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

Wednesday, August 31, 2016

When Your Medication Stops Working

10:30 AM Posted by Tiffany Taft , ,
It's 4:48 am as I sit down to write this.  I've been up since about 3 after waking up at 1 for the second night in a row.  This is familiar territory as insomnia is a big warning flag that the ol' Crohn's disease is getting up out of its corner to have another tantrum.  Been here, done this.

Except this time there's a big difference from flare ups of recent memory - I'm being a good patient and am taking my medication.  In the past I would stop my meds due to pregnancy or stubbornness or worry about side effects.  You've seen those Humira commercials right?  May cause cancer, heart disease, or serious or fatal infections.  You know, standard side effect stuff.

Since 2004 I've been on 3 different anti-TNF (tumor necrosis factor) drugs to treat Crohn's:  Infliximab (Remicade), Adalimbumab (Humira), and my latest Certolizumab Pegol (Cimzia).  Remicade and I had a short relationship as I developed an allergy after about 6 months.  This was back when Remicade was the only option for this type of medication to treat IBD compared to today where there are, I don't know, 8 of these medications?

Gastroenterologists LOVE these drugs because they've really worked well for the vast majority of people.  They love these drugs so much that they changed the entire way they approach IBD treatment to start with these once-upon-a-time "drugs of last resort" rather than trying other, less risky medications before going to an anti-TNF - or as they like to call it "Top-Down disease management." 

Go big or go home.

These medications are also very very expensive, which is why my cynical side believes pharmaceutical companies are developing more and more of them.  The 2 shots of Cimzia I received yesterday were $3500.  For one month's supply.  The anti-TNF medications that are given via IV infusion can cost more than $10,000 a dose.  This is where having good insurance becomes vital (are you paying attention anti-ACA people?)

Motivations of pharma aside, these drugs are important and they do really good things.  They've saved lives. But they do scare people because of their side effect potential.  They're rare, but if you get one it could be a major problem.  Like death.

So why am I sitting here in the dark feeling like I got hit by a van if I'm on a miracle drug? Simple:  these drugs can wear off.  Nobody really knows why except the body either gets used to them and finds a way back to what it thinks is normal - what I call the Dr. Ian Malcolm effect, or you develop antibodies like I did with Remicade.

Life finds a way.  Dinosaurs change sex to be able to make little dinosaurs.  Bodies reject foreign molecules. Intestines want to be inflamed.

In July I noticed some symptoms coming back in the last week prior to taking my monthly dose of Cimzia.  I decided to make note but not contact my gastroenterologist because it could have been a fluke.  The symptoms went away within a day or 2 of doing the shots.  Fast forward to this month and my body decided to up the ante and throw in a low grade fever in addition to massive joint pains, loss of appetite, and 5-10 bathroom trips a day.  What, no bleeding?

I bit the bullet yesterday and let my gastroenterologist know what was going on.  Mostly because one of the things you're not supposed to do while on Cimzia (or any of these medications) is take a dose if you have an infection.  The warnings are like the robot from Lost in Space.

Really showing my age with this one.

I have no signs of infection other than the fever.  But I'll get some blood work done later today to make sure that's not the case.  The more probable scenario is the Cimzia is wearing off.  And it's probably wearing off because I've stopped and started it 3 times in my life due to pregnancy, which was advised by my doctor.  What wasn't advised was to not take it for a few years after I had each kid.  That probably led to antibody development that's ruining my party today.

After I get cleared to take it this month, the plan is to spread out the shots to 1 every 2 weeks rather than 2 once a month.  That will probably work for a few months before it just stops altogether.  Then I have to figure out which one I try next.  Kind of like a buffet.  I'm thankful to have options.  When I became allergic to Remicade there was nothing other than a clinical trial for Humira that I thankfully got into and received the medication.

Psychologically, having your medication that keeps you well stop working is difficult.  I made a commitment to stick with my treatment last fall but it looks like my choices the last 5 years probably put me in this situation today.  I can't prove that, this could have happened anyway, but I certainly didn't help the process. I can't go back in time and tell me 2 years ago to suck it up and start the Cimzia again. It's hard to take a powerful medication when you feel well. Plus, it's nice to take a vacation from being a patient. But like everything, there are consequences I now have to deal with. Berating myself won't do anything, so I'm in one-day-at-a-time mode.

On the plus side, since I have little appetite, I don't have to worry about finding stuff to eat since I'm still on the EoE elimination diet until the 20th of September.

See, always a silver lining.


Tuesday, August 16, 2016

Sweet Home Chicago

2:24 PM Posted by Tiffany Taft , , , , ,
In case you missed it, I live in Chicago.  Well, I live in the suburbs of Chicago again, not far from where I grew up because parents = free child care.  The suburbs are OK, I suppose, but I'm more of an urban gal.  Which is why our practice is located in Oak Park.  Technically a suburb, but the first one just west of Chicago.  You can get downtown via the CTA, or "L", as we like to call it.  It's a whopping 10 miles to the lake (Michigan).

Voted one of the best skylines in the world.
Chicago has a lot of reputations.  I'd say our most recent is being the murder capital of the country because we have a bit of a problem with shootings in our poor neighborhoods.  A culmination of extreme segregation, oppression, and gentrification into neighborhoods that resulted in the razing of low income housing and disrupted well-established gang territories.  But that's a whole other set of conversations.

Today I want to talk about food.  Specifically, two things Chicago is world famous for:  pizza and Italian beef.  If you come to Chicago to visit, it's required to try deep dish pizza.  Have you had it before?  It's amazing, contrary to what Jon Stewart thinks.  There's debate among locals as to who has the best deep dish pizza but I side with Giordano's.  Others will say Uno, Gino's East, or Lou Malnatis.  None are bad, it's a matter of slight variations in how the pizza is made and what you like.

A thing of beauty.

Since being on this ridiculous elimination diet, I've had to sit and watch friends and family eat Giordano's pizza.  Twice.  The urge to say "to hell with it!" and take a bite was so powerful, I must now be able to relate to someone addicted to heroin who is a month into recovery.

Another food Chicago is famous for is Italian beef.  Al's is the best, but we like Portillo's as well.  Which you can find in other cities because the owner understood the importance of making this delicious food available to the masses.  For whatever reason, Portillo's beef has wheat and soy in it.  Because, of course it does.

So this past weekend I sat and watched my in-laws chow down on beef sandwiches while I ate the sweet peppers that could be put on said sandwiches.  They were as close as I was going to get to the flavor of the real thing and I guarded them like a rabid dog.

Me on Saturday.  Image credit:  Cujo

In all instances, my family and friends felt bad for me.  Which is not what I'm going for with this whole elimination diet experience.  They've even offered to try to find places to order from or go eat that will have something that I can enjoy.  I don't want them to do this at all.  Mostly because I'll likely only be able to order some lame salad with no dressing. Why should they have to work around my diet?  I tell them this, say it's not a big deal, and eat my carrots.  I think it makes them feel a little awkward or bad that they're able to do something I can't.  And I don't want that, either.  Which is why I do my best to downplay the whole situation. 

The joys of the social interactions while on a restricted diet.  Thankfully nobody has said anything stupid to me.  But I know that it happens, probably more often than it should.  I hear concerns from clients that people will think they're weird or ask too many questions about it if they go out and there's food they can't eat.  So they turn down offers to go to parties or out to dinner or whatever.  And that leads to isolation that makes depression show up or get worse.  Not a good plan, even though it has some sense to it.

To hell with that.  Yes, you feel deprived when you watch people eat [insert delicious food here] and you want to throw in the towel and enjoy yourself.  It's hard.  REAL hard.  And I can see how it'd be depressing if you think about it too long.  But what's more important, feeling sad about a delicious beef sandwich or enjoying time with friends and family?

No really, the beef is amazing.