Guest guest Posted April 7, 2007 Report Share Posted April 7, 2007 Hi, I just know that my girlfriend is on remicade for RA. I am fearful as they decrease my prednisone dosage that I will lose my eyesight as well. You will have to let me know how it works. I am down to 20 mg and alternating 15 and it seems like my eyes are getting blurry the lower we go. I initially lost my vision for close in my left eye before christmas and had to go on the IV solumedrol treatments and then 60 mg of prednisone. KatSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2007 Report Share Posted October 16, 2007 Guys, Remicade is probably not going to be FDA approved for sarc-- so it will continue to be off label use. However, there are articles that state that it is effective, and I do hope that each of you is reading ALL the emails that are posted to the group and not just the ones that have your issue on the subject line. So many times the questions we ask are situations that all of us are going thru, and I make my replys available to all. This is the greatest benefit of "group" process. We all need to learn to "search" for information. The easiest way is to put in -the body part (ie. lungs) and sarcoidosis. Or search by "humira" and sarcoidosis. Or by "Remicade" and sarcoidosis. You will get a a list of sites, and by clicking on anyone of them, you will get the referenced article. If it is a site that requires you buy the article, you may want to just get the summary (no cost) and give it to your MD. Maybe he already has a subscription to the primary site. Local cancer libraries also have computer access, generally speaking, and you can often times get the articles from those locations without cost. Best wishes for all of us, Tracie NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2007 Report Share Posted October 16, 2007 Guys, Remicade is probably not going to be FDA approved for sarc-- so it will continue to be off label use. However, there are articles that state that it is effective, and I do hope that each of you is reading ALL the emails that are posted to the group and not just the ones that have your issue on the subject line. So many times the questions we ask are situations that all of us are going thru, and I make my replys available to all. This is the greatest benefit of "group" process. We all need to learn to "search" for information. The easiest way is to put in -the body part (ie. lungs) and sarcoidosis. Or search by "humira" and sarcoidosis. Or by "Remicade" and sarcoidosis. You will get a a list of sites, and by clicking on anyone of them, you will get the referenced article. If it is a site that requires you buy the article, you may want to just get the summary (no cost) and give it to your MD. Maybe he already has a subscription to the primary site. Local cancer libraries also have computer access, generally speaking, and you can often times get the articles from those locations without cost. Best wishes for all of us, Tracie NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 Hi, I was recently told by my neurologist that Remicade will be ineffective if there is an elevated protein count in my spinal fluid and recommends that anyone intending to use Remicade for NeuroSarc should have a lumbar puncture first. Any thoughts on this? Ricktiodaat@... wrote: Guys, Remicade is probably not going to be FDA approved for sarc-- so it will continue to be off label use. However, there are articles that state that it is effective, and I do hope that each of you is reading ALL the emails that are posted to the group and not just the ones that have your issue on the subject line. So many times the questions we ask are situations that all of us are going thru, and I make my replys available to all. This is the greatest benefit of "group" process. We all need to learn to "search" for information. The easiest way is to put in -the body part (ie. lungs) and sarcoidosis. Or search by "humira" and sarcoidosis. Or by "Remicade" and sarcoidosis. You will get a a list of sites, and by clicking on anyone of them, you will get the referenced article. If it is a site that requires you buy the article, you may want to just get the summary (no cost) and give it to your MD. Maybe he already has a subscription to the primary site. Local cancer libraries also have computer access, generally speaking, and you can often times get the articles from those locations without cost. Best wishes for all of us, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 Hi, I was recently told by my neurologist that Remicade will be ineffective if there is an elevated protein count in my spinal fluid and recommends that anyone intending to use Remicade for NeuroSarc should have a lumbar puncture first. Any thoughts on this? Ricktiodaat@... wrote: Guys, Remicade is probably not going to be FDA approved for sarc-- so it will continue to be off label use. However, there are articles that state that it is effective, and I do hope that each of you is reading ALL the emails that are posted to the group and not just the ones that have your issue on the subject line. So many times the questions we ask are situations that all of us are going thru, and I make my replys available to all. This is the greatest benefit of "group" process. We all need to learn to "search" for information. The easiest way is to put in -the body part (ie. lungs) and sarcoidosis. Or search by "humira" and sarcoidosis. Or by "Remicade" and sarcoidosis. You will get a a list of sites, and by clicking on anyone of them, you will get the referenced article. If it is a site that requires you buy the article, you may want to just get the summary (no cost) and give it to your MD. Maybe he already has a subscription to the primary site. Local cancer libraries also have computer access, generally speaking, and you can often times get the articles from those locations without cost. Best wishes for all of us, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 Rick, I've never heard that. In fact, elevated protein is a possible marker for NS. I'll try to find something on it for you. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: jack11973@...Date: Wed, 17 Oct 2007 05:18:49 -0700Subject: Re: Remicade Hi, I was recently told by my neurologist that Remicade will be ineffective if there is an elevated protein count in my spinal fluid and recommends that anyone intending to use Remicade for NeuroSarc should have a lumbar puncture first. Any thoughts on this? Ricktiodaat (AT) aol (DOT) com wrote: Guys, Remicade is probably not going to be FDA approved for sarc-- so it will continue to be off label use. However, there are articles that state that it is effective, and I do hope that each of you is reading ALL the emails that are posted to the group and not just the ones that have your issue on the subject line. So many times the questions we ask are situations that all of us are going thru, and I make my replys available to all. This is the greatest benefit of "group" process. We all need to learn to "search" for information. The easiest way is to put in -the body part (ie. lungs) and sarcoidosis. Or search by "humira" and sarcoidosis. Or by "Remicade" and sarcoidosis. You will get a a list of sites, and by clicking on anyone of them, you will get the referenced article. If it is a site that requires you buy the article, you may want to just get the summary (no cost) and give it to your MD. Maybe he already has a subscription to the primary site. Local cancer libraries also have computer access, generally speaking, and you can often times get the articles from those locations without cost. Best wishes for all of us, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 Rick, I've never heard that. In fact, elevated protein is a possible marker for NS. I'll try to find something on it for you. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: jack11973@...Date: Wed, 17 Oct 2007 05:18:49 -0700Subject: Re: Remicade Hi, I was recently told by my neurologist that Remicade will be ineffective if there is an elevated protein count in my spinal fluid and recommends that anyone intending to use Remicade for NeuroSarc should have a lumbar puncture first. Any thoughts on this? Ricktiodaat (AT) aol (DOT) com wrote: Guys, Remicade is probably not going to be FDA approved for sarc-- so it will continue to be off label use. However, there are articles that state that it is effective, and I do hope that each of you is reading ALL the emails that are posted to the group and not just the ones that have your issue on the subject line. So many times the questions we ask are situations that all of us are going thru, and I make my replys available to all. This is the greatest benefit of "group" process. We all need to learn to "search" for information. The easiest way is to put in -the body part (ie. lungs) and sarcoidosis. Or search by "humira" and sarcoidosis. Or by "Remicade" and sarcoidosis. You will get a a list of sites, and by clicking on anyone of them, you will get the referenced article. If it is a site that requires you buy the article, you may want to just get the summary (no cost) and give it to your MD. Maybe he already has a subscription to the primary site. Local cancer libraries also have computer access, generally speaking, and you can often times get the articles from those locations without cost. Best wishes for all of us, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 Rick, I did some Internet research and the only thing I could come up with is that protein in the CSF "can" be an indicator of infection. Of course, Remicade suppresses immune response, so infection is always a concern. I couldn't find anything specific to Remicade & CSF protein, so I emailed Dr. Baughman, one of the Remicade gurus, who just spoke at the Indy Sarc Conf. last weekend. I'll let you know wht he says. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: jack11973@...Date: Wed, 17 Oct 2007 05:18:49 -0700Subject: Re: Remicade Hi, I was recently told by my neurologist that Remicade will be ineffective if there is an elevated protein count in my spinal fluid and recommends that anyone intending to use Remicade for NeuroSarc should have a lumbar puncture first. Any thoughts on this? Ricktiodaat (AT) aol (DOT) com wrote: Guys, Remicade is probably not going to be FDA approved for sarc-- so it will continue to be off label use. However, there are articles that state that it is effective, and I do hope that each of you is reading ALL the emails that are posted to the group and not just the ones that have your issue on the subject line. So many times the questions we ask are situations that all of us are going thru, and I make my replys available to all. This is the greatest benefit of "group" process. We all need to learn to "search" for information. The easiest way is to put in -the body part (ie. lungs) and sarcoidosis. Or search by "humira" and sarcoidosis. Or by "Remicade" and sarcoidosis. You will get a a list of sites, and by clicking on anyone of them, you will get the referenced article. If it is a site that requires you buy the article, you may want to just get the summary (no cost) and give it to your MD. Maybe he already has a subscription to the primary site. Local cancer libraries also have computer access, generally speaking, and you can often times get the articles from those locations without cost. Best wishes for all of us, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 Rick, I did some Internet research and the only thing I could come up with is that protein in the CSF "can" be an indicator of infection. Of course, Remicade suppresses immune response, so infection is always a concern. I couldn't find anything specific to Remicade & CSF protein, so I emailed Dr. Baughman, one of the Remicade gurus, who just spoke at the Indy Sarc Conf. last weekend. I'll let you know wht he says. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: jack11973@...Date: Wed, 17 Oct 2007 05:18:49 -0700Subject: Re: Remicade Hi, I was recently told by my neurologist that Remicade will be ineffective if there is an elevated protein count in my spinal fluid and recommends that anyone intending to use Remicade for NeuroSarc should have a lumbar puncture first. Any thoughts on this? Ricktiodaat (AT) aol (DOT) com wrote: Guys, Remicade is probably not going to be FDA approved for sarc-- so it will continue to be off label use. However, there are articles that state that it is effective, and I do hope that each of you is reading ALL the emails that are posted to the group and not just the ones that have your issue on the subject line. So many times the questions we ask are situations that all of us are going thru, and I make my replys available to all. This is the greatest benefit of "group" process. We all need to learn to "search" for information. The easiest way is to put in -the body part (ie. lungs) and sarcoidosis. Or search by "humira" and sarcoidosis. Or by "Remicade" and sarcoidosis. You will get a a list of sites, and by clicking on anyone of them, you will get the referenced article. If it is a site that requires you buy the article, you may want to just get the summary (no cost) and give it to your MD. Maybe he already has a subscription to the primary site. Local cancer libraries also have computer access, generally speaking, and you can often times get the articles from those locations without cost. Best wishes for all of us, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 I just wanted to chime in and tell you that Remicade has been the only medicine that my wife has received that has helped reduce the the white blood cell count in her spinal fluid and swelling of the brain due to Neuroscacoidosis. She has an MRI and spinal tap at the beginning of her Remicade series and at the end which is usually 6 months. Thanks Kent > Guys, > Remicade is probably not going to be FDA approved for sarc-- so it will continue to be off label use. > However, there are articles that state that it is effective, and I do hope that each of you is reading ALL the emails that are posted to the group and not just the ones that have your issue on the subject line. > > So many times the questions we ask are situations that all of us are going thru, and I make my replys available to all. This is the greatest benefit of " group " process. > > We all need to learn to " search " for information. The easiest way is to put in -the body part (ie. lungs) and sarcoidosis. Or search by " humira " and sarcoidosis. Or by " Remicade " and sarcoidosis. > > You will get a a list of sites, and by clicking on anyone of them, you will get the referenced article. If it is a site that requires you buy the article, you may want to just get the summary (no cost) and give it to your MD. Maybe he already has a subscription to the primary site. > > Local cancer libraries also have computer access, generally speaking, and you can often times get the articles from those locations without cost. > > Best wishes for all of us, > Tracie > NS Co-owner/moderator > > > > > --------------------------------- > See what's new at AOL.com and Make AOL Your Homepage. > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 I just wanted to chime in and tell you that Remicade has been the only medicine that my wife has received that has helped reduce the the white blood cell count in her spinal fluid and swelling of the brain due to Neuroscacoidosis. She has an MRI and spinal tap at the beginning of her Remicade series and at the end which is usually 6 months. Thanks Kent > Guys, > Remicade is probably not going to be FDA approved for sarc-- so it will continue to be off label use. > However, there are articles that state that it is effective, and I do hope that each of you is reading ALL the emails that are posted to the group and not just the ones that have your issue on the subject line. > > So many times the questions we ask are situations that all of us are going thru, and I make my replys available to all. This is the greatest benefit of " group " process. > > We all need to learn to " search " for information. The easiest way is to put in -the body part (ie. lungs) and sarcoidosis. Or search by " humira " and sarcoidosis. Or by " Remicade " and sarcoidosis. > > You will get a a list of sites, and by clicking on anyone of them, you will get the referenced article. If it is a site that requires you buy the article, you may want to just get the summary (no cost) and give it to your MD. Maybe he already has a subscription to the primary site. > > Local cancer libraries also have computer access, generally speaking, and you can often times get the articles from those locations without cost. > > Best wishes for all of us, > Tracie > NS Co-owner/moderator > > > > > --------------------------------- > See what's new at AOL.com and Make AOL Your Homepage. > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 Yes Tracie. Congratulations! I have been on Remicade for nearly a year and am finally off all pain meds. Currently tapering prednisone down to 25 mg every other day, hoping Remicade will allow me to get off altogether. My insurance company pays for it. They told me if a doctor prescribes it, they pay for it, period. They also said that it is a medication that is being used for more and more diseases all the time. The only problem so far is that my immune system is very suppressed. I had a bad flare-up of herpes simplex 1 in August which resulted in double pneumonia which could have been caused by my suppressed immune system. It's always a trade-off. They might put me on an anti-viral during high-stress periods (like an upcoming surgery) to prevent another recurrence of the virus. I hope you find as much success as I have had with Remicade. Best of luck. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 Yes Tracie. Congratulations! I have been on Remicade for nearly a year and am finally off all pain meds. Currently tapering prednisone down to 25 mg every other day, hoping Remicade will allow me to get off altogether. My insurance company pays for it. They told me if a doctor prescribes it, they pay for it, period. They also said that it is a medication that is being used for more and more diseases all the time. The only problem so far is that my immune system is very suppressed. I had a bad flare-up of herpes simplex 1 in August which resulted in double pneumonia which could have been caused by my suppressed immune system. It's always a trade-off. They might put me on an anti-viral during high-stress periods (like an upcoming surgery) to prevent another recurrence of the virus. I hope you find as much success as I have had with Remicade. Best of luck. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2007 Report Share Posted October 19, 2007 My insurance company pays for it. They told me if a doctorprescribes it, they pay for it, period. They also said that it is amedication that is being used for more and more diseases all the time. This statement really gave me hope; that some decision-maker in an insurance company would recognize the research & try to keep their coverage fair and appropriate. Maybe some of the anonymous decision-makers who decline coverage, not just for Remicade or NS, but for so many other conditions, will open their minds to the rapid advances being made in medicine. thanks, . Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: wendy_cidp@...Date: Fri, 19 Oct 2007 03:19:26 +0000Subject: Re: Remicade Yes Tracie. Congratulations! I have been on Remicade for nearly a yearand am finally off all pain meds. Currently tapering prednisone downto 25 mg every other day, hoping Remicade will allow me to get offaltogether. My insurance company pays for it. They told me if a doctorprescribes it, they pay for it, period. They also said that it is amedication that is being used for more and more diseases all the time.The only problem so far is that my immune system is very suppressed. Ihad a bad flare-up of herpes simplex 1 in August which resulted indouble pneumonia which could have been caused by my suppressed immunesystem. It's always a trade-off. They might put me on an anti-viralduring high-stress periods (like an upcoming surgery) to preventanother recurrence of the virus.I hope you find as much success as I have had with Remicade. Best ofluck. - Windows Live Hotmail and Microsoft Office Outlook – together at last. Get it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2007 Report Share Posted October 19, 2007 My insurance company pays for it. They told me if a doctorprescribes it, they pay for it, period. They also said that it is amedication that is being used for more and more diseases all the time. This statement really gave me hope; that some decision-maker in an insurance company would recognize the research & try to keep their coverage fair and appropriate. Maybe some of the anonymous decision-makers who decline coverage, not just for Remicade or NS, but for so many other conditions, will open their minds to the rapid advances being made in medicine. thanks, . Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: wendy_cidp@...Date: Fri, 19 Oct 2007 03:19:26 +0000Subject: Re: Remicade Yes Tracie. Congratulations! I have been on Remicade for nearly a yearand am finally off all pain meds. Currently tapering prednisone downto 25 mg every other day, hoping Remicade will allow me to get offaltogether. My insurance company pays for it. They told me if a doctorprescribes it, they pay for it, period. They also said that it is amedication that is being used for more and more diseases all the time.The only problem so far is that my immune system is very suppressed. Ihad a bad flare-up of herpes simplex 1 in August which resulted indouble pneumonia which could have been caused by my suppressed immunesystem. It's always a trade-off. They might put me on an anti-viralduring high-stress periods (like an upcoming surgery) to preventanother recurrence of the virus.I hope you find as much success as I have had with Remicade. Best ofluck. - Windows Live Hotmail and Microsoft Office Outlook – together at last. Get it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2007 Report Share Posted October 19, 2007 Hi, Everyone here and that I talk to have different symptoms and react differently to the same meds. My problem is a severe "banding" pain around my abdomen which when at it's worst gives me pain right down to my knees and effects my walking and vision (double). My white blood count was never an issue, all my blood work comes back normal. regards, Rickmcfarlak wrote: I just wanted to chime in and tell you that Remicade has been the only medicine that my wife has received that has helped reduce the the white blood cell count in her spinal fluid and swelling of the brain due to Neuroscacoidosis. She has an MRI and spinal tap at the beginning of her Remicade series and at the end which is usually 6 months. ThanksKent> Guys,> Remicade is probably not going to be FDA approved for sarc-- so it will continue to be off label use.> However, there are articles that state that it is effective, and I do hope that each of you is reading ALL the emails that are posted to the group and not just the ones that have your issue on the subject line.> > So many times the questions we ask are situations that all of us are going thru, and I make my replys available to all. This is the greatest benefit of "group" process.> > We all need to learn to "search" for information. The easiest way is to put in -the body part (ie. lungs) and sarcoidosis. Or search by "humira" and sarcoidosis. Or by "Remicade" and sarcoidosis. > > You will get a a list of sites, and by clicking on anyone of them, you will get the referenced article. If it is a site that requires you buy the article, you may want to just get the summary (no cost) and give it to your MD. Maybe he already has a subscription to the primary site.> > Local cancer libraries also have computer access, generally speaking, and you can often times get the articles from those locations without cost. > > Best wishes for all of us,> Tracie> NS Co-owner/moderator> > > > > ---------------------------------> See what's new at AOL.com and Make AOL Your Homepage.> > > > > > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2007 Report Share Posted October 19, 2007 Thanks Rose! Rose wrote: Rick, I've never heard that. In fact, elevated protein is a possible marker for NS. I'll try to find something on it for you. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: jack11973 (AT) yahoo (DOT) comDate: Wed, 17 Oct 2007 05:18:49 -0700Subject: Re: Remicade Hi, I was recently told by my neurologist that Remicade will be ineffective if there is an elevated protein count in my spinal fluid and recommends that anyone intending to use Remicade for NeuroSarc should have a lumbar puncture first. Any thoughts on this? Ricktiodaat (AT) aol (DOT) com wrote: Guys, Remicade is probably not going to be FDA approved for sarc-- so it will continue to be off label use. However, there are articles that state that it is effective, and I do hope that each of you is reading ALL the emails that are posted to the group and not just the ones that have your issue on the subject line. So many times the questions we ask are situations that all of us are going thru, and I make my replys available to all. This is the greatest benefit of "group" process. We all need to learn to "search" for information. The easiest way is to put in -the body part (ie. lungs) and sarcoidosis. Or search by "humira" and sarcoidosis. Or by "Remicade" and sarcoidosis. You will get a a list of sites, and by clicking on anyone of them, you will get the referenced article. If it is a site that requires you buy the article, you may want to just get the summary (no cost) and give it to your MD. Maybe he already has a subscription to the primary site. Local cancer libraries also have computer access, generally speaking, and you can often times get the articles from those locations without cost. Best wishes for all of us, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2007 Report Share Posted October 19, 2007 that would be so wonderful., we are now working on an appeal with my insurance company just to Humeria, Remicade has been flat out denied. So pray that at least I can get this, as the strength is getting weaker in both my legs nowJ blessing to all Marla Marla Bramer From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose Sent: Friday, October 19, 2007 2:28 AM To: neurosarcoidosis Subject: RE: Re: Remicade My insurance company pays for it. They told me if a doctor prescribes it, they pay for it, period. They also said that it is a medication that is being used for more and more diseases all the time. This statement really gave me hope; that some decision-maker in an insurance company would recognize the research & try to keep their coverage fair and appropriate. Maybe some of the anonymous decision-makers who decline coverage, not just for Remicade or NS, but for so many other conditions, will open their minds to the rapid advances being made in medicine. thanks, . Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: wendy_cidp (AT) yahoo (DOT) ca Date: Fri, 19 Oct 2007 03:19:26 +0000 Subject: Re: Remicade Yes Tracie. Congratulations! I have been on Remicade for nearly a year and am finally off all pain meds. Currently tapering prednisone down to 25 mg every other day, hoping Remicade will allow me to get off altogether. My insurance company pays for it. They told me if a doctor prescribes it, they pay for it, period. They also said that it is a medication that is being used for more and more diseases all the time. The only problem so far is that my immune system is very suppressed. I had a bad flare-up of herpes simplex 1 in August which resulted in double pneumonia which could have been caused by my suppressed immune system. It's always a trade-off. They might put me on an anti-viral during high-stress periods (like an upcoming surgery) to prevent another recurrence of the virus. I hope you find as much success as I have had with Remicade. Best of luck. - Windows Live Hotmail and Microsoft Office Outlook – together at last. Get it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 Marla, you are often in my thoughts. I hope & pray that your appeal is successful. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: mebramer@...Date: Fri, 19 Oct 2007 12:15:22 -0700Subject: RE: Re: Remicade that would be so wonderful., we are now working on an appeal with my insurance company just to Humeria, Remicade has been flat out denied. So pray that at least I can get this, as the strength is getting weaker in both my legs nowJ blessing to all Marla Marla Bramer From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose Sent: Friday, October 19, 2007 2:28 AMTo: neurosarcoidosis Subject: RE: Re: Remicade My insurance company pays for it. They told me if a doctorprescribes it, they pay for it, period. They also said that it is amedication that is being used for more and more diseases all the time. This statement really gave me hope; that some decision-maker in an insurance company would recognize the research & try to keep their coverage fair and appropriate. Maybe some of the anonymous decision-makers who decline coverage, not just for Remicade or NS, but for so many other conditions, will open their minds to the rapid advances being made in medicine. thanks, . Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: wendy_cidp (AT) yahoo (DOT) caDate: Fri, 19 Oct 2007 03:19:26 +0000Subject: Re: Remicade Yes Tracie. Congratulations! I have been on Remicade for nearly a yearand am finally off all pain meds. Currently tapering prednisone downto 25 mg every other day, hoping Remicade will allow me to get offaltogether. My insurance company pays for it. They told me if a doctorprescribes it, they pay for it, period. They also said that it is amedication that is being used for more and more diseases all the time.The only problem so far is that my immune system is very suppressed. Ihad a bad flare-up of herpes simplex 1 in August which resulted indouble pneumonia which could have been caused by my suppressed immunesystem. It's always a trade-off. They might put me on an anti-viralduring high-stress periods (like an upcoming surgery) to preventanother recurrence of the virus.I hope you find as much success as I have had with Remicade. Best ofluck. - Windows Live Hotmail and Microsoft Office Outlook – together at last. Get it now! Climb to the top of the charts! Play Star Shuffle: the word scramble challenge with star power. Play Now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 Rose, Thank you, I have to do some more testing this week for the appeal, I have to have an Echocardium,  a latex allergy test, and a TB.  My husband and Doc are working together and they think if all these tests turn out neg. that the appeal should go through, because I guess once the doctor states the reason I can’t have the drug, he can’t add more reason on.  So will see? Thanks for the thoughts, I think of you often. Do you find it hard holding a newborn? I do and I think it’s because I then long for the old days, but we must, we must live for now. The weakness is getting worse and in both legs now. I had a girls night out with a couple friends, and we went to a 2 hours movie, when I got up I couldn’t stand up, and tripped caught myself on the chair, then got to the aisle and couldn’t get them to move, so really I looked like a drunk trying to walk out of the movie theater, I find my self feeling as though I am just going to fall, decrease in balance, not dizzy but the whoa I drank to much feeling, and darn it I’m not even drinking!! Hope you have good days this week, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose Sent: Friday, October 19, 2007 11:39 PM To: neurosarcoidosis Subject: RE: Re: Remicade Marla, you are often in my thoughts. I hope & pray that your appeal is successful. Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 " How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these. " ~ Washington Carver To: Neurosarcoidosis From: mebramer (AT) gmail (DOT) com Date: Fri, 19 Oct 2007 12:15:22 -0700 Subject: RE: Re: Remicade that would be so wonderful., we are now working on an appeal with my insurance company just to Humeria, Remicade has been flat out denied. So pray that at least I can get this, as the strength is getting weaker in both my legs nowJ blessing to all Marla Marla Bramer From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose Sent: Friday, October 19, 2007 2:28 AM To: neurosarcoidosis Subject: RE: Re: Remicade My insurance company pays for it. They told me if a doctor prescribes it, they pay for it, period. They also said that it is a medication that is being used for more and more diseases all the time. This statement really gave me hope; that some decision-maker in an insurance company would recognize the research & try to keep their coverage fair and appropriate. Maybe some of the anonymous decision-makers who decline coverage, not just for Remicade or NS, but for so many other conditions, will open their minds to the rapid advances being made in medicine. thanks, . Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: wendy_cidp (AT) yahoo (DOT) ca Date: Fri, 19 Oct 2007 03:19:26 +0000 Subject: Re: Remicade Yes Tracie. Congratulations! I have been on Remicade for nearly a year and am finally off all pain meds. Currently tapering prednisone down to 25 mg every other day, hoping Remicade will allow me to get off altogether. My insurance company pays for it. They told me if a doctor prescribes it, they pay for it, period. They also said that it is a medication that is being used for more and more diseases all the time. The only problem so far is that my immune system is very suppressed. I had a bad flare-up of herpes simplex 1 in August which resulted in double pneumonia which could have been caused by my suppressed immune system. It's always a trade-off. They might put me on an anti-viral during high-stress periods (like an upcoming surgery) to prevent another recurrence of the virus. I hope you find as much success as I have had with Remicade. Best of luck. - Windows Live Hotmail and Microsoft Office Outlook – together at last. Get it now! Climb to the top of the charts! Play Star Shuffle: the word scramble challenge with star power. Play Now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2008 Report Share Posted April 17, 2008 Wonderful! Im praying!Marla Bramer wrote: Well I will finally get started on Remicade, we are paying for it, and still fighting the Insurance company on it, but at least we are finally moving forward. I am excited and nervous, it will be this coming Friday afternoon, so keep me in your thoughts positive thoughts, thank you so much. Marla -- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2008 Report Share Posted April 17, 2008 Wonderful! Im praying!Marla Bramer wrote: Well I will finally get started on Remicade, we are paying for it, and still fighting the Insurance company on it, but at least we are finally moving forward. I am excited and nervous, it will be this coming Friday afternoon, so keep me in your thoughts positive thoughts, thank you so much. Marla -- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 > > I dont know about Remicade. My Neurologist didnt mention it to me last > time I saw him. Can some one tell me about it > Hi , I used Remicade two years ago for 8months until until i had an anaphylactic reaction during my 5th infusion. Generally its a good med for neuro sarcoidosis. Good luck Quote Link to comment Share on other sites More sharing options...
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