Sunday, April 15, 2018

Side effects...

Oh, my!  Is the pilocarpine throwing me for a loop!  This is the medication to try and increase saliva to help with the Sicca Syndrome in my mouth and throat that is a result of Sjögren's Syndrome.  Sicca is the dryness.

Sicca in my eyes.
Sicca in my mouth.
Sicca in my throat.
Sicca in my sinuses.
Sicca in my skin.
Sicca in my lips.

Fun times.

Because of several adverse side effects, you start the medication at a tiny fraction of the end dose.  The first two weeks were not that difficult for me.  However, Week Three has not been going well.  I am insanely dizzy, where I often find myself listing or the world listing or both.  I am also insanely tired.  I fall asleep at the drop of the hat and have to actively work at staying awake.  I even started falling asleep on the treadmill!  Like I said ... insane.

The third side effect, abdominal pain, has been more mild. However, when you are struck with a bout of pain that caused you to curve inward to stand against it, the pain is still disturbing.  It disturbs my body.  And it disturbs my mind.

It is no secret that I am deeply torn about this drug.  The monthly cost of it is not really sustainable for me.  However, this is for the Sicca in my mouth.  I've already had three cavities.  Me!  And I just read another post in the support group from someone who's now lost all her teeth. This woman lost all hers in a year!  Such sobering tales of dental suffering I read.

So, whilst I want to all ready quit the medication for how difficult it is being on it and the cost of it, I want my teeth to stay in my head!

The thing about dysautonomia, medication becomes this rather strange world in your life.  So often, you are taking medication for its side effects.  Then, because you are often on lots of medications, you have to worry about how the medications side effects will work together.  Then, like now and with the duloxetine, you have medications that you want to take for what they do, but their side effects prevent you from doing so.  SIGH.

The battle the past few days has me questioning my own sanity.   Why would you want to put yourself through this, Myrtle?  But riding the side effects roller coaster is part and parcel to living with chronic, incurable illnesses.

Still, I've been mighty ill since Thursday.

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