Prednisone and Weight Loss

So the last year of my life has been a living hell...that's putting it lightly. I was battling what seemed to be Adult onset Asthma...starting about 10 months ago after a couple months of being sick pretty much continuously, even had Shingles...at the ripe old age of 31. I delayed going to the doctor, being that I am one of the many under-insured Americans out there. I finally had enough come August after coughing daily for over 8 months and dealing with extreme breathing issues. An X-ray, and many breathing tests showed I had under 50% lung function, and my lungs were cloudy...very cloudy in the x-ray when they should have been clear. I had a bronchoscopy under light sedation to biopsy part of my lung. Those results were inconclusive, they saw severe inflammation, but no idea what was causing it. So now, we are up to 3 weeks ago when they decided a surgical biopsy was in order. That was no fun. I was in the hospital for 3 days. 3 weeks later, I am feeling much better, and the breathing has come back up to where is was before surgery...50%. Lung Biopsy came back this time with results. It's called Bronchiolitis Obliterans Organizing Pneumonia, Or B.O.O.P. for short. I would explain...but this is getting long enough...google if you are so inclined...Anyway, treatment is a year of Prednisone. I have been on 40 mg for a couple weeks now, and I am already dealing with the hunger, bloating, sweating, and not sleeping. Anyone out there been through this? Been on Prednisone for a long period of time? I am already dealing with a weight issues being that I have been sick for almost a year....I need to lose...not gain!

Replies

  • lupie777
    lupie777 Posts: 217 Member
    I have been on prednisone daily for 8 years now with the highest dose being 1000mg by IV. I am currently at 10mg daily and that's the lowest I have been in over 3 years. I wish I could tell you there is an easy answer or that all of the side effects will go away or not happen, but that's not the case. It is a daily struggle to control your appetite and I know everyone is different but I gained 80lbs in 6 months and never could get it off until I had Lapband surgery. It's been a vicious cycle of needing it and hating it. I have 4 autoimmune disorders one of which is secondary addisons from long term steroid use and I will probably never ever be able to completely go off of it now because it has ruined my adrenals. I did start following paleo back in February and it has not only helped my health but I have lost weight and reduced my steroids. I wish you the best of luck and try not to be to hard on yourself. If you can eventually wean off you should lose all the weight you gained. You need it to breathe so it's very important to your health right now.
  • 20yearsyounger
    20yearsyounger Posts: 1,630 Member
    Sorry to hear that. My wife has an autoimmune disease for the last 20+ years (we have been married 8) and our medicine cabinet could be a drug store. Its not easy but she has managed to control her weight over time. You will gain initially, just don't give up hope.
  • bluenoser38
    bluenoser38 Posts: 55 Member
    My heart goes out to you, Fedup. No, I haven't been on prednisone, but my daughter (who will turn 19 tomorrow) has been on it off and on since her early teens. While it's true that when you can't breathe you'll sell your soul for a breath of air, and doctors often willing reach for the prednisone as the magic bullet, please go carefully and listen to your body.

    We (parents and doctors) dragged Kate through an awful lot. I would make her take her prednisone, and force her to go to school even when high dose steroids were causing her to experience vomiting, bloating and general misery (our horrible school board has a "miss 20 classes and you automatically fail" policy, even if your grades are straight As and you have a documented chronic illness). Too much prednisone, and your adrenal glans can start to shut down. When this happened, they put her on Xolair, which essentially destroyed her immune system but worked like magic on her lungs - but she was always sick and at higher risk of spin-offs like pneumonia, pulmonary edema and bronchitis.

    My advice to you would be to do what you need to do to be as well as you can be. Work with a good respirologist who listens to you and considers alternative therapies. Drugs are only ever part of the equation, and we got really lucky in Kate's senior year when we found a pediatric respirologist who put us in touch with a physiotherapist who specialized in chest physiotherapy, psychologists who helped distinguish between a genuine asthma attack and the anxiety attacks that can sometimes accompany it, and even acupuncture.

    Kate is no longer taking daily dose prednisone, and she also stopped taking Xolair (we blame the compromised immune system for a series of lung infections that saw her repeatedly hospitalized and ruined her first year of college). She takes Zenhale as her steriod inhaler, has 'old faithful' (salbutamol puffer), and a magic cocktail for the nebulizer when she needs a aerosol. She'll still take 50mg of prednisone when needed (I gave her the flu just before Christmas, and it was either choke down a 10 day course of prednisone or be hospitalized for her 19th birthday), but the Zenhale is a lot easier on the body and barring influenza, pneumonia, or a bronchial infection it does the trick. I get what you're saying about BOOP; Kate experienced similar challenges after having pneumonia in both lungs and developing pulmonary edema after a bad case of influenza. Give yourself time; if you need surgery, or invasive therapies like having your lungs surgically drained of fluid, you need to give yourself time to bounce back to your normal. It will come.

    Finally, being more physically fit will help, so losing weight and exercising to increase lung capacity is great, but don't put the cart before the horse. It may be hard to do these things while taking a daily dose of 40mg of prednisone, or battling the health challenges your have right now. Do what you can, when you can.
  • Yi5hedr3
    Yi5hedr3 Posts: 2,696 Member
    You forgot to mention bone loss. Best to get off the prednisone, and seek out natural anti-inflammatories like fish oil, vitamin E, Tumeric, etc. Good luck.
  • I was on prednisone for 5years and gained a lot of weight fast in that amount of time. Maybe around 40+ , but as soon as I stopped taking it, I QUICKLY went down to a normal weight. Half was bloating half was actual weight gain from excessive eating.

    -Good Luck with your journey
  • CharlieBeansmomTracey
    CharlieBeansmomTracey Posts: 7,682 Member
    have you asked your dr if you can take something like advair or symbicort(many others) for it? its a corticosteroid and in my opinion better than prednisone. long term prednisone use can cause kidney damage and other things. I was on it off and on when I was younger. the first time was a month. I gained over 25lbs. never did lose it but,then again I didnt try. I had stretchmarks caused from it,even before I had kids. I would look into it and see if there are other meds you can take for it. I read about it and it says there are quite a few.hope you can get this straightened out. I hate prednisone but if I had to take it I guess I would. to prevent being hungry I would say get plenty of fiber,protein,health fats and water. that may make you feel less hungry.
  • fedup30
    fedup30 Posts: 141 Member
    Thank you everyone for the info. I have been on the prednisone now for 13 weeks. I did gain 10lbs in those 13 weeks, but have been holding there for a couple weeks. I am now tapered down to 15mg, and will stay on 15 mg for the next 6-9 months until my lungs clear up. Its been very difficult, fighting the urge to eat. I did not do so well fighting it the first 6 weeks or so, but I was also on 40, then 30 mg of prednisone. I am hoping that now that I am on 15 mg, I can begin to lose some weight. My hunger is still tough to beat in the evenings it is the worst. One day at a time!
  • CharlieBeansmomTracey
    CharlieBeansmomTracey Posts: 7,682 Member
    if you feel hungry try to get plenty of healthy fats,protein and fiber and of course water. that should help you to feel more full longer.