Information & encouragement to fight RA
Two weeks ago I attended a dinner program for RA patient consumers. The purpose of the program was to educate us to be informed consumers who have a voice in deciding on our health care. It was an incredible program that provided very useful resources and information. Just like a diabetic measures their A1C, RA has it’s own quantifiable number to assess disease progress through a composite score. The online calculator gives 4 different calculators to use depending on what measures your doctor is monitoring. Here it is: http://www.t2t-ra.com/target-to-treat-toolkit/clinical-assessment-tools
The doctor and nurse who lead this program also said that the next time you go into your doctor, ask them what they are using to measure your disease activity. Then, request copies of your lab work, assess your tender and swollen joints and calculate your own number. I see my doctor in 2 weeks and will definitely be doing all of this and more.
While on one hand, I’m glad to hear of more advances in the study of people with RA, when I go in to see my Rheumatologist, I can’t afford the extra $$ these new tests would cost under the insurance I have.
I realize that means she doesn’t have all the best information to help me manage my RA, but RA is a lifetime thing, I can’t go broke now.
Even more than lack of information and good treatments, costs prohibit getting good quality care.
(probably whining because I have a visit coming up)
These new tests aren’t usually done by the docs in the field yet anyway – they are research studies. The best disease activity measures we have now are patient outcome measures which would be at no cost – they are questionnaires that take only moments for docs and patients, but they are seldom used. Here’s one blog post about that: http://rawarrior.com/the-haq-the-rapid-the-rest-3-reasons-its-a-moot-point/
Good luck on your upcoming visit.
Kelly, I appreciate hearing your experience with this. I’m not sure what new tests you’re talking about that are new and under research, but my doctor already does the blood work regularly. My doctor already tests my ESR and anti-CCP every 12 weeks during my blood draw. She uses a HAQ of course, which up until now I didn’t know exactly what the scoring rubric was.
The model I provided a link to is a global initiative that has been used with other chronic diseases with success. I’d like to think that any forward progress on such a complex chronic condition is forward progress. One thing I learned is that I can assess this on my own and get a composite score without my doctor if need be. The other thing that we were taught how to assess on our own were tender and swollen joints (28). I’ll remain optimistic and educate myself as much as possible to heal myself from within however I can, even on the the most painful, incapacitating days.
The tests they talked about were the standard blood tests that the rheumatologist should be doing every 3-4 months. Does your insurance not cover those? I am so, so very thankful that I have great insurance, even though I still pay thousands of dollars annually for my care in addition to. At the very least, ask your doctor what they do to measure your RA disease progression. Knowledge is powerful.
What about people, like me (maybe I’m the only one), that the joints do not hurt to squeeze but the pain is deep and throbbing? Just saying that everybody’s pain is so different. My rheumy thinks I am fine because I can walk on my tip toes and she can squeeze my joints and there is no visible pain. The pain is DEEP inside my joints. Wish I could explain it!
I understand what you’re talking about, Teresa. My doctor also diagnosed me with fibromyalgia, which covers similar symptoms to what you’re describing. However, the doctors still tend to work in silos and treat the symptoms of one thing, ignoring the rest of it. It’s very frustrating and not at all patient-centered care. If you’re not satisfied, perhaps you could seek another opinion?
The really exciting thing about this is that, for people lie me who have “normal” lab results consistently, these new tests might be a better way to measure disease activity and, hopefully, medication efficacy rather than having to rely solely on how we feel. Labs and imaging aren’t telling my doctor anything about what my body is doing to itself. I know I’m lucky to have a doctor that believes me and is willing to go on what I say rather than what my labs say. Not everyone is so fortunate. Having another way to potentially measure disease activity objectively, even in the absence of abnormal labs, imaging or any other test that can indicate the presence of RA, is incredibly exciting and encouraging. It’s easy to get discouraged by the seeming snail’s pace in the advancement of research to diagnose and treat RA. If this LSC technology can potentially be used to more accurately diagnose, it could be a Godsend for those of us who have to weigh the pros and cons of submitting to surgery just to prove we actually have the disease. If, of course, this new test proves as useful as it sounds. I’ll cross fingers and toes, even if I have to do so in my mind.
Several years ago when I came down with RA I came to this web site. I mentioned that daily working out had help me immensely. I was Criticized by the sites host for suggesting exercises as a utopia for suffers. She said a lot of people aren’t able to exercise so I should not say this. Well Today I am exercising 2 hours six days a week and I am fine with no wasting and my weight and strength is back in fact better. I would also Suggest this web site: http://www.researchgate.net/publication/221922369_Resistance_Training_for_Patients_with_Rheumatoid_Arthritis_Effects_on_Disability_Rheumatoid_Cachexia_and_Osteoporosis_and_Recommendations_for_Prescription.
She was wrong every one with RA should work out as a means to heal and gain strength. I had an advantage of working out prior to coming down with RA. However, this is not necessary to gain from weight and aerobic training.
It could not be more obvious that all people with rheumatoid disease (PRD) are not alike. What you can do has no logical implication for another PRD.
Many PRD, sadly, would give almost anything to be able to button our pants properly or brush our hair, much less lift weights or run.
BTW, your comment was posted more than once, on different pages, verbatim, which is one of the definitions of “spam.”
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