Why are you on prednisone and what is your experience?

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I've been off and on high and medium dose prednison for nearly 12 years for a rare autoimmune disorder. I've gained approximately 70 pounds off of it and have been fighting to lose the weight for years. I've lost 30 pounds twice (and gained back and then some) and recently lost 17 pounds (and then gained back and then some more!).

I'm currently down 4.4 pounds from my largest weight ever, and I'm hoping to stick to it and curb the cravings that only those who have been on steroids understand!

Replies

  • beckyhoo
    beckyhoo Posts: 34 Member
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    Hello :)

    Glad to have found this group! I've only been on prednisone for just over a week. I'm taking 40mg per day to treat dermatomyositis. I started MFP about 4 days before starting the meds and have lost 9 pounds so far. I know that is mostly the water weight you lose at the beginning of a diet, but I consider it a victory. The weight gain was my biggest concern as far as side effects.

    I'm looking forward to hearing input from this unique group! Wishing everyone the best of luck and much strength!
  • MinimizingMichelle
    MinimizingMichelle Posts: 96 Member
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    Definitely! Especially on prednisone. It's good to watch your caloric intake.
  • sahmtojandk
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    I've been on Prednisone every day for over 4 years (sporadically for years prior). I'm a lung transplant patient, and we can't ever stop taking it. I took 30mg a day for quite a while but have tapered over the years to my maintenance of 5mg a day. My weight has definitely increased on it, and I can see the tell tale stomach, face, and back of the neck effects. I have lost 9 lbs. since Jan. 2 on MFP, but it is definitely not easy. Since I started working out a lot more effectively (...and at all), the area around my stomach has gone down.
  • lschuttem
    lschuttem Posts: 82 Member
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    Hi everyone!
    I'm so glad I found this group. I try to explain to my friends what it is like to be insatiably hungry (because of the prednisone) and I feel like no one understands this frustrating experience.

    I've been on prednisone for basically 8 years, at various doses, for kidney disease.

    2 weeks ago my kidney disease had a relapse, so I was on 70mg prednisone, and now I'm on 50mg prednisone for a couple weeks, and will hopefully eventually get back down to 10mg or so a day, as long as my kidney function is maintained.

    Last year I was down to 12.5mg prednisone, and I worked really hard and lost 45lbs. Then since I went into kidney failure a couple weeks ago, and increased my prednisone, I've been insatiably hungry, and have gained 15lbs of fat. I feel just soo frsutrated! All the new clothes that I bought after losing weight last year don't fit now. And I'm so hungry that I really just want to eat everything I see.

    How do you all cope with high doses of prednisone and the accompanying hunger?
  • healthygirlforever
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    Hi all! I have been on prednisone for a little over 6 months. I started at 60mg and slowly tapered down to 5, when I relapsed and had to go back up. This just happened and I went up to 30 a couple of days ago. I have recurring pericarditis which my cardiologist thinks is due to an autoimmune deficiency. This past week was miserable, as I am sure some of you know, I couldn't breath, passed out, shakes...just awful. Prednisone is truly a wonder drug for my symptoms, I increased my dosage about 2.5 days ago, and I can already function sooooo much better (though no where close to normal.)

    I didn't have many side effects with the lower dosages, but between 30-60 I had major moon face, didn't get my period and major insomnia/restlessness. I only gained maybe 5lbs since I started, so not too bad, though if I gain 10lb per year I won't be too happy. I do exercise a lot when I am healthy, and that has helped maintain my weight, not lose muscle mass and hopefully combat bone loss.

    Compared to the alternative I would be happy to be on it forever, does any one else like being on it? I feel like it's insurance that my condition won't come back.
  • MinimizingMichelle
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    I LIKE the way I feel on it, but I gain weight like crazy on it!
  • GraceFaithHope
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    I've been on prednisone most of the year, several times through IVs, for asthma / respiratory infection complications. Needed it to breathe, plain and simple, but have ballooned out, puffed up.....gained more weight than I've ever had. I am really glad I found a group like this. I am just getting off it again and healthy enough to think about losing weight. It's pretty overwhelming...
  • GraceFaithHope
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    To deal with the insatiable hunger, I drink so much water, I can almost hear it slosh in my belly! The hunger is crazy, huh? Nighttime is worst of all....cannot sleep, house is quiet.....not easy. What do others do especially with nighttime hunger?
  • gcs173
    gcs173 Posts: 2 Member
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    Hello to the group,

    I just founf this group, didn't think about others that might be in this situation. I may probably be the persone here who has been on Prednisone the longest, lol.
    I was diagnosed with severe Lupus Nephritis at age 11, I have been on Prednisone for ....wait for it.....32 years. Yep.

    The lowest I have been able to reach is 15mg per day.
    I spent almost 8 years on 50mg/ day, ouch...!!!

    What has Prednisone done to me in term sof side-effects? Ièm sure many of you are intrigued to know!!!

    I have Avascualr Necrosis (AVN) since the age of 19, had both my hips totally replaced. Actually, I would prefer not to mention the side-effects, it kinda gets me down. Plus, I certainly do not want to discourage anyone here.

    My Lupus has never been in remission. I no longer have the hunger side-effect. The hunger is an initial side-effect, the most common of course.

    I hope to one day be Prednisone free. Having tried so many times to taper, and wena off with Adrenal supplemenst and DHEA.. But since you all know that Prednisone is a hormone that the body produces naturally, after years of dependance on the drug, my body no llonger makes this hormone.

    The lesson here is never stop taking your Prednisone suddenlty or cold turkey. You may go into Adrenal insufficiency:

    http://en.wikipedia.org/wiki/Adrenal_insufficiency

    If anyone has questions, I would be happy to try and answer.
  • cortmom
    cortmom Posts: 23 Member
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    I have been on Cortisone for 7 years now nonstop. I have been up and down and I dread all the time about being on it. It has changed my life in so many ways. I went from skinny to extremely obese, that would not go down until I reduced. Each time I reduced it would drop like 5 kgs. On top of the stretchmarks I have all over and the constant pregnant looking belly. I am finally down to a level where my face is not looking round and puffy but still have the circles and bags. Because I lost weight I have skin hanging which causes many issues in itself. I can not get surgery to remove since I am on many meds and still on cortisone, along with being over weight. Because I blew up my husband has lost interest in me and though it is not my fault we have marriage issues. In the beginning I refused to look in the mirror because I could not recognize myself. Now it is tolerable but still not what I remember. I used to not be in pictures with my young sons because I hated my self so much and did not want them to remember me looking like that. I eventually got over that and realized they needed pictures of me. The emotional swings you get from the drug are also intolerable and not well liked by my family, but again I try to not let them happen, but not always can I control it. On top of all it I go through hot flashes because the medicine has put me in a menopause. I can not tolerate change in temperatures too hot or too cold never an inbetween. In my profile picture you can see the biggest I got when I was on 65mg of cortisone to stop the disease of Wegeners before it killed me.
  • sexyslimkim
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    I dont know why I'm on prednisone. I have hives that no one can explain. My GP, gyneo, dermatologist, allergist and now rheumatologist don't know what they are doing. I would feel better if I knew what I had instead of suffering for some unknown reason. I thinkI will try an herbist next. The problem is I cant find one in Georgia.