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Tape My Mouth Shut, Please

Tape My Mouth Shut, Please

Chips, crackers, bagels, cookies, nachos, pizza, leftover spaghetti, an entire package of mozzarella cheese (embarrassing)…Help, I can’t stop SNACKING. And I was doing so good lately! Over the last couple of months I had managed to cut down on calories and snacking quite a bit, and in the process started to finally lose some significant weight. But now I can’t seem to stop the cravings for carbs and cheese and, well, all food. Why such a change? Why do I feel compelled to stuff my face now? I suspect there is one evil culprit to blame: PREDNISONE.

A flare-up I’ve been having in my ankles and right foot has been going on for three weeks, and during those three weeks I’ve been taking prednisone again, reluctantly. The last time I was on it was about three months ago. Being back on steroids is frustrating and depressing because of their side effects (increased appetite, weight gain, weight redistribution, fluid retention, anxiety, mood swings, insomnia, increased risk of infection, osteoporosis, etc.) and just because one of my major goals in life is to stay off of them for a long period of time (forever, ideally). I’ve also been trying desperately to lose weight lately and to get my body back to being healthier and functioning more normally. That’s pretty much impossible when you’re taking prednisone every couple of months. But what’s the alternative? Suffer through intense pain and risk permanent damage and disability? I don’t think so. Give me the steroids, please. Now!

So how do I stop from undoing all of the hard work I spent losing those stubborn pounds not so long ago? How do I control my “hunger” and cravings while taking steroids during this latest flare-up? I’ve been trying to drink a lot of water and green tea, and to keep myself busy and distracted. This strategy has been working, sort of, but not well enough. The thing is, I can go for several hours during the day feeling like my appetite is under control and I’m fine, but then all of a sudden my stomach becomes an insatiable, bottomless pit that can’t be satisfied and I need to clean out the cupboard and fridge as quickly as possible. Failure.

Why do steroids increase appetite and cravings? Why do they make you feel like you can never be totally full and satisfied? And why do they have to make you gain weight in weird places, like on the back of your neck, in your face, or around your belly, making you look like a fat-faced pregnant hunchback? It’s not fair that they have so many nasty side effects when they’re really effective forms of treatment.

In many ways, these corticosteroids (such as prednisone) seem like little miracle drugs. For me, they’re often the best method of reducing inflammation and making my flare-ups go away. They work and they work fast. When you’re in unbearable pain, and you can’t walk, or you can’t bend your fingers, or you start sobbing because your whole body feels like it’s on fire or is about to get smashed into a million pieces–you need results and relief. Prednisone usually provides both of these things.

Since starting this latest round of prednisone, my pain and symptoms have improved a bit, but the flare-up isn’t totally gone.  Despite lingering inflammation and pain, I want to begin to taper off the drug as soon as possible. And once I start tapering down on the dose, I hope that my raging appetite and cravings will begin to subside and I can get back to where I was before the flare-up happened–which was enjoying a decreased appetite and losing weight! But until then, what can I do? Tape my mouth shut? I wonder how long it would take me to rip off that tape for a lousy bag of potato chips. Not long. Sigh. So please, any good advice or tips you have to help stave off the prednisone munchies is welcome! Help keep me from turning into a fat-faced pregnant hunchback again, while I try to get rid of this annoying RA flare-up.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Torrie Arnold
    4 years ago

    Hi Angela, talk to your doctor about getting steroid shots. I have found that I get the benefits without the nasty side effects. I will admit that the daily oral form is better, but the shot works well enough and I don’t want to eat everything in sight!

  • Janet Lemay
    5 years ago

    Hi Ladies! Just had this post pop up in email & for a reason ….. I just started the evil little white pill a few days ago. Yes- I have taken a dose pack before & felt like new but no daily regimen. Angela — you cracked me up so thank you! It is no funny thing battling the bulge but the way you describe your munchies made me smile & cackle out loud! My dream vacation is to be locked in a chip store overnight…. One of those gourmet stores you know. Lol…. Good post with helpful answers

  • Connie Rifenburg
    5 years ago

    I hear so many people who are on small amounts of prednisone like 2.5 and are on it for short periods during a flare speak of the side effects. I have been on prednisone full time for over 10 yrs at many different doses, as much as 100mg day, but never lower than 6mg day which I have worked to get down to this time.

    My Dr. says that after being on prednisone for so long, your body stops making the natural corticosteriods. And since you must produce some to live, I will forever be on some amount of man-made steriod(her goal is 5mg).

    For several years, I couldn’t get lower than 10mg without causing a flare. I sometimes have to go down 1/2 mg at a time over a month’s time.So, with that background; I went from a normal 135 lb woman to a 232 lb woman and have the exact same cravings that Angela is describing.

    In fact, I’m sending her explanation to my son to try and explain why it isn’t just “self control” or “diet”. Most people understand a craving as something that happens now and then. What about when you LIVE with this craving?

    The description Angela painted of the fat-face(I prefer “moonface”):-),pregnant, hunchback describes what I have seen in the mirror for the past 10 yrs.

    For the first few years, I tried walking, swimming, some exercise, but all I did was “bulk up”. Steroids don’t work well with traditional exercise. I have an 18″ neck! The only normal body part on me are my calves and ankles and wrists. And that’s because I have wasting muscles due to the steroids, so those parts have actually shrunken. 🙁

    I like the idea of the whiteboard. I do use the healthy snacks a lot which the doctor tells me is why I don’t keep going UP in my weight. It has plateaued at 232 for over 5 years. But that is 100 lbs over what I was during my adult life until age 50. From 50-62 I have gained all this weight.

    People who have met me in the last 10 yrs simply think I have always been fat. It’s hard to explain that you are 100lb overweight due to your medicine. Well, in fact, it’s not solely due to my medicine is it? It’s due to what I eat and the way it is distributed on my body. I went from a 36 B-C bra size, to a 44 DD. And elastic pants are my only friend because the weight gain is all in my upper body/stomach.

    So, if anyone else has been on a maintenance dose of prednisone as long as I have been..and each flare makes you have to go HIGHER to control the flare, where when I was on 10mg, I needed 60mg to stop a flare, if it became pneumonia, it became 100mg IV Dexi. to overcome it, please write here and let me know I’m not alone.

    I work so hard at staying at the lowest dosage of Prednisone, but replacing it with a pain narcotic isn’t the answer either. I feel caught between a rock and a hard place. I’m on Orenscia now, as well as prednisone, which is why I have been able to come down to 6mg. That is the best treatment so far. But horribly expensive. My copayments were $600/mo last yr; down this year to $374/mo for my infusion of Orenscia. I have had to go without it for 1 yr over the past 3 yrs due to not being able to afford it.

    I’m sorry my introductory post is so long. Angela obviously hit a raw nerve in my love affair w/RA.
    Thanks for listening. I’m up to try anything and have a strong belief that you grow where you’re planted. 🙂
    sincerely,
    Connie

  • Wren moderator
    5 years ago

    Hi, Angela! Would keeping plenty of fruit on hand help? Maybe plenty of cut-up vegetables? Or, instead of potato chips, get some whole-grain tortilla chips?

    Being a true veteran in the long battle against the bulge, I know that the above often doesn’t “sound” good when you’re craving something to eat. Our bodies just seem to want the “bad” food. But keeping the good stuff within reach does help me, at least some of the time.

    Another thing: when you’re hit by a sharp craving, take 10 deep breaths, saying “so” (and drawing it out for the whole long breath) and “hah” on the exhale, again drawing it out. Keeps your mind focused only on the breath, you see. (The monkey mind wants to leap around, here to there and back and again,and saying those words and drawing them out helps to gently bring the monkey back where you want her,) By the time you’ve inhaled and exhaled the last slow breath, the craving should be gone.

    For that time, anyway.

    I haven’t taken any prednisone for an RA flare, though I have taken a pred taper for bursitis. I’ve read so many accounts of the side effects of regular pred, and about its addictive qualities, that I’m terrified of it. I hope never to take it, even if my flares get horrible again.

    Wishing you the best in your battle!

  • Norreen Clark
    5 years ago

    As far as prednisone goes it can make us want to eat. I stay away from the bad stuff. I eat a lot of nut mixed with sunflower seeds and pumpkin seeds. And if I need to chocolate fix I through a few chocolate chips in. A bowle of air poped popcorn with extra virgirin olive oil instead of butter. They help fill me up and they are healthier choices. I hope this helps.

  • Cecilia Jankura
    5 years ago

    Hi – Here’s my story. For 3 1/2 years, I was on low dosages of prednisone ending with one last month at 1/2 mg!!!!I went from being very slim to 40 lbs overweight. I went through 1 1/2 months of serious withdrawals – major flare ups even while on 2 drug treatments (abatacept and methotrexate), and then it subsided overall. Now any flare ups are pretty much related to “overdoing” it – like moving furniture and lifting heavy planters, etc. What I have found is that I can live without the prednisone if I monitor my actions. The prednisone was perpetuating a vicious cycle. Every time I got flare ups, I would go back on and then I would step up my activities – I would feel invincible. Then I would start to go off of it and get physical dependence withdrawals and get flare ups. It was hopeless. So I stuck with it this one last time and went off and I refuse to go back on. I will rest and use pain management when my meds can’t counteract the abuse I have given my no longer invincible self! Anyhow, I went on a weight watcher’s model diet when I started weaning 1/2 mg at a time per month starting at 2.5 mg. I am now off of the prednisone and 35 lbs lighter. I have 5 lbs to go but I am in no hurry. I want this weight to stay off so I am not starving myself. I think weight watcher’s ideas are good but I emphasize the fresh and raw fruits and veggies along with nuts and lean cheeses and meats. I eat a very minimal amount of pasta and bread and absolutely no deserts. Sprinkle a little raw sugar on fresh strawberries rather than the weird concoctions they will try and sell you.
    The whole point here is that I couldn’t lose all of the weight until I went completely off of the prednisone. Period. Even that 1/2 mg affected my metabolism too much. I wish you lots of luck!

  • jan curtice
    5 years ago

    Oh, this was good! I can so relate! Last year, I struggled to lose 50 pounds only to develop some bad breathing problems, among other things. 40 mg prednisone for 2 months = 40 pounds. The good news, I still lost 10 pounds last year 🙂 So, I think my stomach has a permanent growl going. Either the night before or after breakfast, I write on my whiteboard when I can eat and what I will eat. Schedule my meals/snacks. In-between, I tell myself it is the prednisone talking, having a tummy tantrum, Most of the time this works …

  • Angela Lundberg author
    5 years ago

    Hi Jan,
    Thanks for your comment. That’s great you’ve lost 10 lbs in the last year! That’s no small feat. Your whiteboard idea is a good one, too! Good luck with it all….and hang in there. I know how hard it is.

  • Kelly Mack moderator
    5 years ago

    Thanks Angela! So true! I love how prednisone makes me feel, but hate the pesky side effects like increased appetite. I’m currently on an increased dosage and am tracking what I eat carefully, trying to snack smartly between meals (such as fruit or nuts) and notice how I’m feeling. It’s so tough–wish there was a prednisone without those side effects!

  • Angela Lundberg author
    5 years ago

    Thanks for your comment, Kelly! I’m sorry you have to be on prednisone right now, but that’s good that you’re trying to track what you’re eating. Good luck!

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