Remicade Dream

This weekend, still on much-higher-than-usual doses of prednisone and flaring anyway, I gained three pounds in three days.

I learned something new about my buddy Pred this weekend. I knew that prednisone made my appetite rage out of control, that it seemed to make food taste more delicious than usual, and that it messed with my metabolism so that I would stop losing weight even during times of complete faithfulness to a weight-loss diet.  What I didn’t realize before, though, was that it could actually CHANGE MY THINKING.  I developed an amazing new ability to rationalize my eating choices, and the arguments seemed completely convincing at the time.  My resistance was extra-low to these suggestions because of the stress, the flaring, and busyness of the weekend.  So, at the risk of sounding like a crazy person, here’s my weekend, viewed from both my perspective and that of my pal Pred:

FRIDAY

Me:  My younger sister and her husband (let’s call them The Kids) came to visit us from across the country, arriving late on Thursday night.  On Friday morning I had to go in to have fasting labs drawn, so we decided that we’d all have breakfast out after my trip to the doctor.  I thought about places that were close to the doctor’s office, and came up with Denny’s.  I also knew that The Kids really like Denny’s, so it made sense, and off we went.

Pred:  Hey, you know what would be a great idea for breakfast?  Denny’s!  Remember last time The Kids were here, they were saying that they don’t have a Denny’s anywhere near them, and they really, really love it?  See, you’re just being a good hostess if you take them!  Since you didn’t make breakfast at your house, really, you owe them!  Don’t worry – there are healthy things you can eat there…  (After arriving at Denny’s:)  Wow, look at that!  You can build your own Grand Slam with any four things you like!  That way you can have a little of each thing – you don’t have to eat it all!  And it’s such a good deal, it just makes economic sense!  Hey, there are chocolate chip pancakes on the kids’ menu – I wonder if they’d throw some chocolate chips into YOUR pancakes?  (They did.  And yes, I ate the whole thing.)

Me:  We spent the day at the beach and had a great time.  Then we decided to have lunch at my favorite Mexican place, known for its decadent white cheese sauce.

Pred:  We all got lots of exercise at the beach, so you can afford this!  Besides, it’s a special occasion!  MMMMMMMMMMM…. white sauce!!!!!!!!

Me:  We went to a poker party at a friend’s house.  It was lots of fun!  We stayed up a bit too late and got very tired, but it’s so unusual for us to do this that it was worth it.

Pred:  Pizza and chips and cream soda – yay!  Oh, look – oatmeal chocolate chip cookies!  The hostess made them herself – she worked so hard!  She’s eight months pregnant, too, so eating them is really a way of showing support for her and her hard work.  MMMMMMMMMMMM…. cookies!  Hey, is that a flush?  That’s a great hand – you should celebrate!  Have another cookie, or three!

SATURDAY:

Me:  On Saturday morning, we were all exhausted and slept too late.  We were rushing to get to a friend’s Jewish naming ceremony (for both herself and her daughter), and stopped at Starbucks to get The Kids their coffee.  (I don’t drink coffee.)

Pred:  Well, you KNOW you have to take your pills, and you can’t take them on an empty stomach because it always makes you sick.  We’re here at Starbucks anyway, so you’d better get something here.  Hey, don’t they have chocolate croissants?  You love those!

Me:  The naming ceremony was very beautiful but long, and my toddler made me run around outside after him for most of it.  I was also flaring, and starting to go downhill by the time the lunch reception started – I was exhausted, everything hurt, and Pred had an easy mark.

Pred:  Bagels!  Cake!  More cake!  You worked really hard this morning running after your son – you need your nourishment!  Wow, that cake is good.  The pieces are small – another one won’t matter much!

Me:  After the ceremony we all went home.  My husband had been slammed with a work project and was sequestered in our office, and The Kids took a nap, so I ran around after the toddler some more, steadily going downhill.  At 6:00 my friend was hosting a dinner reception for the naming ceremony, and I had been looking forward to it – but by the time it rolled around, I was flaring badly, running a fever, and exhausted.  My toddler was throwing a major tantrum and my husband still had work to do, so The Kids went without us.  I burst into tears after they left, then spent the evening on the couch trying to comfort myself.

Pred:  You poor, poor thing.  RA is so awful, isn’t it?  I know how much you want to be out with your friends.  It’s just so unfair that you have to be here feeling terrible while everyone else is having fun.  It’s not like The Kids come to visit every day, either!  Gee, I hope the hostess isn’t upset with you for missing her party…  Hey, you know what always makes you feel better?  Baking.  Isn’t baking soothing?  You’ve loved doing it since you were a kid.  You don’t have to eat that much of what you make – The Kids are here to help with that!  What about that amazing brownie recipe your friend posted in her blog?  The really fudgy one that adds half a bag of Ghirardelli chips to the batter?  Wouldn’t that make you feel better?

SUNDAY

I’m not even going to talk about Sunday – let’s just say there were brownies for breakfast, a 3-year-old’s birthday party, a trip to the zoo involving zoo hot dogs, and a drive-thru taco shop.  White flag waving.

My weekend was very stressful, but totally worth it – I had a great time with great people.  Now I’m just making peace with the trade-off, which is increased pain, fatigue, and these three extra pounds.  Sometimes you just gotta live with it.  Even though the weekend is over and things are returning to normal, I can still hear Pred’s siren call.  There are no more brownies for breakfast, and I am gradually wrestling it under control, but I’m not completely back on the wagon yet.  Flaring worse than ever, which makes it harder, and struggling to deal emotionally with some bad lab results, too – see the excuses Pred will seize?  But even though I’m losing this fight, I think it’s worth documenting – first of all, because it’s the truth, and second, because becoming aware of Pred’s voice in my head helps me to separate it from the other parts of me that want different things.

Either that or I’m just losing my mind.  😛

Well, here we are again – prednisone and me.  I have been flaring for more than a week now, resisting going up on my pred.  But yesterday was a real low point – I was exhausted and cranky all day, and eventually my fingers got so swollen that an alarming-looking red bulbous thing popped up around my wedding and engagement rings.  It hurt so much that I was worried I’d have to get my rings cut off.  Also, my husband should be nominated for sainthood at this point – my brain fog was so thick that I had trouble making myself clear about anything, and kept getting angry at him for not understanding me.  I also cried when he teased me about the rings, which I don’t do when I’m feeling normal.  So I finally gave in and started a prednisone taper.

In looking for an image to express my relationship with prednisone, I thought that “battle” sounded too combative, while something like “waltz” sounded too genteel.  The idea of a tango somehow resonated with me, even more so when I read this theory of the history of the dance:

“The story of Tango as told is that it started with the gauchos of Argentina. They wore chaps that had hardened from the foam and sweat of the horses body. Hence to gauchos walked with knees flexed. They would go to the crowded night clubs and ask the local girls to dance. Since the gaucho hadn’t showered, the lady would dance in the crook of the man’s right arm, holding her head back. Her right hand was held low on his left hip, close to his pocket, looking for a payment for dancing with him. The man danced in a curving fashion because the floor was small with round tables, so he danced around and between them.”

Hmmm… stiff knees, dancing around obstacles, dancing with a stinky partner in the hopes of getting something good from him…  Yeah, that sounds about right.

Prednisone – the drug we love to hate and hate to love.  There are even support groups  for those dealing with the complexities of their relationship with it.  I haven’t joined any of them, but I understand them.

There are two sides to the prednisone story.    On the one hand, it truly is a miracle drug, and for some people, even a lifesaving one.  When I take it in high enough doses, my inflammation and all of its symptoms subside almost immediately, and I’m full of pep and energy.  This is amazing to me, especially when I’ve been unable to get out of bed the day before.  At times like this, I am supremely grateful that this drug exists.

The other side of the story is that the drug often comes with a host of side effects, which become more and more serious the longer the drug is taken.  Not everyone gets side effects from prednisone, and not everyone who does gets exactly the same ones, but mine are so common that I’ve heard them over and over again.  I’ve gotten the characteristic prednisone “moon face,” a fatty hump on the back of my neck, stretch marks, odd facial hair (helloooooo, Elvis sideburns!), bizarre mood effects (manic energy, sudden weepiness, etc.), a massive sweet tooth with matching huge appetite, and, of course, the famous weight gain.  When I first started taking prednisone, I gained forty pounds in less than two months.  I passed through several sizes of clothing in a blink and don’t even have anything in my wardrobe for the way down.  What was REALLY painful is that I had just had a baby and had succeeded in losing the baby weight!

After awhile, I started to wonder – did the prednisone itself cause the weight gain, or was it just because of the overeating?  So I did a little experiment. 

During a brief time when I was off prednisone completely, I found that the pounds started dropping off me with very little effort.  I thought they would probably go even faster if I dieted, so I planned out a well-structured 1200-calorie-a-day diet for myself.  I started losing weight at a good fast clip.  Then I started having problems and my doctor put me back on 5 mg, a relatively small amount.  The weight loss slowed down, but I was still able to lose about 1/2 pound a week.

Then I flared, and had to go up to 30 mg for a little while.  I was extremely disciplined and ignored the raging appetite, and continued with the exact same 1200-calorie diet.  And guess what?  The weight loss stopped completely.  I managed not to gain the weight back, which made me realize that I had a new tool in my arsenal, but it was very, very difficult.  It was also frustrating to work so hard for no loss at all.  Any tiny deviation caused a gain, so quickly it was unbelievable. 

So I’ve concluded that at least for me, the prednisone really does cause weight gain in a way beyond the increased appetite.  I’ve realized that I will have to exert great dietary self-control every time I do a taper, and get comfortable with breaking even during that time, or even accept a small gain.  And I look forward to the day when I can get off the drug completely and get down to a healthy weight again.  I’ve lost 20 of the 40 pounds already, and it’s really hard for me to start another taper and see my hard work stop bearing fruit for awhile.

For now, we will tango, and I will do my best to enjoy being able to glide around the floor with ease, instead of focusing on the stinkiness of my partner.