Guest guest Posted October 28, 2001 Report Share Posted October 28, 2001 Hi , I used to take NAC.....quit for awhile. I only take 50mg of Grapeseed extract a day - for maintenance. Its anti-oxidant properties are greater than C & E....in certain ways....If I read correctly. I take it synergistically with the other anti-oxidants. Another excellent remedy for Candida overgrowth is GSE(Grapefruit Seed Extract) - I take tablets form and it comes in liquid form as well - from *NutriBiotic - I think the link is www.nutriteam.com - anyways, search online - the page has lots of info. Its pretty amazing - powerful antiseptic properties. I see the PCP thing as a 'no-concern'.......as like you....what studies have been done about its suseptibilities? I jsut started taking some extra Niacin....to help with my circulation....and to de-toxify......havent experienced much of a 'flush' so I will be upping my dose gradually. Also great for lowering bad cholesterol. Sometimes my hands are cool.......does anyone know anything good besides niacin to help keep hands warm? I take Cayenne capsules as well. In wellness, paul ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 Adrienne, Have you ever read the book " The Wounded Woman " Here is a link: http://www.amazon.com/exec/obidos/ASIN/1570624119/qid=1095039086/sr=k a-1/ref=pd_ka_1/104-3562224-7009557 . You might find it interesting given your woman-must-be-everything past. I found it extremely helpful in letting go of my desire to be in charge of everything, just at a point in my life when I had to. I am so much happier now that I have let that go. There is a way to determine if you have any joint damage, through x- rays. Over time, x-rays can document the progression of the disease. It is possible to have joint damage without knowing it. By the time you notice it, it's too late. Each drug does have side effects, but they always sound worse than they are. And if you do experience side effects, you can always stop that particualar drug if in fact the side effect makes you worse off than you were without the drug. You don't always get the side effects, many don't, but without treatment RA can give you the worst possible and most painful outcome. You are really dealing with two things with RA. One, how is your ability to function day to day. And two, is there joint and bone erosion that will limit your ability to function down the road. Jennie > THank you for replying to my posting as someone coming to terms with RA. I > think the idea of choosing an illness helps me look at my self- beliefs and > try to choose different ones. For example I am someone who is super capable, > I run a small school that I helped start, and I have 4 children aged 7-15, > and I wonder whether having RA reinforces my belief of myself/chosen role as > a super-hero (something I adopted when I was 3 when my mother died in > childbirth leaving me and three younger ones - of course this mistaken role > no longer serves me). 'She can do all that AND battle with such a > debilitating illness!' By realising this, I'm working on being less driven > and controlling and more 'in the flow', trusting etc. I find it lessens the > stress and the resultant flares. > > REgarding supplements, I used to be as cautious of those as of > pharmaceuticals, but I feel so much better after 9 months on fish oils, > multivitamins, glucosamine, and Mag/Calc as well as acidophilus - as well as > a dramically changed diet to one of low-acid forming foods including wheat > (to which I am totally intolerant, it seems) and other gluten, potato/tomato > family and other things like citrus and red meat. Basically I eat a lot of > veg, nuts, seeds, pulses, fish, chicken etc which is a really healthy diet - > and I feel fitter generally than ever before practically. I came to this > approach by reading 'Say No To Arthritis' by Holford, a British > alternative practitioner who comes at the issue with his head screwed on (as > they say over here) and it's based on a regime of diet, exercise, > supplements, attitude etc. > > However, I've got a nearly permanetnly stiff shoulder and hips, and > sometimes I can't stand or walk for long. I get pain in other joints if I > overdo things much at all like carry a suitcase. Am I in denial?! > > Reading your posts, I wonder if I'm setting myself up for worsening the > outcome by not taking these great pharmaceuticals. The side effects sound > potentially gruesome. Would I know if my joints are becoming eroded? Are > there tests to tell? I have no inflammation and no pain in my hands so it's > a mysterious form of RA to my rheumatologist. > > Can any of you shed light on this? THanks for the previous replies; I've > found this site really helpful. > > Adrienne from England. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 Adrienne, Have you ever read the book " The Wounded Woman " Here is a link: http://www.amazon.com/exec/obidos/ASIN/1570624119/qid=1095039086/sr=k a-1/ref=pd_ka_1/104-3562224-7009557 . You might find it interesting given your woman-must-be-everything past. I found it extremely helpful in letting go of my desire to be in charge of everything, just at a point in my life when I had to. I am so much happier now that I have let that go. There is a way to determine if you have any joint damage, through x- rays. Over time, x-rays can document the progression of the disease. It is possible to have joint damage without knowing it. By the time you notice it, it's too late. Each drug does have side effects, but they always sound worse than they are. And if you do experience side effects, you can always stop that particualar drug if in fact the side effect makes you worse off than you were without the drug. You don't always get the side effects, many don't, but without treatment RA can give you the worst possible and most painful outcome. You are really dealing with two things with RA. One, how is your ability to function day to day. And two, is there joint and bone erosion that will limit your ability to function down the road. Jennie > THank you for replying to my posting as someone coming to terms with RA. I > think the idea of choosing an illness helps me look at my self- beliefs and > try to choose different ones. For example I am someone who is super capable, > I run a small school that I helped start, and I have 4 children aged 7-15, > and I wonder whether having RA reinforces my belief of myself/chosen role as > a super-hero (something I adopted when I was 3 when my mother died in > childbirth leaving me and three younger ones - of course this mistaken role > no longer serves me). 'She can do all that AND battle with such a > debilitating illness!' By realising this, I'm working on being less driven > and controlling and more 'in the flow', trusting etc. I find it lessens the > stress and the resultant flares. > > REgarding supplements, I used to be as cautious of those as of > pharmaceuticals, but I feel so much better after 9 months on fish oils, > multivitamins, glucosamine, and Mag/Calc as well as acidophilus - as well as > a dramically changed diet to one of low-acid forming foods including wheat > (to which I am totally intolerant, it seems) and other gluten, potato/tomato > family and other things like citrus and red meat. Basically I eat a lot of > veg, nuts, seeds, pulses, fish, chicken etc which is a really healthy diet - > and I feel fitter generally than ever before practically. I came to this > approach by reading 'Say No To Arthritis' by Holford, a British > alternative practitioner who comes at the issue with his head screwed on (as > they say over here) and it's based on a regime of diet, exercise, > supplements, attitude etc. > > However, I've got a nearly permanetnly stiff shoulder and hips, and > sometimes I can't stand or walk for long. I get pain in other joints if I > overdo things much at all like carry a suitcase. Am I in denial?! > > Reading your posts, I wonder if I'm setting myself up for worsening the > outcome by not taking these great pharmaceuticals. The side effects sound > potentially gruesome. Would I know if my joints are becoming eroded? Are > there tests to tell? I have no inflammation and no pain in my hands so it's > a mysterious form of RA to my rheumatologist. > > Can any of you shed light on this? THanks for the previous replies; I've > found this site really helpful. > > Adrienne from England. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Hi Adrienne It is interesting what you say I always viewed myself in a similar way and still do to the greater extent, which is maybe why it is so hard for us to accept this disease. I found it very hard to accept that I can no longer live my life the way I used to, but once I accepted I no longer could I set about making the most of what I have, I became ill when my sons were 8 (twins) they are nearly 15 now. I wasn't diagnosed until 2/3 years later I was racked with guilt that I could not enjoy doing all the things I wanted to with my children but I think you have to focus on all the positive things you have done and can do. As you say removing the stress can only be a good thing. When I was first diagnosed my old rheumatologist seemed to think that my RA would burn itself out and so did my GP, but it didn't it just worsened together with the fatigue, stiffness and my ESR rocketed. Like you my hands are not badly affected although over the years my grip has gone and my index fingers look slightly deformed. I have had hip and shoulder problems as well. I have found my feet are the worst and so painful to walk on, I have never had Xrays and my new rheumatologist has never suggested I have them he works on my ESR levels, how many painful joints I have and my overall well being. He has talked in length to me he said you can leave the condition alone, but he feels when there are drugs available to help avert the progression of the disease he believes they should be used. He said it can take time to find the right combination of drugs to help and yes the possible side effects are pretty dire, but if your condition improves or you go into remission it is worth the risk. He said he feels he would have failed if several years down the line you come to his clinic with severely deformed joints and he had not offered you the option of trying these drugs. For me it is worth the risk reading about these drugs is scary and worrying but I know I would be a whole lot worse than I am at the moment. Judith (also in the UK) [ ] supplements etc > THank you for replying to my posting as someone coming to terms with RA. I > think the idea of choosing an illness helps me look at my self-beliefs and > try to choose different ones. For example I am someone who is super capable, > I run a small school that I helped start, and I have 4 children aged 7-15, > and I wonder whether having RA reinforces my belief of myself/chosen role as > a super-hero (something I adopted when I was 3 when my mother died in > childbirth leaving me and three younger ones - of course this mistaken role > no longer serves me). 'She can do all that AND battle with such a > debilitating illness!' By realising this, I'm working on being less driven > and controlling and more 'in the flow', trusting etc. I find it lessens the > stress and the resultant flares. > > REgarding supplements, I used to be as cautious of those as of > pharmaceuticals, but I feel so much better after 9 months on fish oils, > multivitamins, glucosamine, and Mag/Calc as well as acidophilus - as well as > a dramically changed diet to one of low-acid forming foods including wheat > (to which I am totally intolerant, it seems) and other gluten, potato/tomato > family and other things like citrus and red meat. Basically I eat a lot of > veg, nuts, seeds, pulses, fish, chicken etc which is a really healthy diet - > and I feel fitter generally than ever before practically. I came to this > approach by reading 'Say No To Arthritis' by Holford, a British > alternative practitioner who comes at the issue with his head screwed on (as > they say over here) and it's based on a regime of diet, exercise, > supplements, attitude etc. > > However, I've got a nearly permanetnly stiff shoulder and hips, and > sometimes I can't stand or walk for long. I get pain in other joints if I > overdo things much at all like carry a suitcase. Am I in denial?! > > Reading your posts, I wonder if I'm setting myself up for worsening the > outcome by not taking these great pharmaceuticals. The side effects sound > potentially gruesome. Would I know if my joints are becoming eroded? Are > there tests to tell? I have no inflammation and no pain in my hands so it's > a mysterious form of RA to my rheumatologist. > > Can any of you shed light on this? THanks for the previous replies; I've > found this site really helpful. > > Adrienne from England. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Hi Adrienne It is interesting what you say I always viewed myself in a similar way and still do to the greater extent, which is maybe why it is so hard for us to accept this disease. I found it very hard to accept that I can no longer live my life the way I used to, but once I accepted I no longer could I set about making the most of what I have, I became ill when my sons were 8 (twins) they are nearly 15 now. I wasn't diagnosed until 2/3 years later I was racked with guilt that I could not enjoy doing all the things I wanted to with my children but I think you have to focus on all the positive things you have done and can do. As you say removing the stress can only be a good thing. When I was first diagnosed my old rheumatologist seemed to think that my RA would burn itself out and so did my GP, but it didn't it just worsened together with the fatigue, stiffness and my ESR rocketed. Like you my hands are not badly affected although over the years my grip has gone and my index fingers look slightly deformed. I have had hip and shoulder problems as well. I have found my feet are the worst and so painful to walk on, I have never had Xrays and my new rheumatologist has never suggested I have them he works on my ESR levels, how many painful joints I have and my overall well being. He has talked in length to me he said you can leave the condition alone, but he feels when there are drugs available to help avert the progression of the disease he believes they should be used. He said it can take time to find the right combination of drugs to help and yes the possible side effects are pretty dire, but if your condition improves or you go into remission it is worth the risk. He said he feels he would have failed if several years down the line you come to his clinic with severely deformed joints and he had not offered you the option of trying these drugs. For me it is worth the risk reading about these drugs is scary and worrying but I know I would be a whole lot worse than I am at the moment. Judith (also in the UK) [ ] supplements etc > THank you for replying to my posting as someone coming to terms with RA. I > think the idea of choosing an illness helps me look at my self-beliefs and > try to choose different ones. For example I am someone who is super capable, > I run a small school that I helped start, and I have 4 children aged 7-15, > and I wonder whether having RA reinforces my belief of myself/chosen role as > a super-hero (something I adopted when I was 3 when my mother died in > childbirth leaving me and three younger ones - of course this mistaken role > no longer serves me). 'She can do all that AND battle with such a > debilitating illness!' By realising this, I'm working on being less driven > and controlling and more 'in the flow', trusting etc. I find it lessens the > stress and the resultant flares. > > REgarding supplements, I used to be as cautious of those as of > pharmaceuticals, but I feel so much better after 9 months on fish oils, > multivitamins, glucosamine, and Mag/Calc as well as acidophilus - as well as > a dramically changed diet to one of low-acid forming foods including wheat > (to which I am totally intolerant, it seems) and other gluten, potato/tomato > family and other things like citrus and red meat. Basically I eat a lot of > veg, nuts, seeds, pulses, fish, chicken etc which is a really healthy diet - > and I feel fitter generally than ever before practically. I came to this > approach by reading 'Say No To Arthritis' by Holford, a British > alternative practitioner who comes at the issue with his head screwed on (as > they say over here) and it's based on a regime of diet, exercise, > supplements, attitude etc. > > However, I've got a nearly permanetnly stiff shoulder and hips, and > sometimes I can't stand or walk for long. I get pain in other joints if I > overdo things much at all like carry a suitcase. Am I in denial?! > > Reading your posts, I wonder if I'm setting myself up for worsening the > outcome by not taking these great pharmaceuticals. The side effects sound > potentially gruesome. Would I know if my joints are becoming eroded? Are > there tests to tell? I have no inflammation and no pain in my hands so it's > a mysterious form of RA to my rheumatologist. > > Can any of you shed light on this? THanks for the previous replies; I've > found this site really helpful. > > Adrienne from England. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Hi, my name is Semalee and I am new to this list. I am wondering if I can just jump in with questions? I was diagnosed in 84 with JRA and it went into remission when I was 17 and now at 29 it is back, but this time with a vengeance!! After a year of being on MTX, and Naproxen then Ibruprofen then Vioxx now Bextra, it is still progressing and I am in a lot of pain most of the time. My knuckles and wrists are swollen and bumpy, gross looking. My toes were all that were hurting, now it is my whole feet, ankles and occasionnally my knees. My doctor wants me to move onto remicade, humira, or enbrel, because we have otherwise hit a dead end. I am very scared about these drugs, but also don't want to be in a wheelchair either. I am wondering what everyone's feelings are on these drugs... Thank you very much for your help! Semalee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Hi, my name is Semalee and I am new to this list. I am wondering if I can just jump in with questions? I was diagnosed in 84 with JRA and it went into remission when I was 17 and now at 29 it is back, but this time with a vengeance!! After a year of being on MTX, and Naproxen then Ibruprofen then Vioxx now Bextra, it is still progressing and I am in a lot of pain most of the time. My knuckles and wrists are swollen and bumpy, gross looking. My toes were all that were hurting, now it is my whole feet, ankles and occasionnally my knees. My doctor wants me to move onto remicade, humira, or enbrel, because we have otherwise hit a dead end. I am very scared about these drugs, but also don't want to be in a wheelchair either. I am wondering what everyone's feelings are on these drugs... Thank you very much for your help! Semalee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Semalee _ I have been dealing with RA since approximately 1976 ( hard to put a date on it) It was positively diagnosed in 1988 with positive rheumatoid factor. The drugs you are frightened of do put the disease- if not in remission- at least under control. I have lost all of my rheumatoid nodules with remicade ( those gross little bumps.) I don't like it - but you have to balance mobility and almost a normal life with the risks- not that we should be blind to the risks- we can't afford to be. The name of the game is informed risk and good patient advocacy ( trust me - you need to be your own advocate) and patient education. If I can be of any help I'll try. Hugs & welcome, > Hi, my name is Semalee and I am new to this list. I am wondering if I can just > jump in with questions? > > I was diagnosed in 84 with JRA and it went into remission when I was 17 and now > at 29 it is back, but this time with a vengeance!! After a year of being on > MTX, and Naproxen then Ibruprofen then Vioxx now Bextra, it is still progressing > and I am in a lot of pain most of the time. My knuckles and wrists are swollen > and bumpy, gross looking. My toes were all that were hurting, now it is my > whole feet, ankles and occasionnally my knees. My doctor wants me to move onto > remicade, humira, or enbrel, because we have otherwise hit a dead end. I am > very scared about these drugs, but also don't want to be in a wheelchair either. > I am wondering what everyone's feelings are on these drugs... > Thank you very much for your help! > Semalee > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Semalee _ I have been dealing with RA since approximately 1976 ( hard to put a date on it) It was positively diagnosed in 1988 with positive rheumatoid factor. The drugs you are frightened of do put the disease- if not in remission- at least under control. I have lost all of my rheumatoid nodules with remicade ( those gross little bumps.) I don't like it - but you have to balance mobility and almost a normal life with the risks- not that we should be blind to the risks- we can't afford to be. The name of the game is informed risk and good patient advocacy ( trust me - you need to be your own advocate) and patient education. If I can be of any help I'll try. Hugs & welcome, > Hi, my name is Semalee and I am new to this list. I am wondering if I can just > jump in with questions? > > I was diagnosed in 84 with JRA and it went into remission when I was 17 and now > at 29 it is back, but this time with a vengeance!! After a year of being on > MTX, and Naproxen then Ibruprofen then Vioxx now Bextra, it is still progressing > and I am in a lot of pain most of the time. My knuckles and wrists are swollen > and bumpy, gross looking. My toes were all that were hurting, now it is my > whole feet, ankles and occasionnally my knees. My doctor wants me to move onto > remicade, humira, or enbrel, because we have otherwise hit a dead end. I am > very scared about these drugs, but also don't want to be in a wheelchair either. > I am wondering what everyone's feelings are on these drugs... > Thank you very much for your help! > Semalee > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 That is encouraging. I don't know why I am being such a chicken about this, when I watched my grandma become completely disabled. I know where this thing is headed and it aint fun!! I just feel like I already have enough problems, ya know? Have you noticed a change in your immune system? Do you get sick more often? I have children in school and worse I work in a school with 12 green snotted two year olds! I got real sick my first year working there, but have since done better, I am sure do to building up immunity. I am concerned that this may become a problem with the remicade. It sounds like my doctor is leaning towards remicade, but told me I could make the choice if I wanted the others.. Semalee Re: [ ] supplements etc Semalee _ I have been dealing with RA since approximately 1976 ( hard to put a date on it) It was positively diagnosed in 1988 with positive rheumatoid factor. The drugs you are frightened of do put the disease- if not in remission- at least under control. I have lost all of my rheumatoid nodules with remicade ( those gross little bumps.) I don't like it - but you have to balance mobility and almost a normal life with the risks- not that we should be blind to the risks- we can't afford to be. The name of the game is informed risk and good patient advocacy ( trust me - you need to be your own advocate) and patient education. If I can be of any help I'll try. Hugs & welcome, > Hi, my name is Semalee and I am new to this list. I am wondering if I can just > jump in with questions? > > I was diagnosed in 84 with JRA and it went into remission when I was 17 and now > at 29 it is back, but this time with a vengeance!! After a year of being on > MTX, and Naproxen then Ibruprofen then Vioxx now Bextra, it is still progressing > and I am in a lot of pain most of the time. My knuckles and wrists are swollen > and bumpy, gross looking. My toes were all that were hurting, now it is my > whole feet, ankles and occasionnally my knees. My doctor wants me to move onto > remicade, humira, or enbrel, because we have otherwise hit a dead end. I am > very scared about these drugs, but also don't want to be in a wheelchair either. > I am wondering what everyone's feelings are on these drugs... > Thank you very much for your help! > Semalee > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 That is encouraging. I don't know why I am being such a chicken about this, when I watched my grandma become completely disabled. I know where this thing is headed and it aint fun!! I just feel like I already have enough problems, ya know? Have you noticed a change in your immune system? Do you get sick more often? I have children in school and worse I work in a school with 12 green snotted two year olds! I got real sick my first year working there, but have since done better, I am sure do to building up immunity. I am concerned that this may become a problem with the remicade. It sounds like my doctor is leaning towards remicade, but told me I could make the choice if I wanted the others.. Semalee Re: [ ] supplements etc Semalee _ I have been dealing with RA since approximately 1976 ( hard to put a date on it) It was positively diagnosed in 1988 with positive rheumatoid factor. The drugs you are frightened of do put the disease- if not in remission- at least under control. I have lost all of my rheumatoid nodules with remicade ( those gross little bumps.) I don't like it - but you have to balance mobility and almost a normal life with the risks- not that we should be blind to the risks- we can't afford to be. The name of the game is informed risk and good patient advocacy ( trust me - you need to be your own advocate) and patient education. If I can be of any help I'll try. Hugs & welcome, > Hi, my name is Semalee and I am new to this list. I am wondering if I can just > jump in with questions? > > I was diagnosed in 84 with JRA and it went into remission when I was 17 and now > at 29 it is back, but this time with a vengeance!! After a year of being on > MTX, and Naproxen then Ibruprofen then Vioxx now Bextra, it is still progressing > and I am in a lot of pain most of the time. My knuckles and wrists are swollen > and bumpy, gross looking. My toes were all that were hurting, now it is my > whole feet, ankles and occasionnally my knees. My doctor wants me to move onto > remicade, humira, or enbrel, because we have otherwise hit a dead end. I am > very scared about these drugs, but also don't want to be in a wheelchair either. > I am wondering what everyone's feelings are on these drugs... > Thank you very much for your help! > Semalee > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Welcome Semalee. Sorry the RA came back. I can't blame you for being afraid of the meds, most of us are. I fear the damage so it makes my decision easier. I started on Enbrel shortly after it was approved in 1998. It brought dramatic improvement. I've had to stop it when there is a possibility of an infection, like when I have a cold, because all the biologicals can make you more suceptable to infection. a > Hi, my name is Semalee and I am new to this list. I am wondering if I can > just jump in with questions? > > I was diagnosed in 84 with JRA and it went into remission when I was 17 and > now at 29 it is back, but this time with a vengeance!! After a year of being > on MTX, and Naproxen then Ibruprofen then Vioxx now Bextra, it is still > progressing and I am in a lot of pain most of the time. My knuckles and > wrists are swollen and bumpy, gross looking. My toes were all that were > hurting, now it is my whole feet, ankles and occasionnally my knees. My > doctor wants me to move onto remicade, humira, or enbrel, because we have > otherwise hit a dead end. I am very scared about these drugs, but also don't > want to be in a wheelchair either. I am wondering what everyone's feelings > are on these drugs... > Thank you very much for your help! > Semalee > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Welcome Semalee. Sorry the RA came back. I can't blame you for being afraid of the meds, most of us are. I fear the damage so it makes my decision easier. I started on Enbrel shortly after it was approved in 1998. It brought dramatic improvement. I've had to stop it when there is a possibility of an infection, like when I have a cold, because all the biologicals can make you more suceptable to infection. a > Hi, my name is Semalee and I am new to this list. I am wondering if I can > just jump in with questions? > > I was diagnosed in 84 with JRA and it went into remission when I was 17 and > now at 29 it is back, but this time with a vengeance!! After a year of being > on MTX, and Naproxen then Ibruprofen then Vioxx now Bextra, it is still > progressing and I am in a lot of pain most of the time. My knuckles and > wrists are swollen and bumpy, gross looking. My toes were all that were > hurting, now it is my whole feet, ankles and occasionnally my knees. My > doctor wants me to move onto remicade, humira, or enbrel, because we have > otherwise hit a dead end. I am very scared about these drugs, but also don't > want to be in a wheelchair either. I am wondering what everyone's feelings > are on these drugs... > Thank you very much for your help! > Semalee > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Adrienne, I've had RA for 25+ years and my hands are not affected. For that reason, I've always questioned my diagnosis since RA ususally affects the hand. Erosion can be seen on x-ray and some doctors will use x-rays to check the progression of joint erosion. You really won't know until all the cartilage in the affected joint is gone and you have bone on bone pain, which is pretty bad. a > THank you for replying to my posting as someone coming to terms with RA. I > think the idea of choosing an illness helps me look at my self-beliefs and > try to choose different ones. For example I am someone who is super capable, > I run a small school that I helped start, and I have 4 children aged 7-15, > and I wonder whether having RA reinforces my belief of myself/chosen role as > a super-hero (something I adopted when I was 3 when my mother died in > childbirth leaving me and three younger ones - of course this mistaken role > no longer serves me). 'She can do all that AND battle with such a > debilitating illness!' By realising this, I'm working on being less driven > and controlling and more 'in the flow', trusting etc. I find it lessens the > stress and the resultant flares. > > REgarding supplements, I used to be as cautious of those as of > pharmaceuticals, but I feel so much better after 9 months on fish oils, > multivitamins, glucosamine, and Mag/Calc as well as acidophilus - as well as > a dramically changed diet to one of low-acid forming foods including wheat > (to which I am totally intolerant, it seems) and other gluten, potato/tomato > family and other things like citrus and red meat. Basically I eat a lot of > veg, nuts, seeds, pulses, fish, chicken etc which is a really healthy diet - > and I feel fitter generally than ever before practically. I came to this > approach by reading 'Say No To Arthritis' by Holford, a British > alternative practitioner who comes at the issue with his head screwed on (as > they say over here) and it's based on a regime of diet, exercise, > supplements, attitude etc. > > However, I've got a nearly permanetnly stiff shoulder and hips, and > sometimes I can't stand or walk for long. I get pain in other joints if I > overdo things much at all like carry a suitcase. Am I in denial?! > > Reading your posts, I wonder if I'm setting myself up for worsening the > outcome by not taking these great pharmaceuticals. The side effects sound > potentially gruesome. Would I know if my joints are becoming eroded? Are > there tests to tell? I have no inflammation and no pain in my hands so it's > a mysterious form of RA to my rheumatologist. > > Can any of you shed light on this? THanks for the previous replies; I've > found this site really helpful. > > Adrienne from England. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Adrienne, I've had RA for 25+ years and my hands are not affected. For that reason, I've always questioned my diagnosis since RA ususally affects the hand. Erosion can be seen on x-ray and some doctors will use x-rays to check the progression of joint erosion. You really won't know until all the cartilage in the affected joint is gone and you have bone on bone pain, which is pretty bad. a > THank you for replying to my posting as someone coming to terms with RA. I > think the idea of choosing an illness helps me look at my self-beliefs and > try to choose different ones. For example I am someone who is super capable, > I run a small school that I helped start, and I have 4 children aged 7-15, > and I wonder whether having RA reinforces my belief of myself/chosen role as > a super-hero (something I adopted when I was 3 when my mother died in > childbirth leaving me and three younger ones - of course this mistaken role > no longer serves me). 'She can do all that AND battle with such a > debilitating illness!' By realising this, I'm working on being less driven > and controlling and more 'in the flow', trusting etc. I find it lessens the > stress and the resultant flares. > > REgarding supplements, I used to be as cautious of those as of > pharmaceuticals, but I feel so much better after 9 months on fish oils, > multivitamins, glucosamine, and Mag/Calc as well as acidophilus - as well as > a dramically changed diet to one of low-acid forming foods including wheat > (to which I am totally intolerant, it seems) and other gluten, potato/tomato > family and other things like citrus and red meat. Basically I eat a lot of > veg, nuts, seeds, pulses, fish, chicken etc which is a really healthy diet - > and I feel fitter generally than ever before practically. I came to this > approach by reading 'Say No To Arthritis' by Holford, a British > alternative practitioner who comes at the issue with his head screwed on (as > they say over here) and it's based on a regime of diet, exercise, > supplements, attitude etc. > > However, I've got a nearly permanetnly stiff shoulder and hips, and > sometimes I can't stand or walk for long. I get pain in other joints if I > overdo things much at all like carry a suitcase. Am I in denial?! > > Reading your posts, I wonder if I'm setting myself up for worsening the > outcome by not taking these great pharmaceuticals. The side effects sound > potentially gruesome. Would I know if my joints are becoming eroded? Are > there tests to tell? I have no inflammation and no pain in my hands so it's > a mysterious form of RA to my rheumatologist. > > Can any of you shed light on this? THanks for the previous replies; I've > found this site really helpful. > > Adrienne from England. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Semalee, I am having excellent results with Enbrel. I have had no adverse side effects that I know of. I don't get sick more often even though my white blood cell count is low for other reasons. But I don't work in a school any longer but am retired. You inject Enbrel twice a week, which seems easier to me than having to go in for infusions. But many people are getting good results from Remicade, as well as Humira. If you have bad side effects from one medication, you can always switch to another one. Good luck, Sue On Monday, September 13, 2004, at 09:13 PM, Semalee wrote: > That is encouraging. I don't know why I am being such a chicken about > this, when I watched my grandma become completely disabled. I know > where this thing is headed and it aint fun!! I just feel like I > already have enough problems, ya know? Have you noticed a change in > your immune system? Do you get sick more often? I have children in > school and worse I work in a school with 12 green snotted two year > olds! I got real sick my first year working there, but have since > done better, I am sure do to building up immunity. I am concerned > that this may become a problem with the remicade. It sounds like my > doctor is leaning towards remicade, but told me I could make the > choice if I wanted the others.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Semalee, I am having excellent results with Enbrel. I have had no adverse side effects that I know of. I don't get sick more often even though my white blood cell count is low for other reasons. But I don't work in a school any longer but am retired. You inject Enbrel twice a week, which seems easier to me than having to go in for infusions. But many people are getting good results from Remicade, as well as Humira. If you have bad side effects from one medication, you can always switch to another one. Good luck, Sue On Monday, September 13, 2004, at 09:13 PM, Semalee wrote: > That is encouraging. I don't know why I am being such a chicken about > this, when I watched my grandma become completely disabled. I know > where this thing is headed and it aint fun!! I just feel like I > already have enough problems, ya know? Have you noticed a change in > your immune system? Do you get sick more often? I have children in > school and worse I work in a school with 12 green snotted two year > olds! I got real sick my first year working there, but have since > done better, I am sure do to building up immunity. I am concerned > that this may become a problem with the remicade. It sounds like my > doctor is leaning towards remicade, but told me I could make the > choice if I wanted the others.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2004 Report Share Posted September 14, 2004 Semalee, My feeling on these drugs (Enbrel, Remicade and Humira) is that they are miracle drugs for RA patients. They are proteins (TNF blockers) and they counteract a protein that RA patients generate too much of (TNF). I don't think of these drugs as unhealthy. My mom has been on Enbrel since it was in the testing phase and I have been on Humira since January. Neither of us has ever experienced a side effect attributable to these drugs. You are right to question the choice to start any new medication. Do some reasearch on how these drugs work for RA and keep asking questions. Jennie > Hi, my name is Semalee and I am new to this list. I am wondering if I can just jump in with questions? > > I was diagnosed in 84 with JRA and it went into remission when I was 17 and now at 29 it is back, but this time with a vengeance!! After a year of being on MTX, and Naproxen then Ibruprofen then Vioxx now Bextra, it is still progressing and I am in a lot of pain most of the time. My knuckles and wrists are swollen and bumpy, gross looking. My toes were all that were hurting, now it is my whole feet, ankles and occasionnally my knees. My doctor wants me to move onto remicade, humira, or enbrel, because we have otherwise hit a dead end. I am very scared about these drugs, but also don't want to be in a wheelchair either. I am wondering what everyone's feelings are on these drugs... > Thank you very much for your help! > Semalee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2004 Report Share Posted September 14, 2004 Semalee, My feeling on these drugs (Enbrel, Remicade and Humira) is that they are miracle drugs for RA patients. They are proteins (TNF blockers) and they counteract a protein that RA patients generate too much of (TNF). I don't think of these drugs as unhealthy. My mom has been on Enbrel since it was in the testing phase and I have been on Humira since January. Neither of us has ever experienced a side effect attributable to these drugs. You are right to question the choice to start any new medication. Do some reasearch on how these drugs work for RA and keep asking questions. Jennie > Hi, my name is Semalee and I am new to this list. I am wondering if I can just jump in with questions? > > I was diagnosed in 84 with JRA and it went into remission when I was 17 and now at 29 it is back, but this time with a vengeance!! After a year of being on MTX, and Naproxen then Ibruprofen then Vioxx now Bextra, it is still progressing and I am in a lot of pain most of the time. My knuckles and wrists are swollen and bumpy, gross looking. My toes were all that were hurting, now it is my whole feet, ankles and occasionnally my knees. My doctor wants me to move onto remicade, humira, or enbrel, because we have otherwise hit a dead end. I am very scared about these drugs, but also don't want to be in a wheelchair either. I am wondering what everyone's feelings are on these drugs... > Thank you very much for your help! > Semalee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2004 Report Share Posted September 14, 2004 I have been on prednisone so long I am not sure what effects my immune system. I just know at the first sign of a cold or infection - I need to at least call my doctor. I have been more prone to pneumonia and to weird infections like cellulitis in the last few years- but can not directly attribute it to the Remicade. I have some difficulty with the IV and if it continues we may look into Humira ( the two drugs are comparable). By difficulty I mean my veins are small and deep and IVs are hard to start. The treatments are uneventful - and with my crazy schedule at work- yes, I am still able to work- I almost look forward to the afternoon off - to put up my feet- read - watch tube or listen to music. Time flies and staff at hospital where I receive treatment are wonderful. Hugs, > That is encouraging. I don't know why I am being such a chicken about this, > when I watched my grandma become completely disabled. I know where this thing > is headed and it aint fun!! I just feel like I already have enough problems, ya > know? Have you noticed a change in your immune system? Do you get sick more > often? I have children in school and worse I work in a school with 12 green > snotted two year olds! I got real sick my first year working there, but have > since done better, I am sure do to building up immunity. I am concerned that > this may become a problem with the remicade. It sounds like my doctor is > leaning towards remicade, but told me I could make the choice if I wanted the > others.. > Semalee > Re: [ ] supplements etc > > > Semalee _ I have been dealing with RA since approximately 1976 ( hard to put a > date on it) It was positively diagnosed in 1988 with positive rheumatoid factor. > The drugs you are frightened of do put the disease- if not in remission- at > least under control. I have lost all of my rheumatoid nodules with remicade ( > those gross little bumps.) I don't like it - but you have to balance mobility > and almost a normal life with the risks- not that we should be blind to the > risks- we can't afford to be. The name of the game is informed risk and good > patient advocacy ( trust me - you need to be your own advocate) and patient > education. If I can be of any help I'll try. > > Hugs & welcome, > > > > Hi, my name is Semalee and I am new to this list. I am wondering if I can > just > > jump in with questions? > > > > I was diagnosed in 84 with JRA and it went into remission when I was 17 and > now > > at 29 it is back, but this time with a vengeance!! After a year of being on > > MTX, and Naproxen then Ibruprofen then Vioxx now Bextra, it is still > progressing > > and I am in a lot of pain most of the time. My knuckles and wrists are > swollen > > and bumpy, gross looking. My toes were all that were hurting, now it is my > > whole feet, ankles and occasionnally my knees. My doctor wants me to move > onto > > remicade, humira, or enbrel, because we have otherwise hit a dead end. I am > > very scared about these drugs, but also don't want to be in a wheelchair > either. > > I am wondering what everyone's feelings are on these drugs... > > Thank you very much for your help! > > Semalee > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2004 Report Share Posted September 14, 2004 I have been on prednisone so long I am not sure what effects my immune system. I just know at the first sign of a cold or infection - I need to at least call my doctor. I have been more prone to pneumonia and to weird infections like cellulitis in the last few years- but can not directly attribute it to the Remicade. I have some difficulty with the IV and if it continues we may look into Humira ( the two drugs are comparable). By difficulty I mean my veins are small and deep and IVs are hard to start. The treatments are uneventful - and with my crazy schedule at work- yes, I am still able to work- I almost look forward to the afternoon off - to put up my feet- read - watch tube or listen to music. Time flies and staff at hospital where I receive treatment are wonderful. Hugs, > That is encouraging. I don't know why I am being such a chicken about this, > when I watched my grandma become completely disabled. I know where this thing > is headed and it aint fun!! I just feel like I already have enough problems, ya > know? Have you noticed a change in your immune system? Do you get sick more > often? I have children in school and worse I work in a school with 12 green > snotted two year olds! I got real sick my first year working there, but have > since done better, I am sure do to building up immunity. I am concerned that > this may become a problem with the remicade. It sounds like my doctor is > leaning towards remicade, but told me I could make the choice if I wanted the > others.. > Semalee > Re: [ ] supplements etc > > > Semalee _ I have been dealing with RA since approximately 1976 ( hard to put a > date on it) It was positively diagnosed in 1988 with positive rheumatoid factor. > The drugs you are frightened of do put the disease- if not in remission- at > least under control. I have lost all of my rheumatoid nodules with remicade ( > those gross little bumps.) I don't like it - but you have to balance mobility > and almost a normal life with the risks- not that we should be blind to the > risks- we can't afford to be. The name of the game is informed risk and good > patient advocacy ( trust me - you need to be your own advocate) and patient > education. If I can be of any help I'll try. > > Hugs & welcome, > > > > Hi, my name is Semalee and I am new to this list. I am wondering if I can > just > > jump in with questions? > > > > I was diagnosed in 84 with JRA and it went into remission when I was 17 and > now > > at 29 it is back, but this time with a vengeance!! After a year of being on > > MTX, and Naproxen then Ibruprofen then Vioxx now Bextra, it is still > progressing > > and I am in a lot of pain most of the time. My knuckles and wrists are > swollen > > and bumpy, gross looking. My toes were all that were hurting, now it is my > > whole feet, ankles and occasionnally my knees. My doctor wants me to move > onto > > remicade, humira, or enbrel, because we have otherwise hit a dead end. I am > > very scared about these drugs, but also don't want to be in a wheelchair > either. > > I am wondering what everyone's feelings are on these drugs... > > Thank you very much for your help! > > Semalee > > > > Quote Link to comment Share on other sites More sharing options...
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