Guest guest Posted September 6, 2003 Report Share Posted September 6, 2003 Hi everyone, I just found this group last night while searching for info on Remicade. I saw my RD yesterday and we have decided that it is time to proceed with further options. I have had RA for 3 years and have been on Plaquinel & methotrexate which have both been increased with no results over the past two months. My question is for those of you on Remicade with methotrexate. How has it helped with joint stiffness and pain and fatigue. What are some of the side effects that you may have had. I am a little nervous about it so say the least, but it is the one tht the Dr wants to start with. I am still working full time, but have no energy for anything else. I have had to curtail my one and only love, canine agility with my dogs. I am getting to the point where it is a struggle to get through the days. My day starts at 5 AM and by 11 I am so tired it is hard to keep going. I am 54 and carry our insurance so I have to keep working. My husband is disabled and our medications cost a fortune without the insurance. Has anyone found any particular diet that is helpful? I try to eat a balanced diet, but is there anything in particular that seems to add energy except coffee. I would appreciate any input. I think the fact that I have a serious disease has finally sunk in and I am feeling pretty low right now. Deb Laliberte dlaliberte@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 I'm on Remicade and have been for a little over a year. It didn't do much for me at either 3 mg/kg or 5 mg/kg but when we went to 6 mg/kg I started to get relief that lasts about 6 weeks and allows me to come off Prednisone. Then I have to resume Prednisone for a couple of weeks before my next infusion. I'm also on 15 mg Methotrexate weekly. I have had no significant side effects that I am aware of from either the Remicade or Methotrexate but I am a little tired for a few hours after Remicade. The Remicade reduces pain significantly but I haven't had problems with stiffness or fatigue so I can't really address those. I do notice an increased range of motion of my arms and legs that may be related to joint stiffness but I'm not sure. As far as I know there is no diet that has been shown to benefit all people with RA but some people claim benefit from dietary changes. Some people eliminate vegetables of the nightshade family including potatoes and tomatoes, others eliminate red meat, some eliminate wheat products, others eliminate milk products. There is something that I think is called an elimination diet that starts with only a few basic foods that are unlikely to cause problems and then after a week or so to cleanse the system additional foods are added one at a time to see if there is an effect. I haven't tried it so I have no idea how it really works. Some people find that dark chocolate helps with pain and fatigue and I imagine unsweetened baker's chocolate would be best because it is lower calorie. I have heard that coffee interferes with metabolism of Methotrexate and should be limited to no more than one cup a day while on Methotrexate. I like my coffee so I drink more than that but I realize it is bad for me. Maybe other sources of caffeine are equally bad but I don't know. Prednisone helps many people with pain, stiffness and fatigue but it does not slow down or stop permanent joint damage and has many undesireable side effects. Each person has to make a decision of whether the benefits outweigh the potential problems for them. Good luck and God bless. Harold Van Tuiyl (Grandpavan1927) ----- Original Message ----- From: Deb Laliberte Rheumatoid Arthritis Sent: Friday, September 05, 2003 5:39 PM Subject: Remicade Hi everyone,I just found this group last night while searching for info on Remicade. Isaw my RD yesterday and we have decided that it is time to proceed withfurther options. I have had RA for 3 years and have been on Plaquinel & methotrexate which have both been increased with no results over the pasttwo months.My question is for those of you on Remicade with methotrexate. How has ithelped with joint stiffness and pain and fatigue. What are some of the sideeffects that you may have had. I am a little nervous about it so say theleast, but it is the one tht the Dr wants to start with.I am still working full time, but have no energy for anything else. I havehad to curtail my one and only love, canine agility with my dogs. I amgetting to the point where it is a struggle to get through the days. My daystarts at 5 AM and by 11 I am so tired it is hard to keep going. I am 54and carry our insurance so I have to keep working. My husband is disabledand our medications cost a fortune without the insurance. Has anyone foundany particular diet that is helpful? I try to eat a balanced diet, but isthere anything in particular that seems to add energy except coffee.I would appreciate any input. I think the fact that I have a seriousdisease has finally sunk in and I am feeling pretty low right now.Deb Lalibertedlaliberte@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 Hi Deb! I have had RA for about 3 1/2 years. I have been on Remicade for over 2 years. I started with the methotrexate when I was diagnosed. What I notice the most is I get extremely nauseated after a Remicade treatment. I also notice this when the dosages of either med is increased. I with you the best! It is a horrid disease!!! I hope the Remicade works for you! Please do not get discouraged if you don't see immediate results. Even after 2 years, after I have a treatment it takes about 1 week to notice any effects and they wear off before I am due to have another one. And remember that you can still have flare-ups when you are in treatment. I don't want to sound like a downer. Just telling you what's happened with me. Take care! Carla -----Original Message----- From: Deb Laliberte [mailto:dlaliberte@...] Sent: Friday, September 05, 2003 8:39 PM Rheumatoid Arthritis Subject: Remicade Hi everyone, I just found this group last night while searching for info on Remicade. I saw my RD yesterday and we have decided that it is time to proceed with further options. I have had RA for 3 years and have been on Plaquinel & methotrexate which have both been increased with no results over the past two months. My question is for those of you on Remicade with methotrexate. How has it helped with joint stiffness and pain and fatigue. What are some of the side effects that you may have had. I am a little nervous about it so say the least, but it is the one tht the Dr wants to start with. I am still working full time, but have no energy for anything else. I have had to curtail my one and only love, canine agility with my dogs. I am getting to the point where it is a struggle to get through the days. My day starts at 5 AM and by 11 I am so tired it is hard to keep going. I am 54 and carry our insurance so I have to keep working. My husband is disabled and our medications cost a fortune without the insurance. Has anyone found any particular diet that is helpful? I try to eat a balanced diet, but is there anything in particular that seems to add energy except coffee. I would appreciate any input. I think the fact that I have a serious disease has finally sunk in and I am feeling pretty low right now. Deb Laliberte dlaliberte@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 Jay, Good luck. I have TriCare, through the military and they didn't want to pay for Remicade either. But if your doctor pursists, you can get it approved. Good luck. - > Hi Gang, > > I saw my VA Doc yesterday and he prescibed Remicade for me. Sound > great, I've heard good things about it. Now I may have to do battle > with the VA to get it. You would think that as a Viet Nam vet and 17 > years with the Army National Guard I would get what they promised me > in 1970, but we know the govornment!!! > > Hope every one is is getting along OK. God Bless, > > Jay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2003 Report Share Posted October 28, 2003 Hi, Jay. It's good to have you back from the slope and participating with us again. I was just given a link to a recent piece on early treatment of RA that I think is very clear that early, aggressive treatment is essential. It also tells what medications are usually used for it. http://rheumatology.hss.edu/phys/musings/pagetRA.asp I hope this helps. You might print it out, highlight certain parts, and take it with you tomorrow. Good luck and God bless. ----- Original Message ----- From: Jay Bishop Rheumatoid Arthritis Sent: Monday, October 27, 2003 5:11 PM Subject: Remicade Tomorrow I have an appt. with the VA for a consultation for Remicade which my primary care physician prescribed to go with the Methotrexate and Plaquinil.I am wondering if anyone has gone through such a thing and if there are any arguments I can use in my favor to help convince them of my need for this medicine.I am currently taking 200 mg of Plaquinil, 10 mg of Prednisone daily and 15 mg Methotrexate weekly. I am having pain, inflamation and swelling. It happens every time I go below 15 mg of Prednisone. They keep trying to ween me off the stuff but when I go below the magic number, BINGO!Thanks and God Bless,Jay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2003 Report Share Posted October 28, 2003 Hi Harold, It is good to be back home. I should be home until December then back to the frozen arctic!!!. Thanks for the web site. I did print it out and will take it with me. The bold portion on page 5 is precisely what I need as that is exactly what is going on with my RA. Without lots of Prednisone I'm a mess and we all know that long term exposure to lots of Prednisone can do. Although at 55 I have a lot less to worry about than the younguns!!!! Thanks again and God Bless, Jay > Hi, Jay. It's good to have you back from the slope and participating with us again. I was just given a link to a recent piece on early treatment of RA that I think is very clear that early, aggressive treatment is essential. It also tells what medications are usually used for it. http://rheumatology.hss.edu/phys/musings/pagetRA.asp I hope this helps. You might print it out, highlight certain parts, and take it with you tomorrow. Good luck and God bless. > ----- Original Message ----- > From: Jay Bishop > Rheumatoid Arthritis > Sent: Monday, October 27, 2003 5:11 PM > Subject: Remicade > > > Tomorrow I have an appt. with the VA for a consultation for Remicade > which my primary care physician prescribed to go with the > Methotrexate and Plaquinil. > > I am wondering if anyone has gone through such a thing and if there > are any arguments I can use in my favor to help convince them of my > need for this medicine. > > I am currently taking 200 mg of Plaquinil, 10 mg of Prednisone daily > and 15 mg Methotrexate weekly. I am having pain, inflamation and > swelling. It happens every time I go below 15 mg of Prednisone. They > keep trying to ween me off the stuff but when I go below the magic > number, BINGO! > > Thanks and God Bless, > > Jay > > > Quote Link to comment Share on other sites More sharing options...
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