Guest guest Posted December 29, 2003 Report Share Posted December 29, 2003 Marla, I just had my second infusion of Remicade a week and a half ago. I don't know exactly how much it costs, as my insurance is picking up the tab, but I can tell you that my nurse said she was surprised that it didn't take longer than the 5 months that it took to get it approved, since it's several thousand dollars for each infusion. If that is the case, then I imagine that it would be around $16,000-$20,000 per year without insurance. Of course, that's just a rough estimate based on what my nurse said. And she could have very well had no idea about the cost. Anyway, I hope this helps. If not, I hope someone else can give you better information. Best wishes, Neisa Remicade question I know some of you have talked about starting Remicade. How did you go about it, and do you know how much one treatment cost? Thanks, Marla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2003 Report Share Posted December 29, 2003 Guys, The figure I got was about $2500.00 to $3,000.0 per infusion. The number I have for Remicade medical info is 1-, their patient asst. line is 1-. I called week before last and they sent me the forms to fill out for financial asst should my insurance not cover the treatments. The med info line has a nurse who can answer questions and concerns. They also are putting me intouch with a clinical trial in my state- California. There is alot of info out there-- if you're willing to make the call. If it's gonna be real technical, I put my sister on the extension so we can both get the info-- and so that i can have her explain what my brain didn't comprehend. Aisha is so rright-- we get bombarded with suggestions from all resources-- some we've never even met online. Family will say- have you tried xyz, friends will say to meditate (which does help), some well wishers will tell you its your faith or lack of faith, but everyone has an opinion. We owe it to ourselves to get the best info available. And yep, we may end up as part of a clinical trial to see if something works. If it does- our quality of life may become so much richer, if it doesn't then ultimately, we will see our health diminish-- or stay status quo. Speaking for myself-- status quo is not where I plan on being. With compassion for all of us- this is a difficult journey. Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2003 Report Share Posted December 29, 2003 Hi Lora, Welcome! >>its expensive. he figured that it would be $12,000.00 a time Yeah, that's about right. Sucks huh? Good luck with your mum. Love isha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2003 Report Share Posted December 29, 2003 Hi Lora, Welcome! >>its expensive. he figured that it would be $12,000.00 a time Yeah, that's about right. Sucks huh? Good luck with your mum. Love isha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 I started in July through recommendation of my immunologist and confirmation by Dr. Baughman. I believe a small dose is about $1100. Luckily, since I have the infusion at IU hospital, it is covered 100% by my insurance. I do think, however, that the various simultaneous studies (both at Univ of Cincinatti and IU) are still accepting people and then the meds would be free. Marla Bramer wrote: I know some of you have talked about starting Remicade. How did you go about it, and do you know how much one treatment cost? Thanks, Marla ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Dr.Baughman told me I would be looking at $5000.00 a pop for this treatment if and when needed. Sharon Re: Remicade question Hi Lora, Welcome! >>its expensive. he figured that it would be $12,000.00 a time Yeah, that's about right. Sucks huh? Good luck with your mum. Love isha~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 I can not believe how expense this medication is! But if it's the drug that puts Sarcoid into remission, it's worth it. I just don't know if the insurance companies would be willing to pay? thanks, Sharon, I hope you have a Happy New Year! Marla Re: Remicade question Hi Lora, Welcome! >>its expensive. he figured that it would be $12,000.00 a time Yeah, that's about right. Sucks huh? Good luck with your mum. Love isha~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 , How do I get the numbers for those studies, do you know. I've been talking to a gal in Cleveland, but it's a double blind study. Thanks, Marla Re: Remicade question I started in July through recommendation of my immunologist and confirmation by Dr. Baughman. I believe a small dose is about $1100. Luckily, since I have the infusion at IU hospital, it is covered 100% by my insurance. I do think, however, that the various simultaneous studies (both at Univ of Cincinatti and IU) are still accepting people and then the meds would be free.Marla Bramer wrote: I know some of you have talked about starting Remicade. How did you go about it, and do you know how much one treatment cost? Thanks, Marla~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 You to Marla. I am hoping it would be less by now. Sharon Re: Remicade question Hi Lora, Welcome! >>its expensive. he figured that it would be $12,000.00 a time Yeah, that's about right. Sucks huh? Good luck with your mum. Love isha~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Hi Marla. My Rheumatologist just filled out the paperwork to send to my insurance company about two weeks ago. He told me at the time the treatments were approximately $4000 each. I'm waiting to hear now (I suppose the holidays slowed everything down) if they will approve it or not. He's really pushing it for me since he thinks its the best drug for my condition at this point. Personally, I am praying that it will go thru because I am getting to the point where I can't stand the pain anymore and will try anything. Debbie T. PS And yes, I have been to the website and have weighed the pro's and con's. I have talked to my drs and thought about it and have decided what have I got to lose? > I know some of you have talked about starting Remicade. How did you go about it, and do you know how much one treatment cost? > Thanks, > Marla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Marla, awhile back I posted a message about a website which gives info on funding for various drugs, including Remicade. I think it was called rxhope, or hoperx, something like that. I'll try to find it. There are many resources for getting needed drug therapy, when insurance or finances are barriers. I was also given info on a website called nursehouse something, which gives all kinds of financial help to nurses. I'll look for that info also. Rose Re: Remicade question > > > > Hi Marla. My Rheumatologist just filled out the paperwork to send > > to my insurance company about two weeks ago. He told me at the time > > the treatments were approximately $4000 each. I'm waiting to hear > > now (I suppose the holidays slowed everything down) if they will > > approve it or not. He's really pushing it for me since he thinks > > its the best drug for my condition at this point. Personally, I am > > praying that it will go thru because I am getting to the point where > > I can't stand the pain anymore and will try anything. > > Debbie T. > > PS And yes, I have been to the website and have weighed the pro's > > and con's. I have talked to my drs and thought about it and have > > decided what have I got to lose? > > > > > > > > > I know some of you have talked about starting Remicade. How did > > you go about it, and do you know how much one treatment cost? > > > Thanks, > > > Marla > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > Live Group Chat:- > > Mondays & Fridays 10pm EST USA > > http://www.elderwyn.com/neurosarcoidosis/chat.php > > > > Message Archives:- > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > Members Database:- > > Listings of locations, phone numbers, and instant messengers. > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Debbie, I'm with you, I've read it all, and I'm thinking OK, can it be worse then letting this crazy disease get worse. I talked with one of my friends a Doctor, and he has a guy on Remicade for Chrons disease, and said he doing awesome. I told him my conerns, and he reminded me that any drug could possible harm you, we just don't know. But the good number far out weigh the bad numbers. He encouraged me to go for it. I will see my doc this next week and we can talk about it some more, then check into payment regarding insurance. Thanks for sharing, and hang in there, I would start it right now if I had the chance!! Deb, where is you pain? and where all has your Sarc invaded? Take care, Love and Prayers, Marla Re: Remicade question > Hi Marla. My Rheumatologist just filled out the paperwork to send > to my insurance company about two weeks ago. He told me at the time > the treatments were approximately $4000 each. I'm waiting to hear > now (I suppose the holidays slowed everything down) if they will > approve it or not. He's really pushing it for me since he thinks > its the best drug for my condition at this point. Personally, I am > praying that it will go thru because I am getting to the point where > I can't stand the pain anymore and will try anything. > Debbie T. > PS And yes, I have been to the website and have weighed the pro's > and con's. I have talked to my drs and thought about it and have > decided what have I got to lose? > > > > > I know some of you have talked about starting Remicade. How did > you go about it, and do you know how much one treatment cost? > > Thanks, > > Marla > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Marla, those websites are www.rxhope.com and www.NursesHouse.org. Hope these are useful. Rose Re: Remicade question > > > > Hi Marla. My Rheumatologist just filled out the paperwork to send > > to my insurance company about two weeks ago. He told me at the time > > the treatments were approximately $4000 each. I'm waiting to hear > > now (I suppose the holidays slowed everything down) if they will > > approve it or not. He's really pushing it for me since he thinks > > its the best drug for my condition at this point. Personally, I am > > praying that it will go thru because I am getting to the point where > > I can't stand the pain anymore and will try anything. > > Debbie T. > > PS And yes, I have been to the website and have weighed the pro's > > and con's. I have talked to my drs and thought about it and have > > decided what have I got to lose? > > > > > > > > > I know some of you have talked about starting Remicade. How did > > you go about it, and do you know how much one treatment cost? > > > Thanks, > > > Marla > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > Live Group Chat:- > > Mondays & Fridays 10pm EST USA > > http://www.elderwyn.com/neurosarcoidosis/chat.php > > > > Message Archives:- > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > Members Database:- > > Listings of locations, phone numbers, and instant messengers. > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Faith makes all things possible,Love makes it easy! Janjanbovi@... Powered by Plaxo Want a signature like this? Add me to your address book... Debbie, I didn't know you were going to try the Remicade too. I was just wandering if maybe if it would be a good choice for me too.?I have constant pain all over my body especially the headaches and neck and back pain and then all the joint pain well what can I say my body is just one big source of pain........lol The morphine is starting to not work anymore. I have been waking up with htese night sweats lately too. Any info would be appreciated folks. Happy New Year......................... Jan ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.542 / Virus Database: 336 - Release Date: 11/18/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Hi Marla. Good to hear from you. I hope you had a good Christmas and New Years. Right now I'm ready to try anything myself after another night of not sleeping from pain!! LOL Seriously, they first found the sarc in a biopsy of a subcutaneous tumor on my arm which appeared out of nowhere last March. I then started having the rest of the all over body aches and pains, severe headaches, joint pain, etc. So I have sarc skin involvement and joint involvement, but I have a lot of the neurological symptoms as well , even though I had an EMG, lumbar puncture and brain MRI that were negative. I still see the neurologist though for tremors, cervical myelopathy and he's keeping a watch on the other neurological symptoms as well which potentially may be neurosarcoid. The pain - I don't know where to begin! It starts at the top of my head (with splitting headaches) down thru my neck and shoulders, shooting pain down my arms and legs, hands and feet, joints, back and even my butt sometime! (Talk about a literal pain in the ass! You can ask my husband about that one!) It seems like it hurts everywhere. I have asthma since childhood and am on all kinds of drugs for that since I've been a kid. I sometimes wonder if that was sarc related at all? I was even gonna ask, but was kind of embarrased , if anyone has had allover breast pain, not at certain parts of the month either, I mean almost all the time???? Sorry Ron & Quint, don't know if you can answer that one!! LOL But I was also diagnosed with Fibro last Sept with most of the pain points and lately my Rheumy has been talking possible Psoriatic or Rhuematoid Arthritis. They tested me for RA last spring though. I have had so many conflicting opinions from so many drs. I just want some PAIN RELIEF! Sorry to run on so , I guess you started me on a tangent! Let me know if your insurance comes thru for you. That is the tough part! Luv, Debbie T. > > > I know some of you have talked about starting Remicade. How did > > you go about it, and do you know how much one treatment cost? > > > Thanks, > > > Marla > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > Live Group Chat:- > > Mondays & Fridays 10pm EST USA > > http://www.elderwyn.com/neurosarcoidosis/chat.php > > > > Message Archives:- > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > Members Database:- > > Listings of locations, phone numbers, and instant messengers. > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 HI Jan. Yeah, my Rheumy talked about it in Nov. and gave me a bunch of info to look over on Remicade during that appt. (That's when he raised my Methotrexate a bit because it didn't seem to be helping at all. Well, my pain and discomfort was just getting worse and worse and I kept calling him. He put me on Pred and it didn't do much. That was a big step for me! I hate steroids! He wouldn't prescribe any pain med since this whole thing started. He says he doesn't like to see anyone get dependent upon them. Then I finally went into his office crying one day because of the pain , and he started the paperwork for Insurance for the Remicade. (In the meantime he gave me Darvocet, because I pleaded for something to take the edge off in the meantime. Well, needless to say, it doesn't help at all!) So now Im waiting again. Talk to your dr. about it. Everyone's case is different. I have 4 drs to consult with. Good luck. I hope everything is going okay with you and the kids. Luv, Debbie sarcoidosis , " Mimi " <janbovi@b...> wrote: > > Faith makes all things possible,Love makes it easy! > > Jan > janbovi@b... > > > > Powered by Plaxo Want a signature like this? > > Add me to your address book... > > Debbie, > I didn't know you were going to try the Remicade too. I was just wandering if maybe if it would be a good choice for me too.?I have constant pain all over my body especially the headaches and neck and back pain and then all the joint pain well what can I say my body is just one big source of pain........lol The morphine is starting to not work anymore. > I have been waking up with htese night sweats lately too. > Any info would be appreciated folks. > Happy New Year......................... > Jan > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.542 / Virus Database: 336 - Release Date: 11/18/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Debbie, I cannot believe that they are still not giving you anything for pain. Honestly you need another doctor. I believe it was Tracie or Aisha who wrote a whole post on pain management and how you are not addicted to them if you need them just to function. Ask forTramadol or Ultracet or something...just to take the edge off so you can sleep and get through the day without losing your mind. I honestly wonder, myself, about all these fibro diagnoses or if it is just sarc. Almost everybody with sarc gets told they have fibro, too, cuz sarc shouldn't be causing this much pain. Then they try to concentrate on relieving that and sarc gets put on the back burner. I also have asthma and have wondered if it is just really sarc-related. I've read that you can have sarc a long time before it manifests enough for the doctors to see it. At least with the fibro diagnosis they should be giving you pain meds. I also have breast pain and all-over hormone problems. Hey listen...I've had those butt pains for years and wondered what that was all about. I haven't told too many people about that. Is it like a shooting knife going up your butt? That's what mine is like. I did have a non-cancerous growth removed but didn't have it tested for sarc cuz that was before I was diagnosed. Maybe a google search on pain management could turn up something to take to your doctor. Keep bringing it up to them or see another doctor. hugs and prayers S.Debbie wrote: Hi Marla. Good to hear from you. I hope you had a good Christmas and New Years.Right now I'm ready to try anything myself after another night of not sleeping from pain!! LOLSeriously, they first found the sarc in a biopsy of a subcutaneous tumor on my arm which appeared out of nowhere last March. I then started having the rest of the all over body aches and pains, severe headaches, joint pain, etc. So I have sarc skin involvement and joint involvement, but I have a lot of the neurological symptoms as well , even though I had an EMG, lumbar puncture and brain MRI that were negative. I still see the neurologist though for tremors, cervical myelopathy and he's keeping a watch on the other neurological symptoms as well which potentially may be neurosarcoid.The pain - I don't know where to begin! It starts at the top of my head (with splitting headaches) down thru my neck and shoulders, shooting pain down my arms and legs, hands and feet, joints, back and even my butt sometime! (Talk about a literal pain in the ass! You can ask my husband about that one!) It seems like it hurts everywhere. I have asthma since childhood and am on all kinds of drugs for that since I've been a kid. I sometimes wonder if that was sarc related at all?I was even gonna ask, but was kind of embarrased , if anyone has had allover breast pain, not at certain parts of the month either, I mean almost all the time???? Sorry Ron & Quint, don't know if you can answer that one!! LOLBut I was also diagnosed with Fibro last Sept with most of the pain points and lately my Rheumy has been talking possible Psoriatic or Rhuematoid Arthritis. They tested me for RA last spring though. I have had so many conflicting opinions from so many drs. I just want some PAIN RELIEF! Sorry to run on so , I guess you started me on a tangent! Let me know if your insurance comes thru for you. That is the tough part! Luv, Debbie T.> > > I know some of you have talked about starting Remicade. How did> > you go about it, and do you know how much one treatment cost?> > > Thanks,> > > Marla> >> >> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > The Neurosarcoidosis Community> >> > Live Group Chat:-> > Mondays & Fridays 10pm EST USA> > http://www.elderwyn.com/neurosarcoidosis/chat.php> >> > Message Archives:-> > http://groups.yahoo.com/group/Neurosarcoidosis/messages> >> > Members Database:-> > Listings of locations, phone numbers, and instant messengers.> > http://groups.yahoo.com/group/Neurosarcoidosis/database> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Debbie, I cannot believe that they are still not giving you anything for pain. Honestly you need another doctor. I believe it was Tracie or Aisha who wrote a whole post on pain management and how you are not addicted to them if you need them just to function. Ask forTramadol or Ultracet or something...just to take the edge off so you can sleep and get through the day without losing your mind. I honestly wonder, myself, about all these fibro diagnoses or if it is just sarc. Almost everybody with sarc gets told they have fibro, too, cuz sarc shouldn't be causing this much pain. Then they try to concentrate on relieving that and sarc gets put on the back burner. I also have asthma and have wondered if it is just really sarc-related. I've read that you can have sarc a long time before it manifests enough for the doctors to see it. At least with the fibro diagnosis they should be giving you pain meds. I also have breast pain and all-over hormone problems. Hey listen...I've had those butt pains for years and wondered what that was all about. I haven't told too many people about that. Is it like a shooting knife going up your butt? That's what mine is like. I did have a non-cancerous growth removed but didn't have it tested for sarc cuz that was before I was diagnosed. Maybe a google search on pain management could turn up something to take to your doctor. Keep bringing it up to them or see another doctor. hugs and prayers S.Debbie wrote: Hi Marla. Good to hear from you. I hope you had a good Christmas and New Years.Right now I'm ready to try anything myself after another night of not sleeping from pain!! LOLSeriously, they first found the sarc in a biopsy of a subcutaneous tumor on my arm which appeared out of nowhere last March. I then started having the rest of the all over body aches and pains, severe headaches, joint pain, etc. So I have sarc skin involvement and joint involvement, but I have a lot of the neurological symptoms as well , even though I had an EMG, lumbar puncture and brain MRI that were negative. I still see the neurologist though for tremors, cervical myelopathy and he's keeping a watch on the other neurological symptoms as well which potentially may be neurosarcoid.The pain - I don't know where to begin! It starts at the top of my head (with splitting headaches) down thru my neck and shoulders, shooting pain down my arms and legs, hands and feet, joints, back and even my butt sometime! (Talk about a literal pain in the ass! You can ask my husband about that one!) It seems like it hurts everywhere. I have asthma since childhood and am on all kinds of drugs for that since I've been a kid. I sometimes wonder if that was sarc related at all?I was even gonna ask, but was kind of embarrased , if anyone has had allover breast pain, not at certain parts of the month either, I mean almost all the time???? Sorry Ron & Quint, don't know if you can answer that one!! LOLBut I was also diagnosed with Fibro last Sept with most of the pain points and lately my Rheumy has been talking possible Psoriatic or Rhuematoid Arthritis. They tested me for RA last spring though. I have had so many conflicting opinions from so many drs. I just want some PAIN RELIEF! Sorry to run on so , I guess you started me on a tangent! Let me know if your insurance comes thru for you. That is the tough part! Luv, Debbie T.> > > I know some of you have talked about starting Remicade. How did> > you go about it, and do you know how much one treatment cost?> > > Thanks,> > > Marla> >> >> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > The Neurosarcoidosis Community> >> > Live Group Chat:-> > Mondays & Fridays 10pm EST USA> > http://www.elderwyn.com/neurosarcoidosis/chat.php> >> > Message Archives:-> > http://groups.yahoo.com/group/Neurosarcoidosis/messages> >> > Members Database:-> > Listings of locations, phone numbers, and instant messengers.> > http://groups.yahoo.com/group/Neurosarcoidosis/database> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Rose, Thank you! I am behind on my emails as you can see. I appreciate your help, I will try to look them up with the info you gave me too. Happy New Year. Marla Re: Remicade question > > > > > > > Hi Marla. My Rheumatologist just filled out the paperwork to send > > > to my insurance company about two weeks ago. He told me at the time > > > the treatments were approximately $4000 each. I'm waiting to hear > > > now (I suppose the holidays slowed everything down) if they will > > > approve it or not. He's really pushing it for me since he thinks > > > its the best drug for my condition at this point. Personally, I am > > > praying that it will go thru because I am getting to the point where > > > I can't stand the pain anymore and will try anything. > > > Debbie T. > > > PS And yes, I have been to the website and have weighed the pro's > > > and con's. I have talked to my drs and thought about it and have > > > decided what have I got to lose? > > > > > > > > > > > > > I know some of you have talked about starting Remicade. How did > > > you go about it, and do you know how much one treatment cost? > > > > Thanks, > > > > Marla > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > The Neurosarcoidosis Community > > > > > > Live Group Chat:- > > > Mondays & Fridays 10pm EST USA > > > http://www.elderwyn.com/neurosarcoidosis/chat.php > > > > > > Message Archives:- > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > > Members Database:- > > > Listings of locations, phone numbers, and instant messengers. > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Rose, Thank you! I am behind on my emails as you can see. I appreciate your help, I will try to look them up with the info you gave me too. Happy New Year. Marla Re: Remicade question > > > > > > > Hi Marla. My Rheumatologist just filled out the paperwork to send > > > to my insurance company about two weeks ago. He told me at the time > > > the treatments were approximately $4000 each. I'm waiting to hear > > > now (I suppose the holidays slowed everything down) if they will > > > approve it or not. He's really pushing it for me since he thinks > > > its the best drug for my condition at this point. Personally, I am > > > praying that it will go thru because I am getting to the point where > > > I can't stand the pain anymore and will try anything. > > > Debbie T. > > > PS And yes, I have been to the website and have weighed the pro's > > > and con's. I have talked to my drs and thought about it and have > > > decided what have I got to lose? > > > > > > > > > > > > > I know some of you have talked about starting Remicade. How did > > > you go about it, and do you know how much one treatment cost? > > > > Thanks, > > > > Marla > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > The Neurosarcoidosis Community > > > > > > Live Group Chat:- > > > Mondays & Fridays 10pm EST USA > > > http://www.elderwyn.com/neurosarcoidosis/chat.php > > > > > > Message Archives:- > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > > Members Database:- > > > Listings of locations, phone numbers, and instant messengers. > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Rose, as you can see, I am trying to catch up. Thank you so much, I will check them out. marla Re: Remicade question > > > > > > > Hi Marla. My Rheumatologist just filled out the paperwork to send > > > to my insurance company about two weeks ago. He told me at the time > > > the treatments were approximately $4000 each. I'm waiting to hear > > > now (I suppose the holidays slowed everything down) if they will > > > approve it or not. He's really pushing it for me since he thinks > > > its the best drug for my condition at this point. Personally, I am > > > praying that it will go thru because I am getting to the point where > > > I can't stand the pain anymore and will try anything. > > > Debbie T. > > > PS And yes, I have been to the website and have weighed the pro's > > > and con's. I have talked to my drs and thought about it and have > > > decided what have I got to lose? > > > > > > > > > > > > > I know some of you have talked about starting Remicade. How did > > > you go about it, and do you know how much one treatment cost? > > > > Thanks, > > > > Marla > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > The Neurosarcoidosis Community > > > > > > Live Group Chat:- > > > Mondays & Fridays 10pm EST USA > > > http://www.elderwyn.com/neurosarcoidosis/chat.php > > > > > > Message Archives:- > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > > Members Database:- > > > Listings of locations, phone numbers, and instant messengers. > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Rose, as you can see, I am trying to catch up. Thank you so much, I will check them out. marla Re: Remicade question > > > > > > > Hi Marla. My Rheumatologist just filled out the paperwork to send > > > to my insurance company about two weeks ago. He told me at the time > > > the treatments were approximately $4000 each. I'm waiting to hear > > > now (I suppose the holidays slowed everything down) if they will > > > approve it or not. He's really pushing it for me since he thinks > > > its the best drug for my condition at this point. Personally, I am > > > praying that it will go thru because I am getting to the point where > > > I can't stand the pain anymore and will try anything. > > > Debbie T. > > > PS And yes, I have been to the website and have weighed the pro's > > > and con's. I have talked to my drs and thought about it and have > > > decided what have I got to lose? > > > > > > > > > > > > > I know some of you have talked about starting Remicade. How did > > > you go about it, and do you know how much one treatment cost? > > > > Thanks, > > > > Marla > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > The Neurosarcoidosis Community > > > > > > Live Group Chat:- > > > Mondays & Fridays 10pm EST USA > > > http://www.elderwyn.com/neurosarcoidosis/chat.php > > > > > > Message Archives:- > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > > Members Database:- > > > Listings of locations, phone numbers, and instant messengers. > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 My old family doctor hated me on Vicoden so he put me back on Ultram for my back. Ultram never worked for me and the Vicoden did the trick. I am taking 4 a day because of the pain level. The two that were mentioned in the post are good also, but do not mix with all meds. You need what is best for you. Talk to your doctor again and if he/she still will not give you what you are needing, FIND a NEW DOCTOR. I did and WOW is she terrific. Sharon Re: Re: Remicade question Debbie, I cannot believe that they are still not giving you anything for pain. Honestly you need another doctor. I believe it was Tracie or Aisha who wrote a whole post on pain management and how you are not addicted to them if you need them just to function. Ask forTramadol or Ultracet or something...just to take the edge off so you can sleep and get through the day without losing your mind. I honestly wonder, myself, about all these fibro diagnoses or if it is just sarc. Almost everybody with sarc gets told they have fibro, too, cuz sarc shouldn't be causing this much pain. Then they try to concentrate on relieving that and sarc gets put on the back burner. I also have asthma and have wondered if it is just really sarc-related. I've read that you can have sarc a long time before it manifests enough for the doctors to see it. At least with the fibro diagnosis they should be giving you pain meds. I also have breast pain and all-over hormone problems. Hey listen...I've had those butt pains for years and wondered what that was all about. I haven't told too many people about that. Is it like a shooting knife going up your butt? That's what mine is like. I did have a non-cancerous growth removed but didn't have it tested for sarc cuz that was before I was diagnosed. Maybe a google search on pain management could turn up something to take to your doctor. Keep bringing it up to them or see another doctor. hugs and prayers S.Debbie wrote: Hi Marla. Good to hear from you. I hope you had a good Christmas and New Years.Right now I'm ready to try anything myself after another night of not sleeping from pain!! LOLSeriously, they first found the sarc in a biopsy of a subcutaneous tumor on my arm which appeared out of nowhere last March. I then started having the rest of the all over body aches and pains, severe headaches, joint pain, etc. So I have sarc skin involvement and joint involvement, but I have a lot of the neurological symptoms as well , even though I had an EMG, lumbar puncture and brain MRI that were negative. I still see the neurologist though for tremors, cervical myelopathy and he's keeping a watch on the other neurological symptoms as well which potentially may be neurosarcoid.The pain - I don't know where to begin! It starts at the top of my head (with splitting headaches) down thru my neck and shoulders, shooting pain down my arms and legs, hands and feet, joints, back and even my butt sometime! (Talk about a literal pain in the ass! You can ask my husband about that one!) It seems like it hurts everywhere. I have asthma since childhood and am on all kinds of drugs for that since I've been a kid. I sometimes wonder if that was sarc related at all?I was even gonna ask, but was kind of embarrased , if anyone has had allover breast pain, not at certain parts of the month either, I mean almost all the time???? Sorry Ron & Quint, don't know if you can answer that one!! LOLBut I was also diagnosed with Fibro last Sept with most of the pain points and lately my Rheumy has been talking possible Psoriatic or Rhuematoid Arthritis. They tested me for RA last spring though. I have had so many conflicting opinions from so many drs. I just want some PAIN RELIEF! Sorry to run on so , I guess you started me on a tangent! Let me know if your insurance comes thru for you. That is the tough part! Luv, Debbie T.> > > I know some of you have talked about starting Remicade. How did> > you go about it, and do you know how much one treatment cost?> > > Thanks,> > > Marla> >> >> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > The Neurosarcoidosis Community> >> > Live Group Chat:-> > Mondays & Fridays 10pm EST USA> > http://www.elderwyn.com/neurosarcoidosis/chat.php> >> > Message Archives:-> > http://groups.yahoo.com/group/Neurosarcoidosis/messages> >> > Members Database:-> > Listings of locations, phone numbers, and instant messengers.> > http://groups.yahoo.com/group/Neurosarcoidosis/database> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 My old family doctor hated me on Vicoden so he put me back on Ultram for my back. Ultram never worked for me and the Vicoden did the trick. I am taking 4 a day because of the pain level. The two that were mentioned in the post are good also, but do not mix with all meds. You need what is best for you. Talk to your doctor again and if he/she still will not give you what you are needing, FIND a NEW DOCTOR. I did and WOW is she terrific. Sharon Re: Re: Remicade question Debbie, I cannot believe that they are still not giving you anything for pain. Honestly you need another doctor. I believe it was Tracie or Aisha who wrote a whole post on pain management and how you are not addicted to them if you need them just to function. Ask forTramadol or Ultracet or something...just to take the edge off so you can sleep and get through the day without losing your mind. I honestly wonder, myself, about all these fibro diagnoses or if it is just sarc. Almost everybody with sarc gets told they have fibro, too, cuz sarc shouldn't be causing this much pain. Then they try to concentrate on relieving that and sarc gets put on the back burner. I also have asthma and have wondered if it is just really sarc-related. I've read that you can have sarc a long time before it manifests enough for the doctors to see it. At least with the fibro diagnosis they should be giving you pain meds. I also have breast pain and all-over hormone problems. Hey listen...I've had those butt pains for years and wondered what that was all about. I haven't told too many people about that. Is it like a shooting knife going up your butt? That's what mine is like. I did have a non-cancerous growth removed but didn't have it tested for sarc cuz that was before I was diagnosed. Maybe a google search on pain management could turn up something to take to your doctor. Keep bringing it up to them or see another doctor. hugs and prayers S.Debbie wrote: Hi Marla. Good to hear from you. I hope you had a good Christmas and New Years.Right now I'm ready to try anything myself after another night of not sleeping from pain!! LOLSeriously, they first found the sarc in a biopsy of a subcutaneous tumor on my arm which appeared out of nowhere last March. I then started having the rest of the all over body aches and pains, severe headaches, joint pain, etc. So I have sarc skin involvement and joint involvement, but I have a lot of the neurological symptoms as well , even though I had an EMG, lumbar puncture and brain MRI that were negative. I still see the neurologist though for tremors, cervical myelopathy and he's keeping a watch on the other neurological symptoms as well which potentially may be neurosarcoid.The pain - I don't know where to begin! It starts at the top of my head (with splitting headaches) down thru my neck and shoulders, shooting pain down my arms and legs, hands and feet, joints, back and even my butt sometime! (Talk about a literal pain in the ass! You can ask my husband about that one!) It seems like it hurts everywhere. I have asthma since childhood and am on all kinds of drugs for that since I've been a kid. I sometimes wonder if that was sarc related at all?I was even gonna ask, but was kind of embarrased , if anyone has had allover breast pain, not at certain parts of the month either, I mean almost all the time???? Sorry Ron & Quint, don't know if you can answer that one!! LOLBut I was also diagnosed with Fibro last Sept with most of the pain points and lately my Rheumy has been talking possible Psoriatic or Rhuematoid Arthritis. They tested me for RA last spring though. I have had so many conflicting opinions from so many drs. I just want some PAIN RELIEF! Sorry to run on so , I guess you started me on a tangent! Let me know if your insurance comes thru for you. That is the tough part! Luv, Debbie T.> > > I know some of you have talked about starting Remicade. How did> > you go about it, and do you know how much one treatment cost?> > > Thanks,> > > Marla> >> >> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > The Neurosarcoidosis Community> >> > Live Group Chat:-> > Mondays & Fridays 10pm EST USA> > http://www.elderwyn.com/neurosarcoidosis/chat.php> >> > Message Archives:-> > http://groups.yahoo.com/group/Neurosarcoidosis/messages> >> > Members Database:-> > Listings of locations, phone numbers, and instant messengers.> > http://groups.yahoo.com/group/Neurosarcoidosis/database> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Hi : Your right, my rheumatologist is trying to treat the fibro more than the sarcoid or RA or PA or whatever he thinks it is. And he tells me there's nothing he can give me to help Fibro pain. He seems to be very much against pain meds. The last time I was in to see him, I was crying because I was so frustrated and he finally did end up prescribing Darvocet (but I had to practically beg for that!) and honestly it doesn't even work for me. I take 3 pills even and all it does is knock me out. So I sleep all the time. All my PCP wants to do is put me on Prednisone which I refuse. (He's a pulmonologist and goes by the old school - " you treat Sarcoid with steroids " . The pain in my butt (which my husband thinks I AM a pain in the butt literally but that's a whole different story..LOL!) is in the lower part right kinda right where you sit, just about where the back of your legs are. It may be a Fibro pain point, I don't know. I tried looking for another Rheumatologist in my area and there aren't any really close in order for my insurance to cover it. He's an " out of area " dr already. But I have considered finding another one, believe me. It's getting to that point. Anyway I have an appt with my Rheumy this week and another with my Neuro in a couple of weeks, so we'll see what happens. I will keep you posted. Thanks for your concern. I appreciate it. Luv, Debbie > > > > I know some of you have talked about starting Remicade. How > did > > > you go about it, and do you know how much one treatment cost? > > > > Thanks, > > > > Marla > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > The Neurosarcoidosis Community > > > > > > Live Group Chat:- > > > Mondays & Fridays 10pm EST USA > > > http://www.elderwyn.com/neurosarcoidosis/chat.php > > > > > > Message Archives:- > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > > Members Database:- > > > Listings of locations, phone numbers, and instant messengers. > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > Quote Link to comment Share on other sites More sharing options...
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