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Monday, May 2, 2011

Choosing treatments for RA - you are not alone!

     I clearly remember the first and most important item on my "treatment" list was STOP THE PAIN...the constant, unceasing, mind numbing pain!  All else was secondary and rightfully so. With the level of pain so high and unending it is nearly impossible to think clearly or set down a plan for long term management.  
     So how does THAT happen you ask.  Once again the doctor becomes the crucial cog in the wheel of disease management.  In fact, my doctor specifically said to me that we first needed to get the pain and inflammation under control so that I could sleep, function and think again.  He was so right.  
     That said, I was not happy to hear that rather high dose corticosteroids were the answer.  Knowing the nasty side effects I was not thrilled to say the least but my doctor assured me that I would not need to be on them at such a large dose long term but is was necessary to get the inflammation under control.  So, that was that and he was right which you will see me say here often.  Despite my early skepticism which I think is a healthy thing, I have come to understand that my doctor may well walk on water!  Anyway, I digress.  
     While the pesky prednisone was doing its job, my doctor and I discussed and deliberated on potential treatments.  At this point,with pain subsiding and a clearer head, I realized that I needed to sort out what I wanted to achieve with treatment and share that with my physician so we could work together to meet that goal.  
     So, as a very physically active (runner and tennis player, etc.) 41 year old prior to the onset of RA, the mother of three active boys ranging in age at the time from 8 to 16, a wife and also working full-time I needed to consider what was I hoping for?  Tough question to consider but part of it was very easy.  I told my doctor that I did not want to be in a wheel chair at 45 watching my sons go through life with a mother who could not participate in their lives in an active, mobile fashion.  
     I further understood that some of the medications came with risks that could in fact shorten my life span.  I knew that the life expectancy for RA patients was, on average, 10-15 years less already so for me it was a no-brainer.  
     At the time I started with RA, back in 1996, "aggressive" treatment of RA was still a relatively new concept.  Often, doctors waited till their were radiological joint changes and observable deterioration before offering the "big guns" of treatment.  However, around this time, studies were starting to show that "early aggressive treatment" could actually prevent and/or delay those changes for some time.  I, luckily had a forward thinking rheumatologist who suggested that we go after it right from the get go and so we did.  
     I started on DMARD's (Disease Modifying Anti Rheumatic Drugs) soon after because they are long acting and take awhile (4-6 weeks often) until you realize any significant change.  I also started on an NSAID (Non Steriodal Anti-Inflammatory Drug).  I stayed away from potent pain killers because I don't feel good on them but many people benefit from them as well.  I found that heavy duty capsacian creams, topical sprays, heat wraps, ice, braces, etc. all afforded me better outcomes anyway.  
     Now I realize that this list seems really long but believe me they are all part and parcel of the arsenal you need to avail yourself of.  I have NO regrets whatsoever about the medication choices I have made over the years.  Sometimes they were on target sometimes not so much but always done with considerable thought.   
     I really don't want to go into tons of detail about all the medication choices but I started with all oral meds. moved to injectables and now have infusions done at the ACU (outpatient Ambulatory Care Unit) of our local hospital.  
     One interesting thing to note is that for me and many folks with RA we seem to develop a tolerance for the medications (or I should say our overactive immune systems do) so I seem to have to "move on" to a new one about every 5 years.  Lots of folks do not but I do.  Fortunately for me their are enough new drugs "in the hopper" that so far I am still ahead of the game.  I hope it stays that way.  Finger crossed (when I can :))).  
     So the key is to 1) read and research treatment options 2) talk to your doctor and tell him what you need and want your life to be and 3) commit to your plan and include your family and friends in the decision process.  Then you will have no regrets about your choices and you will feel comfortable with what you decide.  That said, changing your mind is fine too!  I know many folks who started out very conservatively with their treatment choices and over time adjusted their decisions.  
     Whatever you decide just be sure that YOU are informed and comfortable with them so you can get on with your life!
Hug your family and friends and laugh a little or a lot!

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