Tuesday, October 18, 2011

Sometimes the Clearest View is from the Valley

We all have them - peaks and valleys.  The natural ebb and flow of life's geological journey.  I have definitely been in a valley (Grand Canyon?) for the last 2 1/2 months.  (For new readers,  Methotrexate was damaging my liver, the standard TB skin test to begin biologics was positive, and while I wait for the state health department to process protocols for my doctors, I am between meds.) 

Interestingly enough, being completely off RA meds long enough for my body to recover its natural state has resulted in a bit of clarity I haven't experienced since before my diagnosis. 

I'm still taking daily pain medication, but it is the mildest of narcotics, so I don't suffer fuzziness or lethargy from that med, like I did with Methotrexate.  As each day passes, I can literally feel a slight difference as MTX exits my system - yes, every day brings a bit more pain, spasms, stiffness - but also a clear-headedness and focus I had lost has returned, and surprisingly I have more energy.  Having tapered off Prednisone in early summer, I am no longer anxious, ravenous, and grouchy like I was the entire 9 months of Pred therapy.  As the fog of side effects clears, I have come to realize what a hot mess I was on these combined drug therapies and while they helped with symptoms, they by no means led to remission.

At this point dear reader, you might expect me to suggest that others might also benefit from a medication vacation.  I hate to disappoint, but that's not the theme of this post at all.  We all know that trying to manage RA with pain meds and the occasional steroid burst will do nothing to stop the march of destruction - we need DMARDs and biologics to slow the damage.

What I have come to realize through this forced halt in therapy is this:  I have been a poor steward of my own body.  When I was finally diagnosed, after years of symptoms and the all-too-common disconnected treatment of individual episodes, I was only too eager to take the meds I was prescribed.  I am ashamed to say that I was so miserable by the time I got that first prescription, I never researched the side effects of long-term prednisone therapy - until I started feeling them.  I jumped at the chance to start Methotrexate in hopes of getting off Prednisone.  I never really practiced the caution I should have when taking a drug that is known to cause liver damage (I test positive for autoimmune liver disease, so it should have been a priority to recognize the signs before my 60-day labs told my rheum I was in trouble.)  It is our responsibility to be informed and aware about our drug therapies, even when we desperately need relief.

Things happen for a reason, and I guess I needed this mini-crisis to bring clarity for me.  Although I hope that every one of you can reach this state of clarity, I certainly don't recommend the path I'm on.  Trust me, you do not want liver issues, to be reliant on pain meds to accomplish activities of daily living (read wiping your tush), or to have the state health department interject itself into your treatment plan.  But I hope each of you can take away this moral from my story:  RA treatment is a science experiment ... literally.  Be informed before you put a new drug in your body; be conscious of your body's signals; don't just accept side effects if other therapies are available; don't assume that everything you feel is an RA symptom.

Because so few of us achieve remission, we struggle for balance in our treatment and balance in our lives.  And the only person who can define a proper balance is you.  I have accepted my disease, I understand my options, and I am now better prepared to define my personal balance.  I hope each of you can find that for yourselves.

How do you balance your treatment options and overall wellness?


Linda P. said...

I needed to read this today. I hate taking medication. Although I'm far from my old self, for the last couple of weeks, I'm finally seeing relief after more than a year of seeking first a diagnosis and then a treatment for RA. It's so easy to think, even after a short period of relief, maybe I don't really need medication at all. I hope you're soon through this trying period and that we all achieve that balance that's right for us.

The Rheuminator (Jackie) said...

I can definitely identify with that feeling of, "maybe I don't really need this med." I said exactly that when MTX was working for me but made me muzzy & tired. I'm so glad you're getting relief. I believe the first year is the hardest, especially for those of us who hesitated to take even OTC meds...hope you see continued improvement!

Susan said...

Hi Jackie,

I've been lurking around the RA blogs for some time. Its nice to find someone with RA onset in later life. I'm a flower child, too. Not finding many of us blogging, so it's nice to find you.

My path is similar, 10-15 years of mild symptoms, told they were peri-menopause, menopause, post-menopause, normal aging - all in my head, etc. etc.

When my wrist wouldn't heal, in spite of a year of various therapies, I finally, got "lucky" and when a new PT send me to a Rheumatologist . That led to the RA dx.

I also have Celiac Disease, diagnosed a few months before the RA. A wonderful and unexpected side affect of getting gluten free has been the positive affect on the RA. Not gone, flares with a vengeance if I get the slightest bit of accidental cross contamination from gluten, but gluten does seem to be one trigger for me. And one that I can control.

I haven't connected with the facebook group, don't really know much about facebook, short of being able to sign in. How do I find that community?

Anyway, I've enjoyed your blog and am happy to find another in my age group who is blogging.

Best of luck as you find a path that works for you!

The Rheuminator (Jackie) said...

Susan -
Welcome to my little world. :) Late onset RA is apparently less common and less predictable based on my experience and what I've read. Check out "Links you may like" on the left of my blog page for links to some internet support and info. Good luck in your journey.

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