Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 Judie, You are a very dedicated person to help like this.... most people don't try to understand it seems. You wil find a lot of great info from people who have been there. and bad. and there and back:) WHat drug is being offered to your friend? Welcome!! Liz ~~~~~~ " The truly creative mind in any field is no more than this: A human creature born (extraordinarily) sensitive. To him/her a touch is a blow, a sound is a noise, a misfortune is a tragedy, a joy is an ecstasy, a friend is a lover, and failure is death.--Pearl S. Buck ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ EMAIL: juliette@... **ICQ 49746198** MSN-LizKP1952@... PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK ADDult HOME PAGE: http://members.tripod.com/~LizK/addult.htm ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2003 Report Share Posted August 8, 2003 Dear Liz: You inquired as to the name of the drug they offered as experimental. He wasn't sure of the spelling. Enbrel or Embrel. They said in would be taken for a year and hopefully there would be no other occurrences. Thank you for your concern. Judie B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2003 Report Share Posted August 8, 2003 Oh the big E! I think i have heard of that somewhere *Big grin The drug that i waited a year to get on and had finally been put on remicade. and still am on that. A year?? does the dr. except a cure in a year? Or total stabilization??? My my I hope he isn't portraying that cus it usually doesn't happen!! Liz ~~~~~~ " The truly creative mind in any field is no more than this: A human creature born (extraordinarily) sensitive. To him/her a touch is a blow, a sound is a noise, a misfortune is a tragedy, a joy is an ecstasy, a friend is a lover, and failure is death.--Pearl S. Buck ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ EMAIL: juliette@... **ICQ 49746198** MSN-LizKP1952@... PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK ADDult HOME PAGE: http://members.tripod.com/~LizK/addult.htm ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Dear Liz, I found your comments interesting. Can I assume that patients are promised this drug but in reality they are not given the drug? If so why? You were put on Remicade instead. What is your opinion of Remicade? I don't know whether the prospect of cure or stabilization was offered. Thank You, Judie B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 > My my I hope he isn't portraying that cus > it usually doesn't happen!! > > Liz Hi Liz My internarheumy said to me, that one can only " manage " the disease, there are no cures. Both Enbrel and Remicade can control active inflamation but can do nothing to aleviate all ready fused parts and the pressure on nerves that it entails. +Dave --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.505 / Virus Database: 302 - Release Date: 30/07/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2003 Report Share Posted August 10, 2003 In response to your e-mail.+Dave.... this is a true story. Both Remicide and Enbrel can only stop the progression of the disease but can't undo what has already been done. From all of my research and questions I have asked (no question is STUPID the only one that may be is the one that is never asked....) Which I have asked several here and others have refused to give answers and rejected my questions.... I have found those who would answer them that had nothing to gain or to loose ... those who would answer them freely, trying not to over- -embellish the answers. You are very correct in the fashion you tried to answer it in....+ Dave it takes pain-nash (guts) to try. God Bless you and other survivors, Brie -----You must become willing to suffer and go further than you think you can in fighting and controlling what can be controlled in these diseases. Push until you get what you need to become as well as you can be no matter who thinks you are pushing too hard. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2003 Report Share Posted August 10, 2003 Hi Brie and Dave, I would like to add one other point, many in our group suffer from fibromyalgia and current research does not show that either Enbrel or Remicade are effective for soft tissue pain. A good example of this difference is West Nile and Lyme Disease, two triggers for autoimmune diseases, but Enbrel and Remicade could make both the diseases and their symptoms which include fibromyalgia far worse, not better. However, if your pain is due to deterioration of joints, then research has shown Remicade and Enbrel have shown very good results, although what Dave said is true, once the damage is done, it's done, nothing has been found yet that will reverse it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2003 Report Share Posted August 11, 2003 I was having extremely tight tendons and muscles mostly around my neck and upper back. My rheumatologist put me on Diltiazem - a blood pressure/calcium blocker medicine and it works fairly well. Quote Link to comment Share on other sites More sharing options...
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