News and information about the National Data Bank for Rheumatic Diseases (NDB) and arthritis and rheumatology research. Written for NDB participants and anyone with a rheumatic disease.
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Thursday, January 29, 2004
WebQuest or Paper? Did you get both? Which should you do?
If you’ve received both the paper version of the latest questionnaire and the e-mail link to the online WebQuest, you might be wondering which you’re supposed to do. We would prefer that you use the WebQuest. It’s easier and faster for both you and our staff. After the first time you use it, it will remember your medications.
If you already filled out and sent in the paper questionnaire before you saw your WebQuest e-mail, it’s OK. You can ignore the e-mail if you like, or go ahead and do the WebQuest as well.
If you choose to do both, we will use your WebQuest answers, not the paper questionnaire answers, so be sure to fill it out completely.
On the other hand, if you filled out the WebQuest and then got the paper questionnaire in the mail, please recycle or discard it. You don’t need to send it back to us. Each copy is individually numbered, so we can’t reuse it.
What if you didn’t get the WebQuest link and you wanted it, or you discovered you can’t use WebQuest on your computer? Please let us know in an e-mail or phone call. If you want to use WebQuest, we’ll send you the link. And, we may be able to help you with adjusting or updating your computer software so you can use WebQuest.
Please note that right now, WebQuest does not work with WebTV systems. We are checking into WebTV for future questionnaires.
Thanks for all your efforts. We continue to work to make the questionnaire as easy as possible for you.
If you’ve received both the paper version of the latest questionnaire and the e-mail link to the online WebQuest, you might be wondering which you’re supposed to do. We would prefer that you use the WebQuest. It’s easier and faster for both you and our staff. After the first time you use it, it will remember your medications.
If you already filled out and sent in the paper questionnaire before you saw your WebQuest e-mail, it’s OK. You can ignore the e-mail if you like, or go ahead and do the WebQuest as well.
If you choose to do both, we will use your WebQuest answers, not the paper questionnaire answers, so be sure to fill it out completely.
On the other hand, if you filled out the WebQuest and then got the paper questionnaire in the mail, please recycle or discard it. You don’t need to send it back to us. Each copy is individually numbered, so we can’t reuse it.
What if you didn’t get the WebQuest link and you wanted it, or you discovered you can’t use WebQuest on your computer? Please let us know in an e-mail or phone call. If you want to use WebQuest, we’ll send you the link. And, we may be able to help you with adjusting or updating your computer software so you can use WebQuest.
Please note that right now, WebQuest does not work with WebTV systems. We are checking into WebTV for future questionnaires.
Thanks for all your efforts. We continue to work to make the questionnaire as easy as possible for you.
Arthritis Foundation wants RA patients included in project
"The recently approved Medicare reform legislation authorizes a demonstration project to expand Medicare coverage for self-injected biological therapies. These therapies often deliver significant relief for some of the nation's most disabling diseases, like rheumatoid arthritis....Unfortunately, despite Congressional intent, the Medicare reform bill did not specifically mention the inclusion of beneficiaries living with rheumatoid arthritis.
"Your letter to U.S. Department of Health and Human Services can be instrumental in persuading Centers for Medicare and Medicaid Services to cover self-injected biological therapies for rheumatoid arthritis under the Medicare program. " - send and e-mail or letter if you agree, using the AF website. Arthritis Foundation-- Legislative Alerts and Updates
"The recently approved Medicare reform legislation authorizes a demonstration project to expand Medicare coverage for self-injected biological therapies. These therapies often deliver significant relief for some of the nation's most disabling diseases, like rheumatoid arthritis....Unfortunately, despite Congressional intent, the Medicare reform bill did not specifically mention the inclusion of beneficiaries living with rheumatoid arthritis.
"Your letter to U.S. Department of Health and Human Services can be instrumental in persuading Centers for Medicare and Medicaid Services to cover self-injected biological therapies for rheumatoid arthritis under the Medicare program. " - send and e-mail or letter if you agree, using the AF website. Arthritis Foundation-- Legislative Alerts and Updates
Wednesday, January 28, 2004
Joint Dilemma
A doctor considers waiting for clear scientific proof that glucosamine slows osteoarthritis, or having surgery to save her knees. - from the Washington Post
Joint Dilemma (washingtonpost.com)
A doctor considers waiting for clear scientific proof that glucosamine slows osteoarthritis, or having surgery to save her knees. - from the Washington Post
Joint Dilemma (washingtonpost.com)
Friday, January 23, 2004
Staying fit reduces risk of arthritis
"Research conducted by Statistics Canada reveals that being obese, meaning that 30 per cent or more of your body weight consists of fat, increases your odds of developing arthritis by 60 per cent." - from the Globe and Mail.
The Globe and Mail
"Research conducted by Statistics Canada reveals that being obese, meaning that 30 per cent or more of your body weight consists of fat, increases your odds of developing arthritis by 60 per cent." - from the Globe and Mail.
The Globe and Mail
Thursday, January 22, 2004
Before you send in your tax return....
A retired accountant with RA discusses many possible ways to deduct your medical expenses. - from about.arthritis.com
Deducting Arthritis On Your Income Tax
A retired accountant with RA discusses many possible ways to deduct your medical expenses. - from about.arthritis.com
Deducting Arthritis On Your Income Tax
Wednesday, January 21, 2004
Canadian Researchers find Doctors Over-Diagnose Fibromyalgia
"Referring doctors frequently misdiagnose fibromyalgia, Canadian researchers have found. This common mistake, mostly observed to be over-diagnosis, might help to explain the high rates of fibromyalgia currently reported" in some Canadian Hospitals. - from ImmuneSupport.com
Doctors Over-Diagnose Fibromyalgia
The Abstract from the journal Rheumatology is here.
"Referring doctors frequently misdiagnose fibromyalgia, Canadian researchers have found. This common mistake, mostly observed to be over-diagnosis, might help to explain the high rates of fibromyalgia currently reported" in some Canadian Hospitals. - from ImmuneSupport.com
Doctors Over-Diagnose Fibromyalgia
The Abstract from the journal Rheumatology is here.
Thursday, January 15, 2004
What's the difference between fatigue and being tired?
The new survey asks about fatigue and being tired. One survey taker wants to know the difference:
"I like the new format, but do have one comment about some of the repetitious questions. In the section that asks about fatigue, why does it also ask if one is tired? It seems to me if I have fatigue, I am definitely tired!"
Read the answer in the forum: National Databank Forum: January Questionnaire:
The new survey asks about fatigue and being tired. One survey taker wants to know the difference:
"I like the new format, but do have one comment about some of the repetitious questions. In the section that asks about fatigue, why does it also ask if one is tired? It seems to me if I have fatigue, I am definitely tired!"
Read the answer in the forum: National Databank Forum: January Questionnaire:
Study: Vitamin D may prevent RA and MS
20-year studies of nurses show that women with higher intake of Vitamin D had lower incidence of rheumatoid arthritis and multiple sclerosis. But, researchers don't know why. The vitamin may affect the immune system. - from CNN and the journal Neurology Study: Vitamin D may help prevent MS - Jan. 13, 2004
20-year studies of nurses show that women with higher intake of Vitamin D had lower incidence of rheumatoid arthritis and multiple sclerosis. But, researchers don't know why. The vitamin may affect the immune system. - from CNN and the journal Neurology Study: Vitamin D may help prevent MS - Jan. 13, 2004
Tuesday, January 13, 2004
Soft Drinks and Calcium
"I have heard that carbonated drinks take calcium out of your bones. Should I worry because I drink a lot of seltzer?" - Q & A from the New York Times The answer is here.
"I have heard that carbonated drinks take calcium out of your bones. Should I worry because I drink a lot of seltzer?" - Q & A from the New York Times The answer is here.
Thursday, January 08, 2004
Changes in the January 2004 questionnaire - for NDB participants
Happy New Year 2004!
As always, we are trying hard to make the questionnaire simple and straightforward without losing any critical information we need to continue research. Below are a few changes you can expect in the January 2004 questionnaire:
1) Neck pain is a common problem for many people. We've added a few questions to understand how it affects you.
2) Everyone gets colds and flu. But do arthritis treatments have anything to do with these problems? We have added a few question to better study infections, including flu, colds and chronic bronchitis. We also want to know if you were treated with intravenous (IV) antibiotics for some of the infections listed.
3) We've dropped a whole series of questions dealing with depression and anxiety that appeared twice in past questionnaires.
If you have any questions or need some help completing the questionnaire please email us at info@arthritis-research.org or call us at 800-323-5871 x133 or x140.
Happy New Year 2004!
As always, we are trying hard to make the questionnaire simple and straightforward without losing any critical information we need to continue research. Below are a few changes you can expect in the January 2004 questionnaire:
1) Neck pain is a common problem for many people. We've added a few questions to understand how it affects you.
2) Everyone gets colds and flu. But do arthritis treatments have anything to do with these problems? We have added a few question to better study infections, including flu, colds and chronic bronchitis. We also want to know if you were treated with intravenous (IV) antibiotics for some of the infections listed.
3) We've dropped a whole series of questions dealing with depression and anxiety that appeared twice in past questionnaires.
If you have any questions or need some help completing the questionnaire please email us at info@arthritis-research.org or call us at 800-323-5871 x133 or x140.
Wednesday, January 07, 2004
Occupational therapy may not help early rheumatoid arthritis
"Occupational therapy has been shown to help people who have had rheumatoid arthritis for several years or longer, but the results of a new study suggest that people in the early stages of the disease do not achieve any functional benefits.
Occupational therapy includes both therapeutic and educational interventions that are designed to help people adjust to rheumatoid arthritis and improve or maintain their daily activities. One of the aims of occupational therapy for rheumatoid arthritis is to help people maintain hand function." - Reuters Health reports on an Annals of the Rheumatic Diseases article. MEDLINEplus: Therapy May Not Help Early Rheumatoid Arthritis
"Occupational therapy has been shown to help people who have had rheumatoid arthritis for several years or longer, but the results of a new study suggest that people in the early stages of the disease do not achieve any functional benefits.
Occupational therapy includes both therapeutic and educational interventions that are designed to help people adjust to rheumatoid arthritis and improve or maintain their daily activities. One of the aims of occupational therapy for rheumatoid arthritis is to help people maintain hand function." - Reuters Health reports on an Annals of the Rheumatic Diseases article. MEDLINEplus: Therapy May Not Help Early Rheumatoid Arthritis
Monday, January 05, 2004
Questions for young RA patients in NDB surveys?
"It would be neat to see questions addressing issues for people who gotten rheumatoid arthritis at an early age (I've had RA since age 24).... I remember asking a stewardess (very nicely) if she could open my bottle of water, and I got a reply 'What, you can't do it yourself?'....I'm very worried about discrimination in the work place." Join this discussion in the NDB Forums
"It would be neat to see questions addressing issues for people who gotten rheumatoid arthritis at an early age (I've had RA since age 24).... I remember asking a stewardess (very nicely) if she could open my bottle of water, and I got a reply 'What, you can't do it yourself?'....I'm very worried about discrimination in the work place." Join this discussion in the NDB Forums
Experimental drug reduces RA symptoms says manufacturer
Isis Pharmaceuticals plans to start Phase II trials of its new drug, ISIS104838, which is designed to work at the genetic level to block the production of disease-causing proteins. - from the New York Times
Isis: Drug Reduced Symptoms in Trial
Isis Pharmaceuticals plans to start Phase II trials of its new drug, ISIS104838, which is designed to work at the genetic level to block the production of disease-causing proteins. - from the New York Times
Isis: Drug Reduced Symptoms in Trial
Friday, January 02, 2004
Back pain sufferers' health care costs 60 percent higher
"Per-capita expenditures were generally higher for those who were older, female, white, medically insured, or suffered from disc disorders." -from the journal Spine (abstract - payment require to view full article)
Estimates and Patterns of Direct Health Care Expenditures Among Individuals With Back Pain in the United States
"Per-capita expenditures were generally higher for those who were older, female, white, medically insured, or suffered from disc disorders." -from the journal Spine (abstract - payment require to view full article)
Estimates and Patterns of Direct Health Care Expenditures Among Individuals With Back Pain in the United States
Study shows Humira is safely combined with other therapy
from the Journal of Rheumatology, as summarized by the Johns Hopkins Arthritis Center.
Adalimumab (Humira®) is Safe and Effective When Administered Concomitantly with Standard Anti-Rheumatic Therapy for the Treatment of Rheumatoid Arthritis (RA)
from the Journal of Rheumatology, as summarized by the Johns Hopkins Arthritis Center.
Adalimumab (Humira®) is Safe and Effective When Administered Concomitantly with Standard Anti-Rheumatic Therapy for the Treatment of Rheumatoid Arthritis (RA)
Thursday, January 01, 2004
Atherosclerosis is the leading cause of death for lupus patients
A Cornell study published in the New England Journal of Medicine says Lupus patients were 140 percent more likely to have atherosclerosis than people in comparable health without Lupus.
"The study suggests that doctors treating people for lupus should consider being more aggressive about treating atherosclerosis." -- from the New York Times
Vital Signs: At Risk: Tricky Lupus Goes for the Heart
A Cornell study published in the New England Journal of Medicine says Lupus patients were 140 percent more likely to have atherosclerosis than people in comparable health without Lupus.
"The study suggests that doctors treating people for lupus should consider being more aggressive about treating atherosclerosis." -- from the New York Times
Vital Signs: At Risk: Tricky Lupus Goes for the Heart
Now available for your support group or arthritis meetings....Our new pamphlets explain what we do and how you and can help. Each one has a postage-paid postcard to request more information or join the project. The pamphlets and a small table-top stand are available free from the NDB. Just send us an email!