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Wednesday, 22 May 2013

Enthusiasm For Biologics

I found a research paper called Patient experiences, attitudes and expectations towards receiving information about anti-TNF medication – “It could give me two heads and I’d still try it!”   The research that went into this paper centers on patient experiences, attitudes and expectations about the information they receive before they start anti-TNF therapy. As soon as I saw the comment I loved it.  It made me think of my pre-TNF self.


                                www.the-rheumatologist.org Fatigue in RA
                                                   ACR/AHRP Annual Meeting 2012     

This was my experience making the decision about biologic drugs:
Six years ago I was managing to work full time and that was about all I could do.  When I came home from work I was too tired to do much more than lie on the couch and stare into space.  

I did manage to keep looking for information online and I read the results of the Premier Trial and others that were similar with great interest.  Among the articles I read, the conclusions that stuck with me, were those that said anti-TNF drugs improved disease activity and physical function.  What appealed to me most was that biologic drugs were said to give an increased sense of well-being, better physical function, and to decrease erosions and joint damage.


                                   news.com.au     Sense of Well-being

After reading these conclusions it seemed to me that life could improve with more aggressive treatment. Next I had to convince my doctor that this was necessary. With physical symptoms of fatigue and inability to expend energy my life was limited.

It took a few appointments to do this, which in RA terms translates to more than a year.  I had to "fail" on another DMARD so that the insurance company would be satisfied. If it had worked it would have been great but it didn't.

I really wanted to be taking something that would give me a better quality of life than I had at the time.  Over the course of Rheumatoid Disease I had tried almost every DMARD and most made no difference to my RA.

The study mentioned above was qualitative and the conclusions that were reached came from analyzing data and comments from focus groups. The people who participated made comments that made sense to me.  The study about patient's perceptions that talked about a sense of well-being was also qualitative, so that information came from patients as well.

Well-being is not something that is asked about in the Rapid 5 and HRQL (Health Related Quality of Life)  measurements.

Here's a quote from a rheumatologist on this topic: 
"In recent years we have been discussing the need for a broader approach to treatment--such as in addition to measuring disease activity, measuring structural changes and functional impairment--which may help physicians and patients mitigate further irreversible effects of the disease." said Dr Edward Keystone, Professor of Medicine, University of Toronto, Canada.

2 comments:

  1. I think more onus should be put on the quality of life when the rheumies do these scores. Mine always asks me for a pain level score and how my energy is (what energy is my reply there). But they don't ever ask how have you felt about your life in general this month, what have you been able to do on a daily basis and what do you feel you've missed out on doing. I think these things would give our doctors a much wider appreciation of what we're dealing with.

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  2. I've got some of the same issues. Every time I see my rheumatologist I fill out a form for assessment. I've been doing this for years, and I realized that the measures of abilities and health related quality of life are not very subtle. I would have to deteriorate dramatically to make the score change, so while it seems that I am very stable, that is not necessarily true.
    One way to measure would be to ask "What can other people your age do that you are not able to do?"

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