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i believe i am in remission as i have no more symptom other than one tender joint once every 2-3 month, not even inflammed and usually finished the next day. For 2 years now.
All my blood tests are fine
My questions are:
– how long do you have to have no symptom to be considered “remission”
-if i stil take low dose of metotrexate, does it still qualify for remission?
-how do i know when i do not need to take it anymore?
I think this is an AYD (ask your doctor) question. None of the ACR or research studies answer these questions.
My answer to the MTX question is, as long as you are not having major side effects, you might want to think 5 or 6 times before you quit taking it. If a small dose is all that is required to keep you in remission, it is possible that omitting that small dose might just put you back into flaring. That would be NO fun!
Dear Isabelle,
Of course Elizabeth is right that you should talk about this with your doctor. From what I’ve read, I can say that there may not be any “safe” time for RA patients to completely end medical treatment. True and lasting remission is still considered by most to be rare and fragile. Maybe your doctor could lower your dose gradually, but yes a label of “clinical remission” does still include treatment in many patients. As far as “how long,” I believe from the discussion at ACR they decided to not make the definition dependent on time.
Mostly, I THANK God, Isabelle that you are doing so well. Enjoy & I pray it lasts forever.
There is a big difference between Remission and CURED. Remission is simply the submission of the disease. If you take away the thing that is keeping that disease in check, it will come back much stronger than before. You WILL be able to return to remission, but it will take heavier doses of the drug to get there, before you can go back on a maintenance level. Do not toy with taking yourself off completely. Altho I do commend you for reducing the amount of drugs taken, in order to save yourself from the side effects.
Kelly,
Now I see why you were inquiring about CRP.
The sentence from the ACR press release above that I zeroed in on is:
“However, there has been no widely-used definition of remission that is stringent, but achievable, and that could be applied uniformly as an outcome measure in clinical trials.”
Operative words are “applied uniformly”.
There is tension between Evidence Based Medicine (EBM) (population approach) and Personalized Medicine (PM) (individualized approach) that results in a tug of war among clinicians and scientists about best practice methods. I tweeted about this on 2/8/11 in regard to a JAMA Commentary by @murzee. Most scientists I know would favor PM, since they understand that human physiology is too complex to make sweeping generalizations, in this instance- about RA patients entering remission. Such generalizations have thwarted clinical progress for decades, which is the point that @murzee was making in her JAMA Commentary. The best example of such a failure of CTs is with Alzheimer Disease, where many CTs conducted prior to 2010 involving anti-beta-amyloid antibodies were nulllified by the misunderstanding that by the time AD patients were losing their memories, the damage was already done and it was too late for the targeted disruption of beta-amyloid. It’s quite likely that such a therapy must be given ~ 20 years PRIOR to the development of cognitive difficulties. Multi-millions of tax payers’ $$ wasted.
Call me skeptical on these new ACR guidelines. I’m neither an MD nor rheumatologist, but if I had to guess, I would place RA research in a similar period as that of AD research >10 years ago. Hopefully, I’m dead wrong.
Bob, your input is so appreciated. Yes, you aren’t an RA patient or doctor, but we can’t solve this alone. Genetics experts like you may turn out to be our best friends outside of the rheumatology family. I’m spending a lot of time looking at the EBM models and arguements w/ regard to RA lately. The principle is lovely, but what if the science has not caught up yet? Not a pretty picture for patients who are pegs of all shapes when the holes are only either square or round…
That was one of the 2 most curious sentences in the report to me also. It is loaded with implications.
I’m disappointed non-joint aspects of the disease are not explicitly mentioned. What does a “global assessment” encompass? I had great joint inflammation success and lowered CRP on one of the biologics but it seemed to make my vasculitis substantially worse, enough so my for rheumatologist to remove me from it immediately without waiting to find out for sure if it was the cause.
excellent point, Michele & one thing that I thought I should mention when I do a more analytical post about this. Thanks for taking time to bring this up.
thank you for your input and answering my questions.
Most of all i would like to share with everyone that remission is possible, to the point of not even remembering I have RA.
Do we have datas on percentage of patients in remission?
I have not read the entire ACR press release, but I quickly came to the same conclusions as “westr” before reading his comment. To me that is the problem with today’s medicine, not individualized enough. My Mom was diagnosed with AD 5 yrs ago and it has been all downhill. I never felt as though her care was adequate and still don’t, just the same as I feel with my RA. I don’t understand all the DAS scores and such, one would need to do some serious studying. I understand that they do need criteria, but it shouldn’t be taken so seriously at the clinical level, otherwise patients may be put in the remission category when they are clearly not in remission. I look forward to hearing more and this and need to do some studying. Thanks Kelly!
April 24, 2011
FULL CATASTROPHY LIVING – Jon Kabat Zin
My RA came on after the death of my mother and several other life stress factors, divorce, only child going to college, all around the same time. My maternal grandfather was very deformed by RA, so there was a gentic factor also. So I knew immediately when the RA came on, to test and treat.
After ten years of methotrexate, prednisone, soma, norco, and the various biologic drugs as they came on the market, I went for psychotherapy where the counselor gave me a book that, when practiced, continually reduced my RA symptoms.
A year and a half of practicing with this book, and on and off with the psychotherapist, has left me RA pain free.
The hardest part was no longer taking the pain medication. But I had had a problem with alcohol too, so that would make sense.
I hope this small post allows someone else to discover the book: Full Catastrophy Living. I got my life back.
Good Journey,
laurenrae@goldrush.net
It is with great mourning, and I know I can use that term here without recourse:), that I find my RA is probably out of remission. It started with seeking treatment again for fibromyalgia, which I have finally gotten under control. So what happens when I rejoice that after becoming ill at the age of 14 with tendonitis, insane digestive system pain, and agonizing joint pain, I may finally get to be normal again? I suddenly find that I can’t walk more than a few feet without debilitating SI joint and hip pain. And now that I’ve “defeated” the fibroymalgia and myofascial pain syndrome through antidepressant therapy and my own home grown therapy program for myofacial pain, when my muscles are no longer in chronic spasm and can no longer be the explanation for my neck pain, the pain in the facet joints of my cervical spine cannot be ignored. It was a great 5 years or so. Time enough to have a child and manage to be somewhat functional and able to carry him when he was small and helpless. I’m rambling, i guess, because I’m up at 2 a.m. again with the RA pain. And so worried that disrupted sleep will undo all of the gains I’ve made with fibro
I’ve only recently discovered your website. Thanks for the extensive work you’ve done. May I suggest that it would be quite helpful to have the date at the top of each post/article as information changes so rapidly? It would allow me and others to save time by perhaps skipping very old information.
Thanks!
The date is above every post on the home page / index page & search pages. Once you are w/in a post, the date is at the bottom of each post.
I have the benefit, questionable, of having tested off the charts on all four test completed by my Rheum..C-Reactive Protein 84.5, Cyclic Citrullinate d peptide or CCP <300, Nuclear ab, positive with titre 80 and RF Rheumatoid Factor of 23…Clearly severe RA but my concern is the additional auto immune conditions that also accompany severe RA. I have Sjogren's but I am very concerned about MS or AS.The symptoms also comply with that criterion. My frustration is getting any of them to do MRI's. Or other testing ? Any suggestions ?
HOW DOES THIS WORK