Hey everyone, it’s been a minute!
So I’ve been on steroids (decadron) for just about a year now. I was able to get off of them for about a month in March, but had to get back on them because brain swelling kept causing me headaches and migraines.
Since being on steroids, I’ve gained about 30lbs. Ive always been active and athletic and didn’t have to worry too much about my weight, so this has been pretty hard. Especially because doing much activity brings on headaches and migraines (I’ve talked to the docs about this, don’t worry—my dream of running a marathon is on hold for now).
All of this to say, has anyone who has been on steroids for an extended period of time has any luck with maintaining or losing weight, particularly when physical activity is difficult? And for those who have been off steroids—did the weight gained come off over time? Trying to see the light at the end of the tunnel here.
Thanks everyone!
Sorry to hear your struggles, and I am no expert but can pass along a few things. I was fortunate and only completed a course of steroids post bleed, and did not require any post GK. Steroids effect your metabolism, and how your body processes/deposits fats stores. Weight gain is really common, particularly when the normal level of activity is difficult to maintain. I often say to friends that you can’t out run a bad diet, not saying your diet is not super healthy but with a slower metabolism it may come down to caloric intake. Trying to reduce some calories may help. I would guess it will take some adjustment based on energy levels to stay active but also taking in enough to maintain. The metabolic effect of the steroids makes this really difficult.
I also know of some members, amcoffey being one who had significant challenges following cyber knife with swelling and effects if steroids. She was able to find great relief with the hyperbaric chamber, which may be worth looking into with your care provider to supplement your treatment.
Like I said, I am no expert but do pay a lot of attention to caloric and electrolyte intake and estimated burn. I also have to do this in reverse in some activities I do or I end up running into a variety of energy and cramping issues. You will do your marathon one day! I wish I coule be more help, john.
I was on the steroids on/off for about 7-8 months. Lost all the extra weight that I gained quite soon after I finally tapered off fully. Best wishes to you.
Thanks John, that’s good info! I’m trying to be more mindful of what I eat so hopefully that helps slow/prevent any more weight gain while I’m on the steroids. The plan is to be off of them in about 5 more weeks, so fingers crossed!
Thank you for sharing your experience, that makes me feel hopeful!