Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Thanks Sharon for the input. I am just about to that point of doing some " new dr. research " . 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...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Debbie, are you taking anything " like " Neurontin for pain? That really works for me, I take 800 mgs three times a day, and 100mgs as needed in between. and when that doesn't work I throw in a vicodin! The pain just wears on a person!! Hope you have a healthy, painless, New Year! Marla Re: Remicade question > 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 4, 2004 Report Share Posted January 4, 2004 , I think you have something. I agree everything could be related to Sarc. My dr. said once he wondered if I had Chronic fatigue syndrome, and/or fibro, and I said "Hey don't go there, I'm sure it is all related to Sarc". I went through a lupus thing, when I got an ugly Rash and had to see a Derm, in the end we decided it was Sarc. I do believe that Sarc can do ALL of this!! Marla 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 Please Marla and others be careful of this drug. I am learning more and more about Neurontin's misrepresentation to all the doctors by the drug company. If you have week legs be very careful one of the side affects is nerve problems. I am glad that a few of you can take this drug. Sharon Re: Remicade question> 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 5, 2004 Report Share Posted January 5, 2004 Sharon you are right as with any drugs. If you get weak legs your dose is too high and you need to lower it. I've had that a couple of times, and had to cut back on my dose. Also, I know there are some that can't take this drug at all!! Good caution. For me it's a lifesaver, for others, it could be the oppisite, so do be careful with this drug. Thanks Sharon, we sometimes forget to add the "rest of the story" in, and just want everyone to know how great it was for us!! Love and prayers, Marla Re: Remicade question> 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 5, 2004 Report Share Posted January 5, 2004 Hi Marla, Yes , I take Neurontin 1600 mg day and it doesn't help that much. My neuro started me on that in October. It helped a bit at first, but doesn't seem to do much. I guess its different for everyone... Thanks, Debbie In Neurosarcoidosis , " Marla Bramer " <mbramer@c...> wrote: > Debbie, > are you taking anything " like " Neurontin for pain? That really works for > me, I take 800 mgs three times a day, and 100mgs as needed in between. and > when that doesn't work I throw in a vicodin! > The pain just wears on a person!! > Hope you have a healthy, painless, New Year! > Marla > Re: Remicade question > > > > 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 5, 2004 Report Share Posted January 5, 2004 Debbie, when I got to a point where the Neurontin was not working as well, the doc increased the dose, like now I am on 800mgs three times a day, and 100mgs in between. It really helped to increase the dose, and the 100ms really help. marla Re: Remicade question > > > > > > > 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 5, 2004 Report Share Posted January 5, 2004 Debbie, when I got to a point where the Neurontin was not working as well, the doc increased the dose, like now I am on 800mgs three times a day, and 100mgs in between. It really helped to increase the dose, and the 100ms really help. marla Re: Remicade question > > > > > > > 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 5, 2004 Report Share Posted January 5, 2004 Wow, you must have an intolerance for this drug. We do have to be careful, and start slow with any new drug. Marla Re: Remicade question> 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 5, 2004 Report Share Posted January 5, 2004 Wow, you must have an intolerance for this drug. We do have to be careful, and start slow with any new drug. Marla Re: Remicade question> 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 6, 2004 Report Share Posted January 6, 2004 Elavil didn't help either. Sharon Re: Remicade question> 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...
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