If you're living with a chronic illness, you're in the right place.

Wednesday, September 28, 2016

Side Effects May Include...

4:50 AM Posted by Tiffany Taft , , , ,
I'm old enough to recall the glory days when it was illegal for pharmaceutical companies to directly advertise to consumers on television.  The first drug commercial I remember is the one for Prozac, with the little animated circle-person looking all sad and being followed by a rain cloud.  Then he/she takes a pill and befriends a happy blue bird.

Zoloft (not Prozac) Guy, circa 2003
My Google search informs me that this was, in fact, not an ad for Prozac but for Zoloft.  So much for that, Pfizer.

Now it seems like you can't watch TV without coming across a drug commercial.  In parallel with people driving in convertibles, sitting in bathtubs in flower fields, or Mike Ditka throwing a football through a tire is a voice-over person listing the potential side effects and risks which always seem to go on for days.

People living with chronic illnesses also live with chronic side effects.  And they live with chronic risk for developing another, sometimes more serious, problem from their medications.  My personal favorite is when doctors start treating the side effects with more medication, which also has side effects.  I realize that this is sometimes necessary, but when you step back and look at it, it all seems a little insane.

My most recent, and 3rd, upper endoscopy showed no real improvement over the 2nd one I had in July.  Some things healed, some new things showed up in both my esophagus and stomach, and the eosinophil count remained the same (> 15 per high power field, which is the cutoff for EoE).

The great news is I got to put dairy, eggs, and fish back into my diet because taking those out did absolutely nothing.  Huzzah!

The bad news is I'm likely going to have to go back onto a high dose proton pump inhibitor (PPI) to treat this stuff. I'm likely experiencing EoE and Crohn's disease in my stomach, which is a rare place to have Crohn's show up so there isn't a lot of knowledge about it.  

I'm all about being this special snowflake.

You may have seen in the news new research about the risks of chronic PPI use.  When medical findings are picked up by the media, they're usually over-hyped as either "WE FOUND A CURE!" or "ANYONE ON [MEDICATION A] IS GOING TO DIE!"  Slow your roll, media.  It's never that straightforward - which is good and not so good.

PPIs were once assumed to be these incredibly safe, low-risk medications that could eradicate gastroesophageal reflux disease in the vast majority of people who took them.  To say they were considered miracle drugs might not be far fetched.  PPIs were so successful that their use expanded to even those without a definitive GERD diagnosis and eventually they were approved to be over-the-counter.  So literally anyone who experiences heartburn a few times can hop on over to the store and buy an unlimited supply of PPIs.

Side note:  One of my first mentors in GI, Dr. Michael Jones, wrote a nice piece on heartburn and how our lifestyles impact its presence in the Los Angeles Times in 2013.

The PPI party went south when someone pooped in the pool (my 7th grade literature teacher would be so proud of that alliteration) - I mean people started having significant side effects.

Doodie! Image credit: "Caddyshack"
Major risks/side effects of PPIs include:  osteoporosis, pneumonia, C-Diff infection, iron deficiency, and vitamin B12 deficiency.  More recently, long term PPI use was associated with kidney failure and dementia.

Cool.

The odds of any of these are small, so let's not all have a heart attack about these studies.  However, the consensus among gastroenterologists who know much of anything is that PPI use should be limited and only for people who actually need them.  The days of throwing a PPI at someone who mentions heartburn once are hopefully nearly over.

Turns out I'm one of those people who actually needs them.  The treatment for EoE like mine is 40 mg daily PPI.  The treatment for stomach Crohn's is also a PPI in addition to the anti-TNF medication I'm on, which may not be working so well.

Also turns out Crohn's disease causes bone loss, iron deficiency, and vitamin B12 deficiency and these are all things that I have been diagnosed with.  I've had osteopenia and low B12 since my diagnosis in 2002. My recent hospital stay identified the iron deficiency and I have my first 2 iron infusions starting in early October.  I hope side effects of those include Tony Stark-itis.

I already have a bit of his personality.  Image credit: "Ironman"
My next appointment with my gastroenterologist is in about a week and we'll go over the plan and discuss at length my taking a PPI, which she wants and I don't want.  The results of this endoscopy tell me I'd be foolish to not take the PPI but the side effects that include conditions I already have make me want to run away and hole up on an island like Tom Hanks.

Looking real appealing right now.  Image credit: "Cast Away"
Can I have any more movie references in this post?  Clearly I remember films better than I remember antidepressant commercials.

--T2