A stitch in time saves nine…How early is early in Rheumatoid Arthritis?

Rheumatoid arthritis is a chronic autoimmune arthritis with destructive potential. It not only destroys joints but can also play havoc with one’s personal life, family life & career. As Rheumatologists, we have learnt over the last decade that the only way to conquer this deadly disease is to treat early & aggressively with DMARDs.

However, how early is early enough?

We are very much interested in knowing how early we should be treating RA with DMARDs for the best results. This period is the ‘window of opportunity’. Once missed, the prognosis would change drastically. Initially, this was thought to be 2 years from the onset of symptoms. Later, it was thought that diagnosis & treatment with DMARDs within 6 months from the onset of symptoms should be good enough to take care of the disease.

Michel PM van der Linden studied this ‘window of opportunity’ at the Leiden Early Arthritis Clinic. His group studied 1674 patients with RA over a period of 6 years for the level of improvement with DMARDs & joint destruction. They found that contrary to popular belief, 6 months is too long a period to be considered as the window of opportunity. 12 weeks was found to be the critical period. A delay of more than 12 weeks would mean a lesser chance of achieving a drug free remission & 1.3 times higher risk of joint destruction in the long run. What was very striking was the fact that the effect of the delay could not be nullified by a more potent medication strategy later. Treatment started in this phase had the best chance of inducing remission & reset the disease. The effect was seen for anti CCP positive as well as negative patients.

What this means is that any delay of more than 3 months form the onset of symptoms to the start of DMARDs would mean poor outcome in the long run. Where can this delay occur?
1) Patients taking time to seek help.
2) Time taken at the Family physicians level in diagnosing & referring patients to a Rheumatologists.
3) Time taken at the Rheumatologist level in getting an appointment.

The average delay in UK, Canada & the Netherlands was found to be 23 weeks, 17 weeks & 18.4 weeks respectively. A survey in the UK found that delay at the patient level was the main cause of delay. Hence, an earnest request from my side to anybody suffering from joint pain – please seek a Rheumatologist’s help at the earliest. You can take this quiz to know if you have early arthritis. Please do not underestimate any joint pain or swelling as a part of ageing or as rheumatism that would settle on its own. Seek an expert help & that could mean a whole new life for you in the long run!

References:
1)van der Linden, M. P. M., le Cessie, S., Raza, K., van der Woude, D., Knevel, R., Huizinga, T. W. J. and van der Helm-van Mil, A. H. M. (2010), Long-term impact of delay in assessment of patients with early arthritis. Arthritis & Rheumatism, 62: 3537–3546. doi: 10.1002/art.27692
2)Bykerk, V. and Emery, P. (2010), Delay in receiving rheumatology care leads to long-term harm. Arthritis & Rheumatism, 62: 3519–3521. doi: 10.1002/art.27691
3)Kumar K et al Delay in presentation to Primary care physician is the main reason why patients with Rheumatoid arthritis are seen late by Rheumatologists. Rheumatology (oxford) 2007;46:1438-40
4)Feldman DE et al Rapidity of rheumatology consultation for people in an early inflammatory arthritis cohort. Ann Rheum Dis 2009;68:1790-1.

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18 Responses to A stitch in time saves nine…How early is early in Rheumatoid Arthritis?

  1. मी आपल्या लेखांची लिंक फेस बुक वर दिलेली आहे. (आपली परवानगी न घेता) या लिंक्स फेस बुक (तोरण, एफ. बी. मेळावा ह्या ग्रुप चे सदस्य) वाचल्या जात आहेत. व विचारणा देखील होत आहेत.)

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  2. Rachel says:

    n wat about the average delay in india????

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  3. Lara says:

    Wow. I’ve been fighting for a diagnosis for 2 years, and going to a Rheumatologist for a year. He JUST suggested a biologic, and now I’ve been waiting 2 months for my insurance to approve it.

    In the US, I’m going to guess insurance approval is a huge issue. My sister, who has Psoriatic Arthritis as well, waited nearly 4 months to get insurance approval. So here, the insurance companies are basically keeping us from getting into that window. I wonder if these statistics will change that.

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    • Thanks for highlighting this issue.

      Rheumatologists & RAers together should take up this issue & pressurize the Insurance companies into considering this as an urgent issue. RA advocates can play an important role in this.

      In India, thankfully, Insurance approval for IV biologics is not a major issue. A biologic that would be given IV & require monitoring requires 2-3 days for approval. The biggest problem we face here is the low insurance cover in the population & the fact that most biologics are paid out of pocket.

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  4. I wasn’t aware that RA could go into a DMARD free remission, is this really true?

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  5. I_don't_miss_high_heels says:

    I was diagnosed at 18 and due to my old fashioned rheumatologist who didn’t believe in early aggressive treatments I was stuck with sulpasalazine, plaquenil and steroid injections for a long time. Methotrexate tablets were added slowly which made me feel horrible so then onto injections which did nothing. Eventually, 5 years on, my rheumatologist died (i’m sorry to his family) and a new, very young rheumatologist took over my care and i was immediately placed on Enbrel which changed my life within a few weeks. I’m still on it now 6 years later and have begun mtx once again.

    I am lucky to have not suffered more joint deformity than I did though my knees will never be the same and my knuckles have enlarged so much that my fingers have changed shape!

    I really wish the Enbrel had come so much sooner for me though 😦

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    • True, this is exactly what experience & studies have taught us. Early aggressive treatment with DMARDs/ biologics (in those who require it) & aiming at remission from day one is the best approach to conquer RA.

      You have conveyed the point very well with your story.

      Wishing you all the best & may you conquer your RA.

      Like

  6. LynneElmira says:

    My mom was diagnosed at age 70.Yes this is correct..no symptoms til that winter when she was 70. Her RA dr…only one in our small town…put her on Plaquenel and Tylenol. ( Mom did NOT want to take Methotrexate which the Dr did suggest. ..she was too afraid of side effects and I could not convince her ) . Her joint damage occurred within months. …toes crooked…fingers..knuckles.. and she was always in constant pain and stiffess. ( Knees stiff in particular ) She could have taken more Tylenol..but again…she didn’t like to take medicine…she would take the MINIMUM amt of Tylenol. Pretty soon she could barely lift her
    legs up to walk…she shuffled her feet along ..began using a walker…She could not hold a cup of coffee….or raise her arms to comb her hair..or hold onto a toothbrush without it falling on the floor…so many things she could not do. She lived alone and I worked so I saw her every weekend. I watched this disease ravage my poor mothers tiny petite body. She began to lose her
    appetite . But the main problem was mobility. She could barely
    get around with the walker. Her pain and stiffness was a daily
    thing…and she tried not to complain..but some days tears just
    ran down her face when I asked how she was…she wouldnt answer..
    the tears answered for her. She went out to live with my brother in
    Arizona ..thinking the warmer climate might help her. But it didn’t.
    She had hip replacement out there…and then came back to NYS.
    Still needing the walker to shuffle along. She slept a lot..which was good. Eventually she had to go to skilled nursing care at age 78..after a series of mini strokes left her memory very affected…and
    her weight dropped to 85 pounds as she was not eating. At the facility she fell while in the bathroom one night and broke her leg.
    She had to have surgery to put a metal rod in the leg………..just
    to relieve her horrid pain…it did not help her mobility. She had
    a bad time in this surgery and was in hospital for 2 weeks…as
    we watched her mental functioning really really fade here..after
    this leg injury/surgery. She went back to skilled care and got
    dehydrated and was also now wheelchair bound. At this point
    she didnt even recall the she had RA. Dementia was taking over..
    as well as repeated urinary tract infections and several bouts with
    pnuemonia. She died at age 80.

    Like

    • Dear Lynne,

      This is what the real Rheumatoid Arthritis is all about. It can knock literally knock one out of life. Not just the one who has RA, but the entire family.

      Not many can understand the real agony of the patient & the family.

      I still feel that early methotrexate would have made a major difference to her.

      Like

      • LynneElmira says:

        Thanks for replying. I tried to convince her to take the Methotrexate..but her age 70..she didnt grow up taking meds for too much at all…was afraid of them..common with a lot of older adults. She was just very stubborn .
        I recently overheard someone say ..”Oh what’s with all these new drugs being advertized for R A ? –It’s just arthritis .”
        People just dont know .

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  7. tracy says:

    Devastating for me to hear. I saw four different rheumatologists in the U.S. before the 5th one made the correct diagnosis. It took 3 years (I got my dx last November). I have now failed mtx plus Enbrel, and seem to be failing mtx plus Humira as well. I even asked rheumatologist #3 if waiting for treatment would be a problem and he said no! I don’t understand how some rheumatologists can be so uninformed on such an important fact. Dr. A, hopefully your posting will help educate those physicians who still seem to think waiting to start DMARDs is ok.

    Like

    • Dear Tracy,

      Really sorry to hear about that. Time is equivalent to function in rheumatoid arthritis. Any delay in diagnosis & treatment can definitely mean change in the prognosis.

      Hope things take a better turn & your RA is controlled soon.

      Like

  8. I do trust all the ideas you have introduced for your post.

    They’re very convincing and can definitely work.
    Still, the posts are too quick for starters. May just
    you please extend them a bit from next time? Thank you for the post.

    Like

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