Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 Spinal agony Sunday July 23, 2006 http://thestar.com.my/health/story.asp?file=/2006/7/23/health/14899119 & sec=healt\ h In conjunction with the 12th APLAR (Asia Pacific League of Associations for Rheumatology) Congress, which will be held on Aug 1-5 at the Kuala Lumpur Convention Centre, KLCC, Kuala Lumpur, we're running a series of articles on rheumatology. This week, we take a look at ankylosing spondylitis. EVERY day, Xilas Ngang wakes up wondering where the pain will be. Today, it could be in his shoulder, tomorrow his knee or his pelvis. If he is fortunate, there will be no pain, but he will feel tired and lack energy to do daily activities. Ngang has ankylosing spondylitis (ankylosing = fusing together; spondylitis = inflammation of the vertebrae), a form of arthritis that mainly affects the joints in the spine. " The pain is kind of like inside the bone, it's very painful, " he says, trying to describe the agony he goes through on days when his disease is " active " . Although 25-year-old Ngang, who works as the executive secretary of MCA's Crisis Relief Squad, is still mobile and leads a normal, functional life, things have certainly changed for him. " I have forgotten how it feels to run, " he says wistfully. Inflamed spine As with all forms of arthritis, ankylosing spondylitis (AS) causes inflammation of the joints. In AS, the inflammation usually occurs in the little joints between the vertebrae of the spine. It usually starts at the sacro-iliac joints that lie between the sacrum and the pelvis. " AS sometimes affects the knees and hips as well, " says consultant rheumatologist Dr Yeap Swan Sim. AS tends to affect more males than females, although it is not known why this occurs. As it is a rare disease, AS often raises puzzled eyebrows among the general public. It affects only one in 200 people in the West, and probably half that figure in Malaysia (estimated). Although its cause remains unknown, AS is believed to have a genetic basis. " People who have AS (about 90%) tend to have the HLA-B27 genetic marker. However, this gene is also present in about 20% of the normal population; this means you can have the gene without having AS, " Dr Yeap explains. Testing for this genetic marker is usually carried out to confirm the diagnosis of AS, not to screen for the disease. Stiffness and pain Youthful, fresh-faced Ngang is the last person you would expect to have a debilitating, chronic joint disease. That is the cruel reality of AS, which strikes down able-bodied, young adults in their prime. " It is most common in young men between the age of 20 and 40, " says Dr Yeap, who has had patients who have suffered back pains on and off, from the age of 15. " I started getting the pains last year. Every two to three months, the pain would come, last for two to three days, and then go away, " says Ngang. Most people with AS first notice that they have a bit of back or neck pain that comes and goes. Then they may progressively get more and more stiff. " The stiffness is caused by the joints (of the spine or neck) fusing together, " says Dr Yeap. The repeated cycles of inflammation and healing causes new bone to develop and fuse the joints together. " In the end stages, their spine (may) become so stiff that they can't bend backwards, forwards or touch their toes. If the stiffness goes to the neck, it becomes more problematic, because they can't turn their neck sideways, can't look up or look down. " The stiffness may also spread to the hips or the knees, making it difficult to walk. If this inflammation is not treated, then it can start to destroy the cartilage and the bones. " This could go on for about five to 10 years before they seek the help of a doctor or a rheumatologist, she adds. Early this year, Ngang started experiencing continuous pain in the various affected joints of his body, making it almost impossible to walk or move at times. Despite the obvious pain, however, most of the doctors who examined him could not discover the problem and told him that it was " nothing " . " The pain is so bad that I cannot walk, and they tell me it's nothing? I cannot accept that, " he relates. After numerous x-rays, blood tests and even an MRI, all the other possibilities were eliminated and he was finally diagnosed with AS. " At least now that I know it's ankylosing spondylitis, I can prepare myself. I know what is causing the pain, what are the effects of the disease and whether it can be cured or not, " says Ngang. Controlling AS There is no cure for AS, a life-long condition that will wax and wane over time. " The mainstay of treatment is painkillers (non-steroidal anti-inflammatory drugs, NSAIDs) to relieve the pain and inflammation, " says Dr Yeap. An equally crucial part of treatment is regular exercise to keep the spine mobile. " Exercise is one of the important things we emphasise - stretching to get the spine mobile and moving. Patients usually prefer if the doctor can give them medicine to make them feel better, " Dr Yeap smiles. " But they have to do the exercises regularly. " " I also have to make sure that my posture is always right, " Ngang says. People with AS have to keep their spines straight and stay as erect as possible, even when sitting or lying down. The medications used in rheumatoid arthritis, namely the disease-modifying anti-rheumatic drugs or DMARDs, can be used if painkillers are unable to control the inflammation. However, Dr Yeap notes that most drugs used in rheumatoid arthritis do not work so well on the spine. " For the spine, the best results so far have been with TNF-alpha inhibitors (etanercept and infliximab). These block the inflammatory pathway, by blocking one of the cytokines called TNF-alpha. These are a breakthrough...unfortunately, you will soon find out that they are very expensive, " says Dr Yeap. All these treatment options, particularly the exercise aspect, are long-term strategies. If the inflammation is not controlled, it can spread to the lungs, the eyes and the heart, causing problems in these organs. However, thanks to modern advances in treatment, AS can be controlled and the risk of complications is greatly reduced. Ups and downs Ngang recalls that when he first learned about AS, he felt like he was at a crossroads. " I didn't know where I was. I didn't know if or when I would recover. I didn't know whether I should work or rest, " he admits. " My employers encouraged me to continue working. They allow me to come in to the office slightly later, and I can rest if the pain is really bad. " He is glad that he is back at work. " If I just rest at home, I will lose motivation. " Life still goes on for him, although he is not as active as he used to be. The pain prohibits him from running or jumping, so he has stopped playing badminton and going to the gym. " See, I look quite normal, right? " he says, walking towards his desk without any noticeable trouble. " But if I wake up with pain in my knee, then I need the tongkat, " he points to the black walking stick resting against the table. Ngang used to go to disaster areas to provide assistance, such as Kedah during the floods (his job involves recruiting and coordinating MCA's crisis relief teams during disasters), but now he is more confined to the desk. Sleep is often elusive for Ngang, who tends to wake up at least two to three times in a night. " There was even a time when I was very scared to go to sleep. You don't know what time you'll wake up. When you wake up, you cannot go back to sleep, and then you'll feel the pain. " There are good days and bad days for him. On a bad day, if his neck is stiff, he will have trouble driving, because he cannot turn his head. " The hardest thing is not knowing when and where the pain will come. I have to take painkillers every day, if (not), the pain will come back and I cannot walk or move at all, " says Ngang, who keeps spare medication in the car, at home and at work. " My doctor has also told me that these painkillers will cause side effects and other problems in the future. I worry about this as well, but I have no choice. " Ngang has adjusted admirably to having AS. " My doctor has told me that this is a lifelong disease, so I have to be prepared, " he says. " With modern treatment, people with AS should be able to lead a reasonably normal life. Quite often, the disease will burn out by itself, " Dr Yeap shares. She advises people who have persistent, unexplained back or neck pain that comes and goes, and lasts for more than six months, to see a rheumatologist, particularly if they have a family history of ankylosing spondylitis. Note: The 12th APLAR will see members of international rheumatology societies from around the world gather to share their experiences in the field of rheumatology. Some of the most prominent rheumatologists from all over the world will be in Kuala Lumpur to offer their insights and share their experiences with their colleagues. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 Thanks for posting this Georgina. I have forwarded it to Chris' email. I think he needs to educate himself on the disease to make better decisions about his health care. Hope all is well with you and yours, Michele ( 19, spondy) ________________________________ From: [mailto: ] On Behalf Of Georgina Sent: Monday, July 24, 2006 1:18 AM *JRA List Subject: Spinal agony: ankylosing spondylitis Spinal agony Sunday July 23, 2006 http://thestar.com.my/health/story.asp?file=/2006/7/23/health/14899119 & s ec=health <http://thestar.com.my/health/story.asp?file=/2006/7/23/health/14899119 & sec=health> In conjunction with the 12th APLAR (Asia Pacific League of Associations for Rheumatology) Congress, which will be held on Aug 1-5 at the Kuala Lumpur Convention Centre, KLCC, Kuala Lumpur, we're running a series of articles on rheumatology. This week, we take a look at ankylosing spondylitis. EVERY day, Xilas Ngang wakes up wondering where the pain will be. Today, it could be in his shoulder, tomorrow his knee or his pelvis. If he is fortunate, there will be no pain, but he will feel tired and lack energy to do daily activities. Ngang has ankylosing spondylitis (ankylosing = fusing together; spondylitis = inflammation of the vertebrae), a form of arthritis that mainly affects the joints in the spine. " The pain is kind of like inside the bone, it's very painful, " he says, trying to describe the agony he goes through on days when his disease is " active " . Although 25-year-old Ngang, who works as the executive secretary of MCA's Crisis Relief Squad, is still mobile and leads a normal, functional life, things have certainly changed for him. " I have forgotten how it feels to run, " he says wistfully. Inflamed spine As with all forms of arthritis, ankylosing spondylitis (AS) causes inflammation of the joints. In AS, the inflammation usually occurs in the little joints between the vertebrae of the spine. It usually starts at the sacro-iliac joints that lie between the sacrum and the pelvis. " AS sometimes affects the knees and hips as well, " says consultant rheumatologist Dr Yeap Swan Sim. AS tends to affect more males than females, although it is not known why this occurs. As it is a rare disease, AS often raises puzzled eyebrows among the general public. It affects only one in 200 people in the West, and probably half that figure in Malaysia (estimated). Although its cause remains unknown, AS is believed to have a genetic basis. " People who have AS (about 90%) tend to have the HLA-B27 genetic marker. However, this gene is also present in about 20% of the normal population; this means you can have the gene without having AS, " Dr Yeap explains. Testing for this genetic marker is usually carried out to confirm the diagnosis of AS, not to screen for the disease. Stiffness and pain Youthful, fresh-faced Ngang is the last person you would expect to have a debilitating, chronic joint disease. That is the cruel reality of AS, which strikes down able-bodied, young adults in their prime. " It is most common in young men between the age of 20 and 40, " says Dr Yeap, who has had patients who have suffered back pains on and off, from the age of 15. " I started getting the pains last year. Every two to three months, the pain would come, last for two to three days, and then go away, " says Ngang. Most people with AS first notice that they have a bit of back or neck pain that comes and goes. Then they may progressively get more and more stiff. " The stiffness is caused by the joints (of the spine or neck) fusing together, " says Dr Yeap. The repeated cycles of inflammation and healing causes new bone to develop and fuse the joints together. " In the end stages, their spine (may) become so stiff that they can't bend backwards, forwards or touch their toes. If the stiffness goes to the neck, it becomes more problematic, because they can't turn their neck sideways, can't look up or look down. " The stiffness may also spread to the hips or the knees, making it difficult to walk. If this inflammation is not treated, then it can start to destroy the cartilage and the bones. " This could go on for about five to 10 years before they seek the help of a doctor or a rheumatologist, she adds. Early this year, Ngang started experiencing continuous pain in the various affected joints of his body, making it almost impossible to walk or move at times. Despite the obvious pain, however, most of the doctors who examined him could not discover the problem and told him that it was " nothing " . " The pain is so bad that I cannot walk, and they tell me it's nothing? I cannot accept that, " he relates. After numerous x-rays, blood tests and even an MRI, all the other possibilities were eliminated and he was finally diagnosed with AS. " At least now that I know it's ankylosing spondylitis, I can prepare myself. I know what is causing the pain, what are the effects of the disease and whether it can be cured or not, " says Ngang. Controlling AS There is no cure for AS, a life-long condition that will wax and wane over time. " The mainstay of treatment is painkillers (non-steroidal anti-inflammatory drugs, NSAIDs) to relieve the pain and inflammation, " says Dr Yeap. An equally crucial part of treatment is regular exercise to keep the spine mobile. " Exercise is one of the important things we emphasise - stretching to get the spine mobile and moving. Patients usually prefer if the doctor can give them medicine to make them feel better, " Dr Yeap smiles. " But they have to do the exercises regularly. " " I also have to make sure that my posture is always right, " Ngang says. People with AS have to keep their spines straight and stay as erect as possible, even when sitting or lying down. The medications used in rheumatoid arthritis, namely the disease-modifying anti-rheumatic drugs or DMARDs, can be used if painkillers are unable to control the inflammation. However, Dr Yeap notes that most drugs used in rheumatoid arthritis do not work so well on the spine. " For the spine, the best results so far have been with TNF-alpha inhibitors (etanercept and infliximab). These block the inflammatory pathway, by blocking one of the cytokines called TNF-alpha. These are a breakthrough...unfortunately, you will soon find out that they are very expensive, " says Dr Yeap. All these treatment options, particularly the exercise aspect, are long-term strategies. If the inflammation is not controlled, it can spread to the lungs, the eyes and the heart, causing problems in these organs. However, thanks to modern advances in treatment, AS can be controlled and the risk of complications is greatly reduced. Ups and downs Ngang recalls that when he first learned about AS, he felt like he was at a crossroads. " I didn't know where I was. I didn't know if or when I would recover. I didn't know whether I should work or rest, " he admits. " My employers encouraged me to continue working. They allow me to come in to the office slightly later, and I can rest if the pain is really bad. " He is glad that he is back at work. " If I just rest at home, I will lose motivation. " Life still goes on for him, although he is not as active as he used to be. The pain prohibits him from running or jumping, so he has stopped playing badminton and going to the gym. " See, I look quite normal, right? " he says, walking towards his desk without any noticeable trouble. " But if I wake up with pain in my knee, then I need the tongkat, " he points to the black walking stick resting against the table. Ngang used to go to disaster areas to provide assistance, such as Kedah during the floods (his job involves recruiting and coordinating MCA's crisis relief teams during disasters), but now he is more confined to the desk. Sleep is often elusive for Ngang, who tends to wake up at least two to three times in a night. " There was even a time when I was very scared to go to sleep. You don't know what time you'll wake up. When you wake up, you cannot go back to sleep, and then you'll feel the pain. " There are good days and bad days for him. On a bad day, if his neck is stiff, he will have trouble driving, because he cannot turn his head. " The hardest thing is not knowing when and where the pain will come. I have to take painkillers every day, if (not), the pain will come back and I cannot walk or move at all, " says Ngang, who keeps spare medication in the car, at home and at work. " My doctor has also told me that these painkillers will cause side effects and other problems in the future. I worry about this as well, but I have no choice. " Ngang has adjusted admirably to having AS. " My doctor has told me that this is a lifelong disease, so I have to be prepared, " he says. " With modern treatment, people with AS should be able to lead a reasonably normal life. Quite often, the disease will burn out by itself, " Dr Yeap shares. She advises people who have persistent, unexplained back or neck pain that comes and goes, and lasts for more than six months, to see a rheumatologist, particularly if they have a family history of ankylosing spondylitis. Note: The 12th APLAR will see members of international rheumatology societies from around the world gather to share their experiences in the field of rheumatology. Some of the most prominent rheumatologists from all over the world will be in Kuala Lumpur to offer their insights and share their experiences with their colleagues. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 Hi Michele, I hope he'll be open to at least reading it. Josh, at 17, now thinks he knows better than most people all there is to know about the systemic type of juvenile arthritis. To quote Bob Marley, " He who feels it, knows it " He's still pleased that I'm helping to share the latest arthritis related news and stories through our online group but very few of the articles seem to interest him - except the ones featuring children from this group, whose names he's already heard. Last year he needed info for a class project so he browsed through the archives and read up on some stuff ... but he seems a bit reluctant and somehow not quite as interested in it as I am. I told him about the kids email group and he was not at all into it, even though I told him his experiences might really help others. He wrote up a speech for a AF fundraiser meeting that came from the heart and he felt good about speaking in front of that group but it's not something he wants to be involved in on a daily basis. He's busy doing his own thing. He's doing good, though. Has been having a few bothersome joints, elbows and knees mostly, but not too bad. They seemed to start 'acting up' once he switched from Indomethacin to Sulindac. Helen was right. Hawaii just took a little bit longer to use up it's reserves but the shortage eventually hit us too and he had to try something new. The doctor told him to take twice the starting dose to see if that helped better but when I looked at his pill box, I saw that he was leaving 1 of the pills untouched. That may change though because last night he came in my room to show me the rash he had on his side and back. I'm just keeping my fingers crossed that ALL will be well by next week, when school starts for the kids here! Aloha, Georgina Spinal agony: ankylosing spondylitis Spinal agony Sunday July 23, 2006 http://thestar.com.my/health/story.asp?file=/2006/7/23/health/14899119 & s ec=health <http://thestar.com.my/health/story.asp?file=/2006/7/23/health/14899119 & sec=health> In conjunction with the 12th APLAR (Asia Pacific League of Associations for Rheumatology) Congress, which will be held on Aug 1-5 at the Kuala Lumpur Convention Centre, KLCC, Kuala Lumpur, we're running a series of articles on rheumatology. This week, we take a look at ankylosing spondylitis. EVERY day, Xilas Ngang wakes up wondering where the pain will be. Today, it could be in his shoulder, tomorrow his knee or his pelvis. If he is fortunate, there will be no pain, but he will feel tired and lack energy to do daily activities. Ngang has ankylosing spondylitis (ankylosing = fusing together; spondylitis = inflammation of the vertebrae), a form of arthritis that mainly affects the joints in the spine. " The pain is kind of like inside the bone, it's very painful, " he says, trying to describe the agony he goes through on days when his disease is " active " . Although 25-year-old Ngang, who works as the executive secretary of MCA's Crisis Relief Squad, is still mobile and leads a normal, functional life, things have certainly changed for him. " I have forgotten how it feels to run, " he says wistfully. Inflamed spine As with all forms of arthritis, ankylosing spondylitis (AS) causes inflammation of the joints. In AS, the inflammation usually occurs in the little joints between the vertebrae of the spine. It usually starts at the sacro-iliac joints that lie between the sacrum and the pelvis. " AS sometimes affects the knees and hips as well, " says consultant rheumatologist Dr Yeap Swan Sim. AS tends to affect more males than females, although it is not known why this occurs. As it is a rare disease, AS often raises puzzled eyebrows among the general public. It affects only one in 200 people in the West, and probably half that figure in Malaysia (estimated). Although its cause remains unknown, AS is believed to have a genetic basis. " People who have AS (about 90%) tend to have the HLA-B27 genetic marker. However, this gene is also present in about 20% of the normal population; this means you can have the gene without having AS, " Dr Yeap explains. Testing for this genetic marker is usually carried out to confirm the diagnosis of AS, not to screen for the disease. Stiffness and pain Youthful, fresh-faced Ngang is the last person you would expect to have a debilitating, chronic joint disease. That is the cruel reality of AS, which strikes down able-bodied, young adults in their prime. " It is most common in young men between the age of 20 and 40, " says Dr Yeap, who has had patients who have suffered back pains on and off, from the age of 15. " I started getting the pains last year. Every two to three months, the pain would come, last for two to three days, and then go away, " says Ngang. Most people with AS first notice that they have a bit of back or neck pain that comes and goes. Then they may progressively get more and more stiff. " The stiffness is caused by the joints (of the spine or neck) fusing together, " says Dr Yeap. The repeated cycles of inflammation and healing causes new bone to develop and fuse the joints together. " In the end stages, their spine (may) become so stiff that they can't bend backwards, forwards or touch their toes. If the stiffness goes to the neck, it becomes more problematic, because they can't turn their neck sideways, can't look up or look down. " The stiffness may also spread to the hips or the knees, making it difficult to walk. If this inflammation is not treated, then it can start to destroy the cartilage and the bones. " This could go on for about five to 10 years before they seek the help of a doctor or a rheumatologist, she adds. Early this year, Ngang started experiencing continuous pain in the various affected joints of his body, making it almost impossible to walk or move at times. Despite the obvious pain, however, most of the doctors who examined him could not discover the problem and told him that it was " nothing " . " The pain is so bad that I cannot walk, and they tell me it's nothing? I cannot accept that, " he relates. After numerous x-rays, blood tests and even an MRI, all the other possibilities were eliminated and he was finally diagnosed with AS. " At least now that I know it's ankylosing spondylitis, I can prepare myself. I know what is causing the pain, what are the effects of the disease and whether it can be cured or not, " says Ngang. Controlling AS There is no cure for AS, a life-long condition that will wax and wane over time. " The mainstay of treatment is painkillers (non-steroidal anti-inflammatory drugs, NSAIDs) to relieve the pain and inflammation, " says Dr Yeap. An equally crucial part of treatment is regular exercise to keep the spine mobile. " Exercise is one of the important things we emphasise - stretching to get the spine mobile and moving. Patients usually prefer if the doctor can give them medicine to make them feel better, " Dr Yeap smiles. " But they have to do the exercises regularly. " " I also have to make sure that my posture is always right, " Ngang says. People with AS have to keep their spines straight and stay as erect as possible, even when sitting or lying down. The medications used in rheumatoid arthritis, namely the disease-modifying anti-rheumatic drugs or DMARDs, can be used if painkillers are unable to control the inflammation. However, Dr Yeap notes that most drugs used in rheumatoid arthritis do not work so well on the spine. " For the spine, the best results so far have been with TNF-alpha inhibitors (etanercept and infliximab). These block the inflammatory pathway, by blocking one of the cytokines called TNF-alpha. These are a breakthrough...unfortunately, you will soon find out that they are very expensive, " says Dr Yeap. All these treatment options, particularly the exercise aspect, are long-term strategies. If the inflammation is not controlled, it can spread to the lungs, the eyes and the heart, causing problems in these organs. However, thanks to modern advances in treatment, AS can be controlled and the risk of complications is greatly reduced. Ups and downs Ngang recalls that when he first learned about AS, he felt like he was at a crossroads. " I didn't know where I was. I didn't know if or when I would recover. I didn't know whether I should work or rest, " he admits. " My employers encouraged me to continue working. They allow me to come in to the office slightly later, and I can rest if the pain is really bad. " He is glad that he is back at work. " If I just rest at home, I will lose motivation. " Life still goes on for him, although he is not as active as he used to be. The pain prohibits him from running or jumping, so he has stopped playing badminton and going to the gym. " See, I look quite normal, right? " he says, walking towards his desk without any noticeable trouble. " But if I wake up with pain in my knee, then I need the tongkat, " he points to the black walking stick resting against the table. Ngang used to go to disaster areas to provide assistance, such as Kedah during the floods (his job involves recruiting and coordinating MCA's crisis relief teams during disasters), but now he is more confined to the desk. Sleep is often elusive for Ngang, who tends to wake up at least two to three times in a night. " There was even a time when I was very scared to go to sleep. You don't know what time you'll wake up. When you wake up, you cannot go back to sleep, and then you'll feel the pain. " There are good days and bad days for him. On a bad day, if his neck is stiff, he will have trouble driving, because he cannot turn his head. " The hardest thing is not knowing when and where the pain will come. I have to take painkillers every day, if (not), the pain will come back and I cannot walk or move at all, " says Ngang, who keeps spare medication in the car, at home and at work. " My doctor has also told me that these painkillers will cause side effects and other problems in the future. I worry about this as well, but I have no choice. " Ngang has adjusted admirably to having AS. " My doctor has told me that this is a lifelong disease, so I have to be prepared, " he says. " With modern treatment, people with AS should be able to lead a reasonably normal life. Quite often, the disease will burn out by itself, " Dr Yeap shares. She advises people who have persistent, unexplained back or neck pain that comes and goes, and lasts for more than six months, to see a rheumatologist, particularly if they have a family history of ankylosing spondylitis. Note: The 12th APLAR will see members of international rheumatology societies from around the world gather to share their experiences in the field of rheumatology. Some of the most prominent rheumatologists from all over the world will be in Kuala Lumpur to offer their insights and share their experiences with their colleagues. Quote Link to comment Share on other sites More sharing options...
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