A Surprising Decision

I have always been a bit of a contrarian.  Those who know me realize it's a pretty ingrained character trait (or some would say a flaw).  Conformity and acceptance just don't come naturally to me.

But with my medical treatment for Rheumatoid Arthritis, I was uncharacteristically subdued and compliant that first year.  Virtually everything I read or heard urged me to aggressively treat with the latest, most effective drugs.  In theory, this should protect me from joint damage in 8, 10 or 15 years.  Then, when I was completely disabled by medication side effects,  I read this blog post by one of my RA heroes:  http://www.rheumatoidarthritisguy.com/2011/05/to-medicate-or-not-to-medicate-that-is-the-question/

It was so refreshing to me to read that someone else felt their body rebelling against the medications, especially since I was spending about 3-4 days a week in bed with side effects from max dose Methotrexate, daily Prednisone and NSAIDs at the time.  Maybe that blog post planted the seed, or at least nudged the contrarian in me.

Before I thought it through to a decision, fate made the final choice.  After 10 years of self-medicating with NSAIDs before my diagnosis, NSAIDs of all types (even over-the counter doses) became an exercise in self-punishment; doubled over with stomach pain, unable to eat, I gave them up after dire warnings of permanent damage.  Sick to death of the Prednisone anxiety, insomnia and hypertension, my rheum and I mapped out a taper schedule to get me off the steroids.   Methotrexate alone was not cutting it; we discussed biologic medication options.  Just as I was finally thinking of adding Cimzia, my liver enzymes went off the charts on my bimonthly labs ... bye-bye Methotrexate.  In my panic at the thought of going backwards, I agreed to start Cimzia. Then a week later, my TB skin test (just a formality for biologics therapy, right?) was positive.  Now I had to undergo a 6 month period of antibiotic treatment to be eligible for biologics (I'm halfway through that now).

Two interesting things came out of this confluence of fateful events - I was forced to accept and learn to live with my increasing daily pain, and I found my inner contrarian again.

Losing the NSAIDs was not a huge deal while I was on daily Prednisone.  Tramadol works for me to reduce pain (it doesn't work well for some), so that helped.  Tapering off Prednisone was much tougher - after tons of aches, pains, increased stiffness and a doubling of my Tramadol dose, I made it.  I now use Prednisone in short tapered bursts to manage disease flares.

How do I live with my increased daily pain?   I have learned to understand my triggers and be respectful of those boundaries.  I don't try to push through a flare.  I don't overexert myself, even when I really want to.  I accepted the fact that I can't work, even part-time without spiraling into uncontrollable disease from the everyday stress and required consistency.  I accepted medication and therapy for my anxiety, stress and depression.  I have learned to ask for help, and to accept it when it's offered.

What part does my inner contrarian play?  She tells me to trust my gut.  She reminds me that, although the common wisdom is that toxic drugs delay joint destruction, science has yet to prove it.  She urges me to balance quality of life NOW, TODAY against future risks.

The bottom line?  I will finish my TB treatment.  And after that, I will resist biologic therapy as long as possible.  I will reassess my choices as needed.  But I will not spend 3-4 days a week in bed from medication side effects as a tradeoff for the uncertain promise of delayed joint destruction.  I will look at the big picture, and make my decisions accordingly.  And I will continue to blog about my experiences, hopeful that my story can help someone else feel less alone.

***Please don't read this as advice!  This is a chronicle of my personal journey and choices.  I consult my doctor when making these decisions and you should too.  My disease is moderate, and other factors such as my age at diagnosis, my overall health, my lifestyle may not apply to you and your uniquely personal situation.***

RA Treatment and Morton's Fork

Morton's Fork is a term used to describe a choice with equally unpleasant results. The term is named for John Morton, a tax collector in the reign of Henry VII who used the following logic to collect taxes:

If a person chose to live well, he must have plenty of money to pay taxes to the King. If a person chose to live very frugally (or had to), he must have plenty of savings to pay taxes to the King. So, people began to say they were skewered on the prongs of "Morton's Fork".

The term is rarely used nowadays except to describe a Bridge playing maneuver.

I am currently taking weekly self-injections of Methotrexate (MTX), a chemotherapy drug that's been around for decades, and is the go-to drug of choice in attacking active RA for most rheumatologists. MTX has earned a spot as first-line treatment, because in low doses it is relatively safe and relatively effective in slowing or stopping disease progress; stopping disease progress means damage to joints, tissues & organs is halted - that's the golden ring we're all reaching for, and what my doctor defines as true remission.

MTX can cause some well-documented common side-effects like hair loss, mouth sores, nausea, stomach cramps & higher risk of infections. It is also associated with some less common but much scarier problems like liver damage, lung damage, neuropathies and increased risk of lymphoma. The best news where these risks are concerned is that there is a long history of MTX use in the real world, so its easy for me & my doctor to watch for indications of any of the wicked side effects.

MTX is the first prong of my Morton's Fork - I have accepted the risks & unpleasant side effects in hopes of achieving remission.

Unfortunately not only have I not seen remission in 8 months of MTX therapy, but I haven't seen sufficient reduction of disease activity to hold off joint damage. So, Dr. A has advised me that she wants me to try a biologic drug in addition to the MTX in hopes of beating my crazed immune system into submission.

Biologics are (simply put because I am after all somewhat simple) not the chemical combinations that are so many of our medicines invented in earlier decades. They are created through recombinant dna processes and may replicate or mimic the actions of our own proteins, antibodies, and other elements of our body's complex functions. For instance, one of the classes of biologic drugs for RA is designed to "flip a switch" in some cells that inhibits the production of a protein shown to initiate immune response, thereby reducing the damaging inflammation of rheumatic diseases.

Biologic therapies are pretty new, pretty impressive, and pretty promising. But - and this is a great big but - they bring another set of potentially life-threatening side effects, and the added risk that there are long-term health risks that we just haven't seen yet because they are so new.

Biologics are the second prong of my Morton's Fork.

To complicate things even further, I don't get to trade one risky drug therapy for a second risky drug therapy - I ADD it. Biologics are proven more effective when used together with MTX, which suppresses unwanted immune response to the biologic actions.

So in summary here are my choices:

Stay with current treatment, current side effects, current unacceptable results;
Add a biologic drug that will increase side effects, I don't know exactly what it will do to my body in the long term, in hopes of better results;
Toss the whole treatment thing, treat for pain, and wait for the inevitable deformity & crippling.

Geez man, I just wish I could pay my taxes and call it a day.