Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 This is strange, I'd like to know who else has tooth sensitivity and if it has anything to do with the sarc because I've had that for a while also. I always get ice tea with the ice on the side (get strange looks all the time) and I just add in a little ice at a time. I need everyones help that has had this problem with prednisone. I've been having problems with my wife trying to get her to understand what and how the weight gain works. Maybe I'm being too technical but I've gained 50 pounds in the 4 years I've been on it. My normal dose is 10 mg but whenever I start to have an episode I go up to 40mg and down by 10 every 4-10 days depending on how bad it is. I get cravings or just eat the same foods. I can't explain it to her in a way she understands as to why I can't lose the weight and why I eat the way I do. Since being so sick the last 4 weeks I've been stopping off 4-5 times a week and buying large Wonton soups. I call it Chinese Chicken Soup. It's the only thing that seems appetizing and the only thing I want to eat. I go through cycles but can stay with the same foods for weeks or months and have a hard time eating the way I know I should and preach people to,. But the Prednisone is the worst drug I've ever been on. help me explain it to her so she understands please. G-d Bless Mitch Re: Hello? Hello? Anybody there? > > Hi Rose, > > A couple of weeks ago, I had my first Infliximab (Remicade) infusion. > I feel a little calmer inside, but am not convinced yet that there has > been any real change to the pains in back, fingers, etc. Curiously, > over the recent past, my teeth and jaws have become really sensitive to > cold, even if breathing the winter air in through an open mouth. > Anything from the fridge is painfully cold. Next infusion is on 01 Dec, > so we'll see if that makes the difference. Still on 20mgs Pred for the > while, together with omeprazol for the tum. > > Best regards, > > > On Mon, 15 Nov 2010 21:54:59 -0500, Rose > wrote: > & gt; Guys, this list has been way too quiet. Please check in to let us > > know how you are doing--just a quick note is fine. > > > > _)_ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 Hi Mitch, Surprisingly, Preds are about the only drug that seem to work for me. I am on 20mg daily at the moment and have been for a few months. Mind you, the idea is to stop (very slowly!) as the Remicade takes effect. The neuro warned me that the first infusion might not do too much, but that there would be a big difference after the second and third, both of which will be done by the end of the year. After that, it will be once every three months. Here's hoping. Best regards, > This is strange, I'd like to know who else has tooth sensitivity and > if it has anything to do with the sarc because I've had that for a > while also. I always get ice tea with the ice on the side (get strange > looks all the time) and I just add in a little ice at a time. > > I need everyones help that has had this problem with prednisone. I've > been having problems with my wife trying to get her to understand what > and how the weight gain works. Maybe I'm being too technical but I've > gained 50 pounds in the 4 years I've been on it. My normal dose is 10 > mg but whenever I start to have an episode I go up to 40mg and down by > 10 every 4-10 days depending on how bad it is. I get cravings or just > eat the same foods. I can't explain it to her in a way she understands > as to why I can't lose the weight and why I eat the way I do. Since > being so sick the last 4 weeks I've been stopping off 4-5 times a week > and buying large Wonton soups. I call it Chinese Chicken Soup. It's > the only thing that seems appetizing and the only thing I want to eat. > I go through cycles but can stay with the same foods for weeks or > months and ha! ve a hard time eating the way I know I should and > preach people to,. But the Prednisone is the worst drug I've ever been > on. > help me explain it to her so she understands please. > > G-d Bless > > Mitch > > Re: Hello? Hello? Anybody there? > > > > Hi Rose, > > > > A couple of weeks ago, I had my first Infliximab (Remicade) > infusion. > > I feel a little calmer inside, but am not convinced yet that there > has > > been any real change to the pains in back, fingers, etc. Curiously, > > over the recent past, my teeth and jaws have become really > sensitive to > > cold, even if breathing the winter air in through an open mouth. > > Anything from the fridge is painfully cold. Next infusion is on 01 > Dec, > > so we'll see if that makes the difference. Still on 20mgs Pred for > the > > while, together with omeprazol for the tum. > > > > Best regards, > > > > > > On Mon, 15 Nov 2010 21:54:59 -0500, Rose > > wrote: > > & gt; Guys, this list has been way too quiet. Please check in to > let us > > > know how you are doing--just a quick note is fine. > > > > > > _)_ > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 Kieth, You don't get your next Remicade until Dec, when you start you should get one infusion, the two weeks later another, then four weeks, then six weeks and every six weeks. For some it takes two to three infusions before they notice any help, for me it was right after the first infusion, and found that six weeks was too long, so I go every five weeks, and right now that's working. I am sensitive to cold, my problem is when I get a little cold, I get painfully cold, and and when I get hot I get really hot, told my thermostat is off due to NS. and I chew on ice all day, some days it will bother me and I switch to warm water, but most days I feel my glass up with crushed ice, and tea, or juice and chew up the ice while sipping the drink. I do use the sensitive toothpaste too though. So that's different for everyone I guess. give the Remicade a chance, it may or may not work for you, but I've heard some say that they didn't notice anything until after a few infusions, good luck. Marla Marla Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) Hi, . It's good to hear from you. Hopefully we'll get some input from some other Remicade users. It may vary as to how quickly you feel an improvement. That's odd about the cold sensitivity just starting. I've had that for many, many years. I use a straw for any drink with ice in it, & have to cover my mouth when it's really cold outside. Mine started way before the sarc, so I don't think there's a connection, for me at least. Using the Sensedyne toothpast has helped, and I've trained my dentist & his staff to squirt water on my tongue rather than directly on my teeth; then I can swish it around & warm it up. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Tue, 16 Nov 2010 21:20:32 +0000 > Subject: Re: Hello? Hello? Anybody there?> > Hi Rose,> > A couple of weeks ago, I had my first Infliximab (Remicade) infusion. > I feel a little calmer inside, but am not convinced yet that there has > been any real change to the pains in back, fingers, etc. Curiously,> over the recent past, my teeth and jaws have become really sensitive to> cold, even if breathing the winter air in through an open mouth. > Anything from the fridge is painfully cold. Next infusion is on 01 Dec,> so we'll see if that makes the difference. Still on 20mgs Pred for the> while, together with omeprazol for the tum.> > Best regards,> > > > > Guys, this list has been way too quiet. Please check in to let us > > know how you are doing--just a quick note is fine.> > > > _)_ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 Mitch, I totally hear you, over the years of Pred. and other medication I have gained over 40 lbs, and have trouble losing it, and my husband thinks I can just stop taking my Lyerica because after I lost 15 lbs, I gained it back after starting Lyerica, so he says go off it and you'll lose the week, he doesn't get it, I have terrible nerve pain, and it's been great for me. As for the cravings when I'm on Pred. Chips I love chips and ice cream, although I love ice cream all the time:) I'm so well known at our Dairy Queen, that I got a free blizzard, lol. I don't know how to explain it, but it's real, that I do know. When I get my IV steroid bursts I stop at the store on the way home, and bring a bunch of junk home, it's just the way it is. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) This is strange, I'd like to know who else has tooth sensitivity and if it has anything to do with the sarc because I've had that for a while also. I always get ice tea with the ice on the side (get strange looks all the time) and I just add in a little ice at a time. I need everyones help that has had this problem with prednisone. I've been having problems with my wife trying to get her to understand what and how the weight gain works. Maybe I'm being too technical but I've gained 50 pounds in the 4 years I've been on it. My normal dose is 10 mg but whenever I start to have an episode I go up to 40mg and down by 10 every 4-10 days depending on how bad it is. I get cravings or just eat the same foods. I can't explain it to her in a way she understands as to why I can't lose the weight and why I eat the way I do. Since being so sick the last 4 weeks I've been stopping off 4-5 times a week and buying large Wonton soups. I call it Chinese Chicken Soup. It's the only thing that seems appetizing and the only thing I want to eat. I go through cycles but can stay with the same foods for weeks or months and have a hard time eating the way I know I should and preach people to,. But the Prednisone is the worst drug I've ever been on. help me explain it to her so she understands please. G-d Bless Mitch Re: Hello? Hello? Anybody there? > > Hi Rose, > > A couple of weeks ago, I had my first Infliximab (Remicade) infusion. > I feel a little calmer inside, but am not convinced yet that there has > been any real change to the pains in back, fingers, etc. Curiously, > over the recent past, my teeth and jaws have become really sensitive to > cold, even if breathing the winter air in through an open mouth. > Anything from the fridge is painfully cold. Next infusion is on 01 Dec, > so we'll see if that makes the difference. Still on 20mgs Pred for the > while, together with omeprazol for the tum. > > Best regards, > > > On Mon, 15 Nov 2010 21:54:59 -0500, Rose > wrote: > & gt; Guys, this list has been way too quiet. Please check in to let us > > know how you are doing--just a quick note is fine. > > > > _)_ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2010 Report Share Posted November 18, 2010 MArla, I guess my neuro is a bit more conservative. I am to have the infusions at 0 weeks, 4 weeks, 8 weeks and then three monthly thereafter. I am assuming from what I have read that Infliximab, which is what I am getting, is the UK name for Remicade. One thing I do know is that it is extraordinarily expensive. Thanks for saying that sometimes it takes a few tanks full for the effect to be felt. It confirms what the neuro was saying, that it would be Christmas before I felt good, but I would indeed feel good by then. God bless, On Wed, 17 Nov 2010 18:26:01 -0700, Marla Bramer wrote: > Kieth, > You don't get your next Remicade until Dec, when you start you > should get one infusion, the two weeks later another, then four weeks, > then six weeks and every six weeks. > For some it takes two to three infusions before they notice any help, > for me it was right > after the first infusion, and found that six weeks was too long, so I > go every five weeks, and right now that's working. > I am sensitive to cold, my problem is when I get a little cold, I get > painfully cold, and and when I get hot I get really hot, told my > thermostat is off due to NS. > and I chew on ice all day, some days it will bother me and I switch > to warm water, but most days I feel my glass up with crushed ice, and > tea, or juice and chew up the ice while sipping the drink. > I do use the sensitive toothpaste too though. So that's different > for everyone I guess. > give the Remicade a chance, it may or may not work for you, but I've > heard some say that they didn't notice anything until after a few > infusions, good luck. > Marla > Marla > Just one day at a time, That's all God ask of us. for there never > really is a tomorrow, as that too > is just today:)  > > > >  > > Hi, . It's good to hear from you. Hopefully we'll get some > input from some other Remicade users. It may vary as to how quickly > you feel an improvement. That's odd about the cold sensitivity just > starting. I've had that for many, many years. I use a straw for > any drink with ice in it, & have to cover my mouth when it's really > cold outside. Mine started way before the sarc, so I don't think > there's a connection, for me at least. Using the Sensedyne toothpast > has helped, and I've trained my dentist & his staff to squirt water on > my tongue rather than directly on my teeth; then I can swish it around > & warm it up. > > RAMBLIN' ROSE > MODERATOR >  > _A MERRY HEART IS GOOD MEDICINE. PROVERBS 17:22_ >  > >   > >  > > > To: Neurosarcoidosis [2] >> From: keith@... [3] >> Date: Tue, 16 Nov 2010 21:20:32 +0000 > > Subject: Re: Hello? Hello? Anybody there? >> >> Hi Rose, >> >> A couple of weeks ago, I had my first Infliximab (Remicade) > infusion. >> I feel a little calmer inside, but am not convinced yet that there > has > > been any real change to the pains in back, fingers, etc. Curiously, >> over the recent past, my teeth and jaws have become really sensitive > to >> cold, even if breathing the winter air in through an open mouth. > > Anything from the fridge is painfully cold. Next infusion is on 01 > Dec, >> so we'll see if that makes the difference. Still on 20mgs Pred for > the >> while, together with omeprazol for the tum. >> > > Best regards, >> >> >> On Mon, 15 Nov 2010 21:54:59 -0500, Rose >> wrote: >> > Guys, this list has been way too quiet. Please check in to let us > > > know how you are doing--just a quick note is fine. >> > >> > _)_ >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2010 Report Share Posted November 18, 2010 Kieth, Infliximab is just the Generic name for Remicade used here too. I thought my doc was conservative, but then again, I have a good way of changing his mind, like starting out at 6 weeks and going to 5. I now wish he would raise the dosage, but he was not up for that:) so sounds like you'll have 3 in by Christmas, ya you should be feeling better by then, however don't over due, pace yourself, (I'm so good at saying that, and so bad at doing that) I guess I should take my own advice. When I get my infusion I get a little rush of energy for about an hour or two, and take advantage of it, and run all the errands I need to do in the city, then come home and feel awful the rest of the day. I live in a small town, with NO major department stores, however not complaining, as we are centered between 3 major cities, only 30mins for each, but still when I am in the city I might as well do what I need so not to drive back, lol. feel better:)MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) MArla, I guess my neuro is a bit more conservative. I am to have the infusions at 0 weeks, 4 weeks, 8 weeks and then three monthly thereafter. I am assuming from what I have read that Infliximab, which is what I am getting, is the UK name for Remicade. One thing I do know is that it is extraordinarily expensive. Thanks for saying that sometimes it takes a few tanks full for the effect to be felt. It confirms what the neuro was saying, that it would be Christmas before I felt good, but I would indeed feel good by then. God bless, On Wed, 17 Nov 2010 18:26:01 -0700, Marla Bramer wrote: > Kieth, > You don't get your next Remicade until Dec, when you start you > should get one infusion, the two weeks later another, then four weeks, > then six weeks and every six weeks. > For some it takes two to three infusions before they notice any help, > for me it was right > after the first infusion, and found that six weeks was too long, so I > go every five weeks, and right now that's working. > I am sensitive to cold, my problem is when I get a little cold, I get > painfully cold, and and when I get hot I get really hot, told my > thermostat is off due to NS. > and I chew on ice all day, some days it will bother me and I switch > to warm water, but most days I feel my glass up with crushed ice, and > tea, or juice and chew up the ice while sipping the drink. > I do use the sensitive toothpaste too though. So that's different > for everyone I guess. > give the Remicade a chance, it may or may not work for you, but I've > heard some say that they didn't notice anything until after a few > infusions, good luck. > Marla > Marla > Just one day at a time, That's all God ask of us. for there never > really is a tomorrow, as that too > is just today:) > > > > > > Hi, . It's good to hear from you. Hopefully we'll get some > input from some other Remicade users. It may vary as to how quickly > you feel an improvement. That's odd about the cold sensitivity just > starting. I've had that for many, many years. I use a straw for > any drink with ice in it, & have to cover my mouth when it's really > cold outside. Mine started way before the sarc, so I don't think > there's a connection, for me at least. Using the Sensedyne toothpast > has helped, and I've trained my dentist & his staff to squirt water on > my tongue rather than directly on my teeth; then I can swish it around > & warm it up. > > RAMBLIN' ROSE > MODERATOR > > _A MERRY HEART IS GOOD MEDICINE. PROVERBS 17:22_ > > > > > > > > To: Neurosarcoidosis [2] >> From: keith@... [3] >> Date: Tue, 16 Nov 2010 21:20:32 +0000 > > Subject: Re: Hello? Hello? Anybody there? >> >> Hi Rose, >> >> A couple of weeks ago, I had my first Infliximab (Remicade) > infusion. >> I feel a little calmer inside, but am not convinced yet that there > has > > been any real change to the pains in back, fingers, etc. Curiously, >> over the recent past, my teeth and jaws have become really sensitive > to >> cold, even if breathing the winter air in through an open mouth. > > Anything from the fridge is painfully cold. Next infusion is on 01 > Dec, >> so we'll see if that makes the difference. Still on 20mgs Pred for > the >> while, together with omeprazol for the tum. >> > > Best regards, >> >> >> On Mon, 15 Nov 2010 21:54:59 -0500, Rose >> wrote: >> > Guys, this list has been way too quiet. Please check in to let us > > > know how you are doing--just a quick note is fine. >> > >> > _)_ >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
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