Wednesday, January 27, 2010

More Prednisone Wah Wah Wah

I know......I've posted a couple times before about my whiney-butt experiences with prednisone. You can read them here and here.

But I'm posting about it again since Dr. S and I have come to the conclusion that this drug and I had better make nice and get along, because it appears that we will be pals indefinitely. I will be taking a low dose of prednisone orally every day.

I agree with Dr. S. - for me, the side effects of this medication seem to be far outweighed by the benefits. In spite of several burst and taper regimes, I just seem to have better control of my AI symptoms overall if I take long term small doses of prednisone.

Prednisone can indeed have some significant side effects, among them increased blood sugar, which can lead to diabetes, osteoporosis,  glaucoma, high blood pressure, insomnia, cataracts, and an increased risk of infection. You can read more about prednisone and it's side effects on the Mayo Clinic's website, found here. Dr. S. will monitor me at regular intervals to ensure that I continue to avoid these problems. So far, so good.

One of the less significant side effects is the one that I find the most troublesome. Well, the medical literature calls it less significant but I'd have to disagree. So here's the thing - when I am on prednisone I become a sugar/flour/chocolate fiend.

It's so hard to accurately put this sensation into words. I've always loved pastries and baked goods in general, but add prednisone to this proclivity and I turn into an absolute monster. Especially at night. Something happens to me at midnight when I am taking prednisone, and it's not pretty. The sight of my flannel-nightie-covered butt sticking out of the refrigerator while I'm rummaging around for anything sweet could be the stuff of nightmares for small children.

The medical literature euphemistically calls this a carbohydrate craving. I call it a stick your entire face into a boston cream pie craving. An I'm going to order and eat an entire Claim Jumper's Motherlode cake craving. 

From the Claim Jumper menu: Chocolate Motherlode Cake: A twenty-two year tradition. Six decadent layers of chocolate fudge cake topped with walnuts. Featured on the Food Network as one of America's "Top 5 Most Decadent Desserts" 
Oh. My. Excuse me while I go chug an entire squeeze bottle of Hershey's syrup.

I'm back. *delicately dabbing chocolate residue from face* All better.

So I've put on a few (ahem..) pounds since I began this daily prednisone regime. Prednisone pounds seem to fit differently on my body than just your run of the mill overindulgence pounds. Prednisone pounds like to hang around my torso and neck and face. Prednisone pounds just feel weird.

I've been looking around on the net to see if there's any good advice to be had in dealing with this.....addiction, or whatever the heck it is.....and haven't found any strategies that seemed useful or practical. This little tidbit was obviously written by an individual that has never experienced prednisone chocolate craziness:
There is no "magic" diet to prevent you from gaining weight with prednisone, or to make you lose the weight already gained. Like all weight-reduction diets, it is all about calories. You lose weight when you burn off more calories than you eat. To successfully lose weight while on prednisone, you need to reduce your caloric intake despite the appetite stimulation and try to increase your exercise to burn the calories. If you are just starting the prednisone, you want to make sure you do not increase your intake of food (and calories) right away, so you do not gain unwanted weight.
Oooooooookaaaaaaaaaay. I'll just eat less just because I know I should. I'll just handcuff myself to the couch leg when the cravings hit. Right. Great advice.

On second thought, that wouldn't work. I just know that I'd carve up my hardwood floors pretty badly when I drag the couch over to the kitchen. Sigh.

Here's another article written by someone equally clueless:
Modify your carb intake. Carbohydrates affect your weight on prednisone by increasing water retention and food cravings. Stick with a low-carb diet to maintain your weight and eat no more than 20 to 30 grams of carbs a day.
People - I know that I shouldn't be eating more calories and carbohydrates. I know it. I know this. I am completely conscious of this fact as I wolf down a dozen Krispy Kreme donuts.

The problem is in feeling completely helpless when these cravings hit. I feel as though I'm as powerless as someone standing in front of a tsunami wave.

What I need to know is how can I dampen these cravings? How can I make them more manageable? How can I avoid becoming so large that I have to buy three seats for myself on an airplane?

Here's a few strategies that I am trying, with very limited success:

  • Snack on fruit - I know, the goal is to reduce carbs but I figure that a piece of fresh organic fruit has many more redeeming qualities than a quart of Haagen Daz does. 
  • I am buying dark chocolate with a high cocoa content. Milk chocolate triggers a feeding frenzy in me that would rival any shark pack. But for some reason, a piece of very dark chocolate satisfies in much smaller amounts. 
  • I am trying to resist stocking my pantry or refrigerator with trigger foods. However....I live very close to multiple places that have enormous quantities of high quality prednisone craziness foods. 
  • Exercise. Sigh. This one is hard as anyone with AI fatigue knows. But I keep trying to increase my physical activity in small increments. Hopefully one of the benefits of long term prednisone will be a higher tolerance to exercise. 

Any other ideas out there?



Jenny P said...

I don't know about helping, if you could see my stretchmarks, waistline (wait, I can't find that either...), or receipts from dinners you'd already know I can't behave dietarily. But I can relate! I haven't done Prednisone but just on my own naturally I have CRAZY calcium cravings! I've actually gone on a rampage through the house CHUGGING milk and eating shredded cheese from the bag so voraciously my husband AND the dog stood back and gawked. I also have a slightly less intense version of this craving for protein. They come out of nowhere but when they hit I HAVE to have them! I remember one day thinking if I could combine eggs and peanut butter into a protein feast without it being too gross. Also, on a much lesser scale, I do have to have carbs. I can't do those just-fruit-for-breakfast-and-all-snacks things, I get sick. So, when I take that milder carb craving and extrapolate it out over my calcium / protein cravings I think I can imagine what you're going through!

Seriously though, what about snacks that just physically take a long time to finish? Hard candies? I accidentally bought sugar free Werthers and actually they're pretty good...

Denise @ Sunflowers, Chocolate and Little Boys said...

I hated being on that crap. Im sorry you have to stay on it. I have enough issues with carb cravings WITHOUT the added Pred beast rearing its ugly head. Im not much help...but here if you need me =D

annie said...

As a result of severe stomach/digestive problems and some food intolerances, I've had to completely eliminate flours,grains etc. in my diet. I have not eaten any sweets or breads/pastas in over 3 years. I've dealt well with this, but occasionally, the smell of cookies baking or someone toasting their breakfast makes me want to take a bite and risk the consequences. I'm also limited in the fruits I eat as things like apples,citrus make me gasp, make my throat(glands?) swell and I have trouble breathing. I also can't have what do I eat? I take a small piece of dark chocolate everyday. It really satisfies my chocolate craving without having stomach issues. I make sure I drink plenty of water after so I don't have heartburn. What a wonderful life!!!!

annie said...

P.S. to my earlier comment. I'm not sure about the sjogren's, but I know for a fact that in chronic fatigue syndrome ( and maybe fibromyalgia?)there is a predisposition to diabetes, mainly because of problems with the pancreas and the way our bodies process sugar. Are there any studies in sjogren's regarding this?

Julia Oleinik said...
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Julia Oleinik said...
This comment has been removed by the author.
Julia Oleinik said...

OOoo- what a great topic for the medical literature search - Sjogren's and diabetes link....hmm.....

Chelle Sandell said...

I am soooo glad I found your blog through Kelly @ RA Warrior! It was just what I needed. My Rheumy jacked up my pred. mg's when I had an allergic reaction to plaquenil. I went up to 40mg and he's slowly weaning me back down. I'm back to 10 mg a day now. I've been feeling like total crap. I think maybe I'll go have my blood pressure and sugar checked. And...thanks for the much needed laugh. It's nice to be able to see that I'm not alone.

marta said...

Julia I just stumbled on your blog and love it. I have Wegener's Granulomatosis, and have a blog of my own where I babble on insesantly. I have decided however to try and get all of us autoimmunies together and push the world towards finding the common thread to all Autoimmune disease. Alone we are a bunch of different rare diseases but together we are 20% of the population. I have a site I just started two weeks ago (so it's still a baby) but someone like you would be a great voice towards finding the common thread. Let's work together and change the world for the better. I have been going through your blog and our experiences are so similar (yours are just presented in a more eloquent manner). If you're interested the site is and if you wanna check out my babbly blog it's

All the very best to you and your battle and I would love to hear from you and join forces.