A Dfferent Route To a New Treatment

My road to a biologic drug was different than most I think. Building on my experience as an active patient who often searched for information online, I found an educational resource for doctors online years ago. They are also called CMEs which stands for Continuing Medical Education and have changed in format now.

Though they are meant for doctors, anyone could participate and the format was great. After every few pages there was a quiz, so I could check that I was absorbing the information.

That was the way I learned about the results of the Premier Trial and others that were similar. 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. I had already seen what joint damage could do and knew I wanted as little as possible. 

After reading these conclusions it seemed to me that my life could be better with more aggressive treatment. With physical symptoms of fatigue and inability to expend energy my life was limited. After working all day I had no energy left for any other aspects of life and I spent my weekends resting and visiting sick relatives. I felt like a doll lying in a room in a dollhouse when there were no kids at home.

Well-being is not something that my doctor ever asked about in his surveys that included the Rapid 5 ( a quick way for doctors to judge disease activity) and HRQL (Health Related Quality of Life)  measurements. Fatigue was not part of them.

Now we see Patient Related Outcomes (the results patients think are important) becoming far more important in treatment decisions and clinical trials for chronic diseases like rheumatoid arthritis. This change is recent and similar to 'treat to target' which is another phrase you may have seen online, far more than in doctor's offices.

I was convinced, but next I had to convince my doctor to take another look at my health. In my experience if you show up looking presentable and a bit perky at the Dr's office they think you are doing fine. Getting that re-assessment is difficult if you seem to be coping adequately. As my first GP (who missed my diagnosis) used to day "If it's not broke, don't fix it."

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 the new DMARD had worked it would have been great but it didn't. 

Now I am on a biologic. With it I have more tolerance for exercise and I can do more in a normal day. It did give me a better sense of well-being so I am happier and I think I am healthier too.

For an interesting read have a look at this paper that discusses the qualitative or narrative responses that show the outlook of patients - that is the experiences, attitudes and expectations of people like us about the information they receive before they start anti-TNF therapy

I really liked the paper - it sounded like me

This post is part of RA Blog Week. For more on this topic click here

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.