Thursday, 30 May 2013

Calculated Risk

Picture of bottle of Plaquenil.Yesterday, I went to the opthalmologist.  I go every year, because I take plaquenil.  That's an antimalarial drug, actually, but it's frequently prescribed for lupus.  Taken long-term it has risks, like blindness.

It's rare, but plaquenil can cause severe damage to eyes, so anyone taking it ought to have their eyes regularly checked by an expert.

A couple of years ago, I had a bit of a scare, when one of my tests looked a bit odd, but it was fine the next time around (much to my relief.)

So why take something that could leave me blind?  Because lupus, untreated, can do much worse things.

I also take a chemotherapy drug called methotrexate.  The patient information leaflet for this little delight includes such warnings as "wash your hands after taking this medication".  Meaning, you don't want to get residue of this stuff on anything, it's that dangerous.  And I'm swallowing it, once a week, every week, for years. (If I were taking it for cancer, I'd only be taking it for a couple of weeks at a time, and after a few months I'd be finished with it for ever.)

Then there's the ever-popular prednisone. That can reduce bone density, cause cataracts, cause either anorexia or weight gain, increased blood pressure, fluid retention, etc, etc.

How about sulfasalazine, which has the potential to damage pancreas, kidneys, lungs and it seems almost anything else?

I take lots of other toxic drugs as well, all in a carefully-balanced cocktail.

Why swallow these poisons?  Why take the risk?

If lupus is left untreated, it can cause more than the aches and pains and fatigue and brain fog I struggle with every day.  Untreated, it's a time bomb.  It can attack any organ at random, and it can be fatal.

So, for now at least, I dutifully swallow my pills. And I hope and pray for better and safer treatments, and eventually a cure.

If you're not sure about the side-effects of your medications, or any information you need about taking them, check the patient information leaflet that should have come with the first package of it you had.  If you've lost that, go to the NPS Medicine Finder, type in the name of your medication and follow the link to find the patient information leaflet.


  1. I take plaquenil and so far, my eyes are fine, except for being extremely dry, so I need special eye drops. But I have tinnitus so it's hard for me to understand things I hear.
    Been taking it for years, but I figure as long as I do, I have the years to take it in.

  2. Sometimes it's hard to explain this to people. They say, "If the side effects are so bad, and you still feel lousy, then why take it?" They don't understand how much worse things could be. Good luck with yours!


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