all pressure points when touched being painful fibo. The one that showed me this and is also the one that always seam to find every spot that hurts in my RA doctor. She also was an acupuncturist (or studied it at lest) believes in some herbal help along with what we call your every day drugs. She is at lest for me great. she never just hands out any drug but works to make sure it is not a single time but on going first then starts out slow and works up (some time I have wanted to yell at her for that but in the end I have been glad) doing it this way most of the time things can and are keep in check and livable notice I did not say gone. I live with what seam like some pain all the time but as long as it is kept under a limit I can function okay and not crew every ones head off but when it breaks that limit best thing to do is lock me up and stay away from the mad dog I become as I do get snappy and very crabby at times. I try to hold it back but there are them days. I just do not want to become the zombie I had 6 years ago so it is my chouse to live with some pain not every one can do that but I use tricks to help me like bath soaks and Lamaze breathing (no baby have come from that to bad as then I would be rich LOL) just I have found some thing that work for me. I also try not to over push my self but in that I do lose a lot and then I do pay for it I just try not to make any one other also pay for it Hugs all the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58 To learn about Stills Disease http://www.stillsdisease.org/stills_info For conservitive minded people http://www.americac2c.org " If we ever forget that we're one nation under God, then we will be a nation gone under. " ~ Reagan In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown A nation can survive its fools and even the ambitious. But it cannot survive treason from within.~Cicero " The most terrifying words in the English language are: I'm from the government and I'm here to help. " ~ Reagan Quote Link to comment Share on other sites More sharing options...
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