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Tuesday, 27 September 2016

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




2 comments:

  1. Annette, well first of all the love the turtle picture. Though I doubt the turtle like its predicament. I have enough trouble with on head I cannot imagine two. (oh the arguments that would ensue)

    Your path to a biologic medication is different than mine, but one thing I have learned today as I read these responses is how varied our paths are. Depending on the country, the person, or the doctor we have at twisty road.

    It is so different with diabetes. With that condition we are given insulin. It get a little more twisty if you are older and present with what is Dx'd as type 2 but is really LADA. But all in all it is still a fairly straight path with one destination. RA is so different. I do not think most people understand how difficult it is to get to the right medication. RA requires the patient have significant skin in the game of making the medication decision.

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  2. Annette, I'm glad I discovered you via #RA Blog Week and The Spoonie Rheum, which we were both featured in this week. You point out something I have thought about just recently: according to RA remission standards, I am well. But I know better than that, in that myenergy level, especially with exercise, is much lower than what I know is normal for me. No one ever asks about fatigue, do they? I'm not ready for a change of meds, but your post certainly gives me hope that if I do change to a biologic one day, it might just be a real blessing!

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