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The battle of the Prednisone belly bulge

The Battle of the Prednisone Belly Bulge

When I stepped on the scale at the doctor’s office this afternoon and saw the numbers flash before me, I let out an automatic and horrified yelp, “OH NO!” Oh no is right. I’ve gained weight again–the 5 lbs I worked so hard to lose before my trip out East in mid-November and then some in addition to that. Great. But I know it didn’t just mysteriously jump onto my body, although sometimes it does feel that way. Yet I can blame the evil prednisone for some of it. For making me bloated and screwing with my metabolism (do I still have a metabolism?) and for making me want to devour loaves of white bread and cups of sugar.  And chocolate (but I blame that on genes inherited from my chocolate-crazy parents).

I still swear this scale is wrong; I tried to convince my doctor of this a few weeks ago but he didn’t buy it. But I admit that I desperately need to lose weight. No more messing around! No more peanut butter and jelly sandwiches in the middle of the night–not that I do that. No more being lazy and mindlessly eating crap because I’m bored or tired or anxious or sad and need something to do with my hands (or mouth). Maybe I should take up smoking? No, no. Terrible joke.

But seriously, I do know what I need to do in order to lose weight again: track my food and calories. In the past I’ve used the Spark People website to track everything I eat every day and it actually worked. The first time I used it, I was afraid this task would prove to be too daunting and annoying and make my borderline OCD worse (How many calories do I have left? Can I eat this now? Did I mark down that Ritz cracker? Don’t think about the cheese in the fridge! Don’t think about it! Don’t think about food ever again! Ahhh!). But to my great surprise, it wasn’t bad at all! Tracking my food didn’t make me feel crazy, like counting points using Weight Watchers had. I only tried three days of being on Weight Watchers before I had to stop, convinced I was developing some sort of point-counting mental illness. My mother, who was also doing the program, just rolled her eyes at me.

Let’s get back to my appointment today at the clinic. My doctor (therapist) tried to console me a little bit by bringing up the fact that it’s not unusual to gain weight during Christmas and the holidays because of all of the extra food around and parties and things like that. Yes, yes, I know. But I also know that just because I’m invited to three Thanksgiving parties in New Jersey, that doesn’t mean I need to stuff my face with pumpkin pie at each one (okay, one was apple pie).

Prednisone + the holidays is maybe the worst combination possible. And unfortunately I’ve had to go back on prednisone once again because my RA flared up during my trip and hasn’t totally calmed down yet. While I was out of town and walking all over the place, dragging heavy luggage around, I was ecstatic to see my clothes starting to fit better and looser again. I was beginning to resemble my old self, and not the faux-pregnant humpback steroid lady I usually look like.

Well, Prednisone Belly Humpback Lady is back, uglier and bulge-ier than ever (I know I just made up that word). I’m waiting for some stranger to ask me some day when the “blessed event” is. Just like I’m waiting for the first time someone yells at me for using a handicapped parking spot. In both cases, I fantasize about hissing, “I have rheumatoid arthritis” and then giving them the ultimate look of death.

The good thing about stopping to really look in the mirror and seeing that you have prednisone belly and weird neck hump again is that these images make you simultaneously disgusted and determined to lose the weight and the weird bulges as soon as possible. Is that neck lump still there? Yep. No bagels for me today!

Today was a bad day at the doctor but also a good day. The horror of standing on that scale only reinforced my desire to lose weight and be physically healthier in the new year.

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

  • Josephine LaCascia
    4 years ago

    I have severe rheumatoid arthritis with all the deformities that go with it. Started in my late 30’s and am now 81. Doctor says I am in remission, but all the deformities exist. My RA doctor told me there was nothing more he could do for me. Goodbye! Went to another doctor and told him I wanted quality of life, not quantity. He put me on prednisone and I gained 50 lbs. I was 170 at the time. What a shock that was, but at least no pain for a while. Not much body pain still miraculously, but have now developed neuropathy mostly in feet. Another pill for that. Fluid gain from prednisone, so lasix for that.

  • Davida Jones
    4 years ago

    I understand how you feel. I was diagnosed two years ago and it was so bad that I was take a very large dose of prednisone. I gained 45 pounds from all the bloating and of course I was over eating. So you know what I did, I started using a salad plate as my dinner plate. I made sure that half of the plate was all veggies. The other half was my protein and grains and such. I also bought sugarless hard candy that I could have anytime I felt the urge to eat something. After about a month of doing that, and my doctor lowering my dosage of the prednisone, I ended up losing 75 pounds. That was an extra 30 pounds and the 45 that I had gained. Now that I continue to eat this way and I gave up soda. I do not even drink diet soda. I stick to a lot of water and tea that is sweetened with artificial sweetener. I do not drink alcohol because I never cared for it. But it has been proven that one glass of red wine a day is good for you. I am now only taking ten milligrams of prednisone a day, but I also take a biologic once a week. I also take many other medications because I have three more auto immune diseases in addition to the RA.
    I do hope this information is helpful to you. I do wish you good healthy, painless days.

    With Respect,

    Davida Jones

  • GingerS
    4 years ago

    As someone who has fought the battle of the bulge all my life. I totally understand about weight gain and loss. Currently, I am on prednisone 5mg every day. In the last year, I have lost 95 pounds. I too was afraid of the weight gain from prednisone. The key is to watch your carb and sugar intake. What I have done. I substitute sugar with stevia and minimal carb intake. It is still working for me. I never count calories! Just carb and sugar intake. When I have the “prednisone effect”(craving for foods) I make sure I eat fruit or vegetables to snack on. This really helps. Also watch the amount of your salt intake. Hope this helps you. Good luck!

  • Kayla Gallo
    4 years ago

    Amen sister. I’ve been on varying degrees of prednisone for at least 10 of the 15+ years I’ve had RA. Around the time I was first diagnosed, the university hospital near me had just lost its’ pediatric rheumatologist so I was scheduled with the head of rheumatology, who for his title was surprisingly ill equipped at dealing with children. After a while I found myself highly over-medicated and on gargantuan amounts of prednisone (my great uncle who was battling colon cancer at the time and I were on about the same dose.) I’m always puffy (to put it nicely) while I’m on prednisone. The only exception is right now. I’m going through a particularly horrific flare at the moment. For the first time in my life I’m experiencing the “weight loss” symptom you always read about but never believe. I always thought doctors threw that one in there to make patients feel better (like “Hey, there there, don’t be sad; see, you can lose weight as a symptom!”) I know how rough it can be to look yourself in the mirror during those times, it just makes everything ten times worse. Hang in there hun, you’re beautiful no matter what! Stay strong!
    -Kayla

  • Karen
    4 years ago

    I gained 30 pounds on Prednisone, in about five months. I had to go on it because I had breast cancer last summer and have not been able to take any immune suppressant since July so my RA has been been running rampant, along with my fibro. And to top it off, I’m on cancer meds that cause extreme bone pain. My rheumy prescribed 10 mg of prednisone daily. Now I’m down to 5 mg and as a result I’m in agony and walking with a walker but it’d be even worse with no prednisone. I empathize with you.

  • Angela Lundberg author
    4 years ago

    Hi Karen,

    I’m so sorry to hear about all of your health struggles. Breast cancer and RA…I can’t imagine. But I’m glad to hear that you’re down to only 5 mg of prednisone now. I hope the doctors can help relieve your pain somehow, and soon. Is your cancer in remission? I hope so!

    Thank you for reading my article and for your comments. I appreciate it.

  • Tiffany A.
    5 years ago

    This post made me want to cry. I was diagnosed with JRA back when I was 3 years old. I’m now 26; in the last 23 years I couldn’t even say how many times I’ve been on Prednisone. My last experience with it was 2010. I ballooned 15 lbs., I only took it a couple months. Now my face hasn’t gone back down and I have the huge lump on my neck. This is the FIRST time I’ve ever seen anyone else ever say anything about the lump. I’ve had a doctor tell me before it was caused by the Prednisone. I hate it. I once had someone point it out and ask what it was. I’ve been extremely self-conscious about it ever since. I was feel like everyone is staring at it. I will NEVER take Prednisone again. I’m currently on Methotrexate and Humira.

  • Angela Lundberg author
    4 years ago

    Hi Tiffany,

    I’m really sorry if my post upset you and made you feel bad. I was trying to use humor (perhaps badly!) to try to lighten the situation of having to deal with this disease and all of the additional awful side effects that come with it. Hopefully your body and metabolism will return to normal, or get much better, with you not being on prednisone any longer. I’m also willing to bet that most people don’t notice your neck lump or that anything looks unusual about you!

    I have noticed that when I do manage to lose weight, my neck lump goes away. It’s just extra fat collecting in a weird place because of the steroid. Unfortunately, once you stop taking prednisone, the weight you’ve gained while on it doesn’t just disappear. You have to work to get rid of it. That drives me crazy and feels so unfair! I feel your pain and I hope you feel better soon!

  • Kat
    5 years ago

    Sounds familiar 🙂 “faux-pregnant humpback steroid lady” is accurate but made me laugh 🙂 I have been on 5mg prednisone for all of the 16 months since my diagnosis and have gained 20 lbs the first year. Over the holidays I came down sick with bronchitis and a sinus infection so they upped the pred to 20mg/day which helped with the infection but then I suddenly couldn’t breathe again so they thought maybe pulmonary embolism, though all my tests were clear. Turned out the higher dose of prednisone had raised my blood pressure (I’ve never had high blood pressure, ever, in fact I’m normally low) and was stressing my heart. Definitely fluid. So now we’re weaning me back down on the prednisone, and I’m on a low-salt diet and water pill temporarily. (Talk about feeling like an old lady. :)) No wonder they call prednisone the Devil’s Tic Tacs.

    Jaide, I’m on Actemra since November and I like it so far. Took about 3 months to kick in but it seems to be helping now. Side effects are like MTX, feeling blah the day after injection but then pretty much okay.

    Maybe we should all be SparkPeople buddies 🙂

  • Angela Lundberg author
    4 years ago

    Hi Kat,

    Thank you for your comment! And I’m happy to hear my post made you laugh a little bit. Haha…the Devil’s Tic Tacs! I love that.

    I finally got back on SparkPeople TODAY, actually. And diligently tracked everything and stuck to it. I’m “ACL763” on there.

    Best of luck weaning off the prednisone! I’ve also taken a water pill in the past but it didn’t do much, I seem to remember.

  • jaide winn
    5 years ago

    So when you change over to Actemra, do you have to stop MTX? I would want to wean off the Prednisone. We’re you on Remicade before Actemra, and if so, do you think it works better? What is Spark People?

  • jaide winn
    5 years ago

    I do take Prednisone, but only 5mg. The strange thing is when I am off of it my weight goes up 5 lbs, then when I start back on it, then it goes back down. But, I know it is just the fluid. Even though, 5 mgs isn’t much, it makes a huge difference. I use an app called Carb Tracker to keep up with my intake. You can set it to keep up with calories, protein, carbs, etc. It is easy to use, and I like that. I seem to do better being on a low carb, higher protein diet. But, I don’t take it to the extreme. I like Weight Watchers, but with my symptoms, I can’t commit to weekly meetings. Angela, did you ever try Actemra? I am on Remicade, MTX, and Prednisone now, but I still am struggling. Plus, the winter weather changes are horrible, and make life rougher. If you have any input on Actemra, I would appreciate it. Thank you for all your articles. They are very good.

  • Angela Lundberg author
    4 years ago

    Hi Jaide,

    Thank you for your comment and your kind words about my articles. I appreciate it! That does sound strange that you LOSE weight when you go on prednisone. I wish I had that problem! ha. I just started Actemra, actually, and had my first infusion at the end of January. I’m having my second infusion next week. I flared up not long after the infusion last month and I had to go on more prednisone. The flare seems to be gone now though. I really hope Actemra will work and will kick in soon. I’m switching from Remicade which I’ve been on for the last 8 years, I think. I’m still taking methotrexate–20 mg weekly.

  • Wren moderator
    5 years ago

    Oh, Angela. I know exactly what you mean, except … I’ve never taken prednisone. All my extra weight is simply from enjoying my food too much and not moving my body as much as I should. And yet, my RA has a large role in my overweight, too, because it often inhibits me when I DO manage to resolve to exercise.

    Your story, though, makes me glad I’ve never taken prednisone for my RA pain. And because I also have osteoporosis, my rheumatologist won’t prescribe it, as it contributes to thinning bones. (Don’t need any help with that!) Your story also makes me want to give you a hug and tell you it will be OK.

    I tried Spark People a few years ago, too. And yes, it also helped me. Thank you very much for reminding me about it. I think I’ll wake up my old account and see if I can get back to being mindful about what and how much I put into my mouth again. I’ve done it before. I know I can do it again.

    Want some moral support? I’m here!

  • Angela Lundberg author
    4 years ago

    Hi Wren!

    Wow, I can’t believe you’ve never taken prednisone. That’s great you’ve managed to avoid it. Yes, not only the weight gain but the risk of bone loss makes prednisone especially nasty. I just had a bone scan and luckily it came back normal.

    Thank you for your kind words and your support! I can definitely use it and reassurance that things will be OK. 🙂

    Like I just replied to Kat on here, I finally started up tracking again on SparkPeople TODAY! And I was strict and diligent about it. The last time I really stuck with it I did lose weight and I know I can do it again. And so can you! Go for it! I’m “ACL763” on there.

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