Tuesday, January 10, 2012

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.***


abcsofra said...

I have traveled this road also. I had to give up all the heavy duty meds due to side effects or due to my cancer treatment. And for me I was still getting the joint deterioration anyway, even with the big guns of the biologics. I haven't looked back and not once. My biggest problem to date is finding an ra doc that agrees with me here in NC. My NJ doc was the one that recommended this course as she was there for the 8 years with me through my ra and understood it all. I HATE having to try and convince a doctor of why I don't want to take anymore of the infusion meds, etc. I am and have been on low dose pregnisone for years. I have been trying vitamins and such and with some luck. I have an aggressive form of ra but feel the same way you do about weighing my options. We gotta do what we gotta do.

Linda P. said...

I was diagnosed in April. I refused pred, and I didn't take anything for pain. (I've now progressed to taking an occasional NSAID when the pain overwhelms me, enough to allow me to keep moving.) I did elect, however, to take a DMARD. When MTX didn't help, I started on Enbrel, and when it helped but only for half the week between shots, the rheumatologist added Plaquenil. I'm not back to normal and I, like many others, deal with constant pain, but this has made a big difference in my quality of life while hopefully minimizing the drugs to which I'm exposed. It's a good tradeoff for me between taking dangerous medications and resuming some sort of life again. My cognitive function was being impacted by RA as much as my physical abilities, and I was not "me." I can deal with pain: I couldn't deal with that, and I'm back to being myself if not back all the way in my physical abilities. Each of us will have different answers. I wish you great good luck and health with yours, too!

Anonymous said...

I was diagnosed with RA at the good old age of 23 and am turning 62 this Monday Feb 13th. It has been a long rough journey to date. All my dreams and aspirations were taken from me and I am still bitter to this day, but have learned to accept it. That is all I can do, no more, no less. Anyone diagnosed with this disease will tell you straight out that they would give anything for their old life back, me included. All I can say is that it is one nasty and cruel disease, which slowly takes your dignity and self confidence away. Like you Im being up front, nothing barred or censored. This is how I feel and have felt since I was dignosed way back when. I will never truly accept my condition. It has been HELL!

Medical Billing Software said...

Self medication can never be good.try and consult Specialist.If you are not comfortable with the treatment of one then move to a next one...but do not neglect your health and then invite remorse and depression from life.