at the Water's Edge

Living life and learning all I can along the way!

My Take on RA Treatments & Decisions

After reading RA Warrior’s blog today and finding a link to this article, I found myself in some interesting thoughts and conversations about drugs and treatment for RA/RAD.  Firstly, although a digression from my main point here, I do want to address some of the problems I had with the article as relates to the Rheumatoid Arthritis section:

1. The article lists the number of reported deaths linked to biologic drugs, but fails to make any mention of how that compares to the number of deaths from untreated or poorly controlled RA.  The number listed has zero value unless we know how it compares to some control group or even the number of people on the drugs, so we can have some measure of risk.  (Of course, people aren’t often labeled as killed by RA – the cause of death indicated is probably much more likely to be heart disease or some other complication that stemmed from RA.)

2. The article states that pain and stiffness are all that are required for an RA diagnosis.  I don’t know how they came up with that, because in my experience in talking with other patients, extreme pain and limited mobility (read: can’t brush your teeth or dress yourself) often won’t even get you a diagnosis.  A more likely scenario is lack of proper diagnosis due to over-reliance on imperfect biomarkers (uh-oh, I think I'm starting to sound like @westr).  And…just to point out, whatever big bad Pharma does, the diagnosing and prescribing is still up to doctors—and they do not prescribe these drugs loosely, nor do insurance companies cover the costs for just anybody.

3. The author assumes that because people often go undiagnosed and unaware that they have RA for a period of time that the disease is “subtle”.  Nobody said it was subtle.  Patients often suffer through years of agony due to un- or mis-diagnosis, perhaps in part because of the lack of knowledge about RA among the general public (and even health care providers) stemming from the perpetual dissemination of this kind of misinformation.

Okay, end of rant and on to my point.  

Are there risks in taking drugs, especially these new biologics?  Of course.  Are there risks in letting a disease go untreated?  Absolutely.  Are there risks in trying natural and holistic therapies?  You’d better believe it.

So, what do we do?  How do we decide if and how to treat our medical issues?  In my opinion, it requires a risk-benefit analysis, and a joint decision-making process between the patient and a specialized medical professional.  There is so much information available these days that it can sometimes be overwhelming, but I think it is our responsibility as patients to be informed so that we can make educated decisions about our health.  We know our bodies best, and our doctors have expertise in our health condition: together we can make smart decisions.

For RA patients, there are some serious risks to letting RA go untreated.  RA Warrior has a great post on this.  But what's the best way to fight this disease?  I have encountered a lot of differing opinions about biologics and other DMARDs (disease-modifying anti-rheumatic drugs).  I think the important thing is to be sure that you are looking at the facts (both about the drugs and your personal medical history/situation) and using logic rather than emotion to drive your decisions.  For example, methotrexate is a drug many people shy away from because it has a hefty list of scary sounding side effects, and it is also used (in much higher doses) to treat cancer--and a cancer drug is immediately a scary drug.  But, as Dr. Kavanagh points out in his vlog, in most instances the potential benefits far outweigh the potential risks.  (Personally, I'm avoiding it for now for a much different reason, but we'll get to that later.)

That being said, some people have had bad experiences with methotrexate and have had to discontinue use.  The same goes for biologics.  For me, both biologics and methotrexate have had a very positive effect on my RA and have produced zero side effects.  Here’s the crux of it: we’re all different.  RA does not act the same in every patient or even in the same patient over time.  We each respond differently to treatments and the most important thing we can do is work with our doctors to find the solution that works best for us individually.  The challenge for us is also to respect the decisions of others, and to not be critical of someone who decides to do things differently than we would—because, guess what: they’re not us; we’re not them; and--most importantly--we may not know their full story.  To that point, I think that sharing both personal experiences and factual information are great ways for us to become a more educated and unified patient community.

My situation currently calls for some extra variables in my risk/benefit analysis.  If you’ve been reading my blog, you know that I recently switched from Enbrel to Humira – and I’m not sure how well Humira is working.  The possibility of having to switch drugs yet again spurred me to do some research into what my options are, keeping in mind my extra variables – which are the fact that I am in my childbearing years and would like to have children in the semi-near future.  That means no methotrexate for the time being (being a folate inhibitor, it is known to cause birth defects).  So, I started putting together this chart of biologics for RA and their corresponding pregnancy categories so I can be informed before making any potential decisions (we'll save the real pregnancy & RA discussion for another day, though):

RA Treatments
Brand Name Generic Name Administration Timing Target Pregnancy Category
Rituxan Rituximab Infusion 2, 2 weeks apart - lasts 6 months B cells / CD20 C
Kineret Anakinra Injection Daily Interleukin-1 B
Actemra Tocilizumab Infusion Monthly Interleukin-6 C
Orencia Atabacept Injection/ Infusion Weekly / Every 4 weeks T cells C
Enbrel Etanercept Injection Weekly TNF-a B
Humira Adalimumab Injection Bi-Weekly/Weekly TNF-a B
Simponi Golimumab Injection Monthly TNF-a B
Remicade Infliximab Infusion 3 starter doses, then every 8 weeks TNF-a B
Cimzia Certolizumab Injection Every 2-4 Weeks TNF-a B

**Post-blog update -- I have my completed list available here.

I started a list of other DMARDs, too, but have not finished yet.  Today, I also found a link from my rheumatology office’s website to a listing of RA drugs and treatment facts, which looks to be a great resource.  

There certainly are a lot of options.  A lot more than a few decades ago.  But, we still have a problem: our options aren’t good enough.  There is still a large portion of the RA patient population that doesn't respond to current treatments.  Also, the “success” of current treatments is measured by standards that most patients would not consider success.  And, perhaps most importantly, as my dear friend Kelly points out, it seems that most of the research being done on RA treatments is done on a very narrow patient population, not at all representative of the RA patient population at large.  We need more research focused on those who do NOT respond sufficiently to current treatments, and focused on those who do not meet the “textbook criteria” for RA.

A lot of progress has been made, but we’re not done yet.  By educating ourselves and educating others, we can make the best choices for ourselves right now – and hopefully bring about more research for new and better treatments in the future.

**Please note that I am NOT a health care professional, and nothing on this blog should be taken as medical advice.  The information provided here is based on my personal experiences and is meant only to be food for thought.

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Hi there! My name is Dana and I live in West Michigan with my husband, Tom and our dog Copernicus. I created this space as a place to share the things I learn along this journey I call life. I work in marketing and I'm a sort of Jane of All Trades, interested in all things nature, gardening, cooking, exploring and learning new things. This blog is a conglomeration of my interests, hobbies, life and life lessons. Thanks for stopping by!