Sunday, 27 April 2014

It's Just Damage??

Once you have a long history with inflammatory arthritis life can become even more frustrating than when it's a new diagnosis.  
It is not as easy to recognize active disease when much of the joint cartilage has been destroyed and you have many soft tissue changes in or near your joints. You may feel strongly that your body is still being attacked but the RA becomes more subtle in the ways it shows itself. 

I asked my own rheumatologist if the disease ever does burn out, as people used to say it did, and his short answer is "No."

My vision of 'burnt out' means the RA is dead and gone, leaving only the grim aftermath

My friend suggested this topic and it struck a chord with me. Her hands are like mine - one look is enough to tell people we have autoimmune arthritis. She has had it for over 25 years and copes well. What she wants now is a change to a more effective treatment; however her doctor tells her that she does not have enough active joints (5 is the magic number) to justify this. He's been treating her issues with cortisone injections, some general and some in various joints and since November she has had 10 of them. That's almost enough to put you into adrenal failure once the cortisone stops and you are "cold turkey."
As cold as a turkey can get

Since RA is a systemic autoimmune disease it may be active in other areas of your body that do not show up in a standard joint count. So many effects of RA are known as extra-articular, meaning they occur outside of the joint. I read one study done over a period of 46 years that concluded the incidence of these other manifestations of rheumatoid arthritis has not decreased.

My support group friends who have had the same kind of lengthy experience with RA are also seeing new problems showing up as they age.

For example look at Polly who now has lung fibrosis and liver damage. Her rheumatologist kept telling her that the honeycombing picture of her lung base is beautiful... a textbook example. She told him..."well, it’s not your lung with the honeycombing". 

In "Up-To-Date" which is the first choice of many doctors when they make decisions at the point of care you will find this advice: A person with end-stage rheumatoid arthritis has little or no evidence of ongoing inflammation but often has significant joint damage with deformity and loss of joint function. End-stage rheumatoid arthritis treatment includes therapies that reduce pain and slow or prevent additional changes in joint structure and function.

This advice sounds remarkably like it will help you achieve the status quo. While I'm worrying about that I guess you won't be surprised to see this paper* that says patients with later onset of RA (meaning over the age of 58) have more erosions, are more likely to receive steroid medications, and are treated with fewer DMARDS.
*Age at onset determines severity and choice of treatment in early rheumatoid arthritis: a prospective study.

We all hope not to need a wheelchair

I also looked at the musculoskeletal chapter of the Power Study. (Project for an Ontario Women's Health Evidence-Based Report) 

Among the many interesting facts stated, I found out that fewer than half of the women RA patients over 65 in Ontario were on first line treatment (women 49.5% / men 46%). How do we reconcile this with Treat to Target?

It's a struggle for everyone. There are too few rheumatologists, not enough awareness and a real lack of funds. Surely there are better ways of treatment that we can adopt for the future. I hope that constantly improving access to information and more active and aware patients will help make changes.

As it is now those of us with a rheumatologist  have "got lucky". But will we be able to get out of the holding pattern and back to real effective treatment when it's considered "just damage"?


  1. Annette, I found this really interesting as disease progress is something that we all must think about during the course of our RA. I sincerely hope that when I get to the damage only point that my team will be just as conscientious with my treatment, though I guess when it gets to the damage only stage you would add in an Orthopaedic surgeon as a member of your team, if you don't already have one, which I guess many of us do before we get to that point? I often wonder what will happen med wise since being told by my rheumy that they aim to lesson the meds as time goes on, a question I will be raising with him at a later apt.

  2. It's true I have a lot of damage but I'm saying that there is still activity going on in my body. I just don't believe that the only problem is the effects of old damage. It would be great if that happened but all the medications I'm taking are not completely smothering the RA.
    This is not something easy to find research on. Usually when you look for scientific papers on a subject they jump out at you, but not for this.
    I also worry about treatment becoming less aggressive due to age.

  3. You do a great job of disseminating information, Annette. I didn't know that about late-onset RA.

    There's another thing to be cognizant of, as well - the collateral damage of the meds. It's can be a damned if you do, damned if you don't situation.

    1. Thanks Marianna, I really enjoy looking at the new papers to see what's happening.
      Now that I am getting older and have had RA so long I am wondering about the long term effects of medication, especially the Nsaids. My whole digestive system is a lot less dependable than it used to be,

      That's the area where I would like to see more research, not just anecdotes.