Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 The Rheumatologist is most likely going to start remicade infusions since my ins will not cover methatrexate but medicare will cover remicade. So I am hoping they don't try to start the remicade next wednesday...I will be very sick and exhausted already without going through that as well...but the conversation I just had with the nurse from his office makes it sound like it's a good possibility i will have an infusion that day. Hope everyone is doing well and thanks for all the support...Hugs..Ginny Ginny, That is great that they are finally going to get some answers without going to 20 doctors. So now what is this infusion that you will be getting? Well that will be a bummer if you are too sick to eat turkey. take care and keep us informed, Lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 Ginny...The rheumatologist appt is in the afternoon correct? Do you want me to drive you there in case he does an infusion? Let me know..my only appt is in the morning at 10 am. Love ya Donna >but the conversation I just had with the nurse from his office makes it sound like it's a good possibility i will have an infusion that day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 Ginny...The rheumatologist appt is in the afternoon correct? Do you want me to drive you there in case he does an infusion? Let me know..my only appt is in the morning at 10 am. Love ya Donna >but the conversation I just had with the nurse from his office makes it sound like it's a good possibility i will have an infusion that day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 Ginny...The rheumatologist appt is in the afternoon correct? Do you want me to drive you there in case he does an infusion? Let me know..my only appt is in the morning at 10 am. Love ya Donna >but the conversation I just had with the nurse from his office makes it sound like it's a good possibility i will have an infusion that day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 Hi Ginny, I am so glad you seem to have a handle and a plan on what to do next. You have my thoughts and prayers. I look forward to hearing more as you move forward. Lots of love, Lyn Ginny Barrientos <hisloss123@y...> wrote: > Hi all, > Yesterday my appt went well...the dr was nice and knowledgeable. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 Lin, Remicade is a drug that used to be used for chemo that they now use for the treatment of rheumatoid arthritis. It is almost the same as embral that can be given in injections at home 2-3 times a week. But medicare will not cover embral. Remicade is given in a 35 min infusion every 6-8 weeks for 35 mins in a hopsital or sometimes drs office. The side effects can be severe depending on the person's reaction to the med. The biggest fear is that you can get infections very easy while on this...you have to take your temp alot and if running a temp go immediately to the hospital for IV antibiotics. Basically it kills off good cells while killing off bad cells just like any other chemo drug...but they found it actually reverses the affects of rhuematoid arthritis...not just helps the pain caused by it. It was fda approved a few years back for treatment of RA. I am hoping i don't get the horrible side effects..and that it helps the RA alot. Hugs..Ginny wrote: The Rheumatologist is most likely going to start remicade infusions since my ins will not cover methatrexate but medicare will cover remicade. So I am hoping they don't try to start the remicade next wednesday...I will be very sick and exhausted already without going through that as well...but the conversation I just had with the nurse from his office makes it sound like it's a good possibility i will have an infusion that day. Hope everyone is doing well and thanks for all the support...Hugs..Ginny Ginny, That is great that they are finally going to get some answers without going to 20 doctors. So now what is this infusion that you will be getting? Well that will be a bummer if you are too sick to eat turkey. take care and keep us informed, Lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 hope you pass the tests with flying colors Ginny, What color is barely squeaking by?? LOL. I'm fairly certain of the next two tests... we took the hardest one first (unknowingly, but that's a good thing). I didn't realize the treatment was a lifelong thing. I guess anytime is a good time then. Glad you don't have to go to the specialist every time... Glad to hear that your leg is less painful. Me, I had cortisone shots in both feet this AM. I have ganglion (sp?) cysts in both feet that keep growing, and my Dr. is hoping cortisone will shrink them a little. If not, means they have to be taken out. They didn't hurt til he put the cortisone in them darn it! Hugs, Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 Jo, If I do it it will be a lifetime treatment unless it doesn't work for me...so even if I don't do it now and start it after flu season..I will sure to be still on come next flu season..so if it helps slow/stop the progression of the optic neuritis then this is probably going to be the best time unfortunately. I didn't get the flu shot this year either..it's the first time in many that I didn't get one..i did get the pnuemonia vaccine last yr so I have 3 more years before I can get a booster for that. My kids both got the flu shot which will hopefully stop it from coming into the house...but having 2 kids that go to school means they drag in plenty of stuff over the year anyways. I don't think anytime is a good time for this medication...but if it helps the disease more then it harms me it's worth it. I always out weigh the benefits and the side effects and see if it's worth continueing...any medicine is the same really...you just have to realize nothing is really safe 100% unless it's natural and belongs in your body. If it doesn't belong you are always taking a chance and even if it's fda approved that doesn't mean 30-40 yrs down the line they will find out it causes horrible things to those who have taken it...but you can't worry about that especially when your quality of life would be horrible without the medicine. I did get good news from my dr. today..he agreed with the neurologist and said if they do start infusions he can keep an eye on it instead of going to the specialist everytime which is nice in some ways. He also gave me semi bad news that the RSD has definetly moved into my left leg and that I should expect my leg swelling periodically if not all the time due to the fact that I have sublexation of the patella and that could agrivate the RSD and that is why it spread there and since my right knee dislocates also don't be surprised if it happens to the right legs at some point also. The good news is the swelling in my left leg has gone down tremendously and is just a little painful now...hoping it stays like it is I can manage it like this fine. Oh well didn't mean to write a book...Hope you are having a great day and good luck on studying and hope you pass the tests with flying colors...I am sure you will. Hugs..Ginnyjomal1@... wrote: Ginny, In reading about the Remicade (I just saw something on TV about it too, wish I could remember what)... If it weakens your immune system, like chemo.. is this the best time to do it? Especially since it is cold and flu season and a lot of people aren't getting flu shots.. Just a thought. Sounds like a great idea, I just wondered about the timing of it. Hugs, Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 Jo, If I do it it will be a lifetime treatment unless it doesn't work for me...so even if I don't do it now and start it after flu season..I will sure to be still on come next flu season..so if it helps slow/stop the progression of the optic neuritis then this is probably going to be the best time unfortunately. I didn't get the flu shot this year either..it's the first time in many that I didn't get one..i did get the pnuemonia vaccine last yr so I have 3 more years before I can get a booster for that. My kids both got the flu shot which will hopefully stop it from coming into the house...but having 2 kids that go to school means they drag in plenty of stuff over the year anyways. I don't think anytime is a good time for this medication...but if it helps the disease more then it harms me it's worth it. I always out weigh the benefits and the side effects and see if it's worth continueing...any medicine is the same really...you just have to realize nothing is really safe 100% unless it's natural and belongs in your body. If it doesn't belong you are always taking a chance and even if it's fda approved that doesn't mean 30-40 yrs down the line they will find out it causes horrible things to those who have taken it...but you can't worry about that especially when your quality of life would be horrible without the medicine. I did get good news from my dr. today..he agreed with the neurologist and said if they do start infusions he can keep an eye on it instead of going to the specialist everytime which is nice in some ways. He also gave me semi bad news that the RSD has definetly moved into my left leg and that I should expect my leg swelling periodically if not all the time due to the fact that I have sublexation of the patella and that could agrivate the RSD and that is why it spread there and since my right knee dislocates also don't be surprised if it happens to the right legs at some point also. The good news is the swelling in my left leg has gone down tremendously and is just a little painful now...hoping it stays like it is I can manage it like this fine. Oh well didn't mean to write a book...Hope you are having a great day and good luck on studying and hope you pass the tests with flying colors...I am sure you will. Hugs..Ginnyjomal1@... wrote: Ginny, In reading about the Remicade (I just saw something on TV about it too, wish I could remember what)... If it weakens your immune system, like chemo.. is this the best time to do it? Especially since it is cold and flu season and a lot of people aren't getting flu shots.. Just a thought. Sounds like a great idea, I just wondered about the timing of it. Hugs, Jo Quote Link to comment Share on other sites More sharing options...
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