5.3.18

Physician, Treat Thyself

For the past 8 months I have been taking a number of medications designed to keep my CRION at bay.  These drugs (mostly Prednisone and CellCept) have serious side effects, like trembling hands and bloating and headaches and, well, read about them here and here.


When I tell my doctors about this, their response is usually an acknowledgement that they know, they know, but there's nothing they can do or recommend to help.  Gee, thanks.  While they may be helping with one thing - and yes, it's a serious thing - my quality of life is seriously diminished.


What if all drug makers and doctors had to take these drugs themselves?  Just to experience what we, the patient and consumer, experience?  So they can understand exactly how difficult it is to drive when you're shaking... or walk because your knees are too bloated to bend properly... or to feel incredible weakness when you stand up... or any of the other things we tell them about?


At my last school, in Connecticut, the security people were all armed.  There was a rumor that they also carried tasers.  I asked one if that rumor was true, and the response was that in Connecticut, to be licensed to carry a taser you had to agree to be tased first, to see what it felt like so you knew this wasn't a toy or to be used lightly. 


What if we applied that to some of these drugs?  It might not help mitigate the side effects, but at least the doctors would have a personal understanding of them.  And maybe pressure drug manufacturers into figuring out a way to counteract them while keeping the benefits.

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