One Patient's Positive Perspectives

Better living through chemistry?

There are some things about lupus that really take getting used to.  For me, it was hard to accept I would have to take medication every day for the rest of my life.  I had always been a purist when it came to putting foreign substances in my body, and chaffed at the idea of taking so many pills.  It would take a while for me to come around to the new way of thinking about medications.

Skipped even the caffeine...

Even during my pregnancies, I refused to drink caffeine, use artificial sweeteners or take any prescribed or over-the-counter medicines unless necessary.  I negotiated with my doctors to avoid them if possible.  I was pretty much against the idea of any kind of pill popping.  Perhaps my attitude was a reaction to growing up at odds with the San Francisco drug culture of the 1960s and 1970s.  That was not my comfort zone, to say the least!

Plaquenil

About two years after my lupus diagnosis, my patience with the medicines wore thin and I decided my body needed a rest.  I thought it might be good to stop the medicines, including my Plaquenil, thinking a break from prescriptions would be a healthy idea.  You see, I thought I was in control of my lupus, and could decide if I needed the medicines, or not.  I was horribly misguided and wrong!

Methotrexate

Acting out this type of thinking is really just called being a non-compliant patient!  There are sometimes very serious repercussions for ignoring the guidance of your doctor.  Problems did not start immediately, but after a couple of weeks without Plaquenil and anti-inflammatory medicines, my lupus flared horribly. Soon, my joints were stiffening and swelling from my lupus arthritis, and my walking was starting to feel and look like an old woman’s again. My pain levels increased with the stiffness and swollen ankles and hands, and pretty soon I was very miserable again.

Prednisone

I confided in my husband and best friend how much I hated taking all the drugs, and admitted to them what I had done. Needless to say, I got a couple of kind scoldings, and quickly returned to being a compliant patient again. My couple of months of non-compliance had taught me the hard way that skipping out on my medication was a really bad idea and could quickly make me very sick.

Follow the advice you pay for!

My husband’s advice (and deserved admonishment) was this:  “If we are going to pay the best rheumatologist in town all this money for his advice, why don’t you follow it, or stop paying for it if you aren’t going to do what he recommends.  There was some very sound logic in his thinking, and I have pretty much followed it ever since.

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Comments on: "Lupus and learning compliance the hard way" (4)

  1. Hi may I ask whay rheumy you use?

    • HOA: Thank you for your question. Since I do not give physician referrals on my public blog, would you please send me an email to lupusadventurer@cox.net with your city and state location? I would be glad to recommend my doctor through off-line communication via email. Thanks. LA

  2. I find we have to test the waters sometimes. I tried cutting my plaquenil in half a couple of times only to find I began to feel worse after just a week or two. Unfortunately, many people are sicker than they need to be because they do not follow the doctor’s advice or do not have a good doctor. We really need to be proactive on our own behalf, no one else will be.

  3. Wow, I am so glad to hear that I’m not the only one who hates taking meds of any kind! This has been one of the hardest things for me too, taking all the meds that I have to take. I too, think I don’t need the meds and why not take a break from them. Never a good idea, I have learned my lesson as well as I had most of the symptoms that you discribed. I have them sometimes with taking the meds. But not taking the meds is a bad idea all the way around.

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