My 14 year olddaughter was on dexamethasone for almost 2 years for acute lymphoblastic leukemia. Had to be stopped early due to stress fracture in knee and the onset of avascular necrosis. She had gained weight and we were told the weight should come off after 6 months to a year. As a teenager she is naturally quite impatient and it's been 5 months now since steroids were stopped and she is actually gaining weight. Still on chemo so fatigue is also an issue but we are watching her diet. Only thing is she is so down in the dumps about her weight she will not leave the house. Only goes out for appointments at clinic. Medical team are lovely but just say we have to wait for the weight to come off and they don't seem concerned about her very low and at times, extremely dark moods. I feel like an over-anxious mummy but my daughter has totally changed and just lost all her sparkle. Heartbreaking. Any experience with stubborn weight after dexamethasone? Thanks in advance
Dexamethasone and weight gain?
Question posted by DonnaRR on 12 March 2021
Last updated on 8 May 2021
Answers
I have asthma since childhood and i am in my 40s now and have taken dexamethasone many times for bad asthma flareup and i have always been thin as a stick. I never had any weight gain because of many steroids including dexamethasone that i have taken on and off in my life for asthma treatment up to, even now in my 40s because of my asthma issue since childhood.. I am vegan so may be it helps too but i have always been thin including even now in my 40s, despite having taken many asthma treatment steroids for my asthma since my childhood up to my current age in 40s
Interesting you have never had any weight gain. From the outset of treatment all children and their families are told that weight gain will always be a side effect of dexamethasone. These kids are on high doses for long periods of time over 2 to 3 years. Maybe that's the difference. I see other kids in clinic every week and believe me, the weight gain is real!! The moon face is real!!! The mood swings, low self-esteem, withdrawn behaviour etc are always issues the parents discuss so I suppose I know it's not just my daughter. Not being cheeky or anything, but could be the amount of meds administered? Of course, there's also the chemo my daughter is still on which leaves her very fatigued and therefore not always able to be active.
This saddens me deeply. I am TRYING to get off of this after taking it for RA 3 months, and it's a life saving medication yet comes with worst withdrawals and side effects of anything I have taken, but being 58 as I am compared to a14 year old finding themselves and developing body and mind is a horror to be fighting depression. A couple things the medicine has done to me is make many mental changes, confusion, I left the house to got to the store 4 miles away and drove back on a wrong turn only to drive 200 miles through another state guessing my way back home. Also ran a stop sign and ran over a bank going 50 miles per hour. Finding myself feeling hopeless and never had that feeling. I eat constently. All I can think is cut out all sugar if possible, perhaps you all can get some sort of activity for excercie, I really really hurt for your daughter
Thank you for your kind words. We are trying everything and after her physio session yesterday she actually went for a short walk by herself. Exhausted afterwards but it's a start. Dexamethasone is a horrible drug albeit life saving. The mood swings, weight gain, insomnia and many more side effects are horrendous. I hope you are coping ok. Take care of yourself
Related topics
weight loss (obesity/overweight), acute lymphoblastic leukemia, leukemia, dexamethasone, weight, aseptic necrosis, knee, fracture, acute
Further information
- Dexamethasone uses and safety info
- Dexamethasone prescribing info & package insert (for Health Professionals)
- Side effects of Dexamethasone (detailed)
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