Steroid withdrawal symptoms?

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GoldenGirls
GoldenGirls Member Posts: 608
edited August 2016 in Stage IV/Metastatic Breast Cancer ONLY

My mother was put on a steroid (Decardon) a couple of months back to help with back pain before spinal rads. During this time she ended up fracturing her femur and was just recently released from the hospital after 7+ weeks. A few weeks back she took it upon herself to cut down her dose without consulting the doctor who was in the process of weaning her off of them properly. Around the same time she began to experience extreme fatigue and started getting lightheaded/dizzy on standing every now and again and it got even worse when she cut her dose down further. A few days back she added back the dose that she'd most recently cut and by the next morning her fatigue had improved greatly and for a couple of days had no lightheaded/dizzy spells at all. Today they are back and still only happen on standing once in a while.

She doesn't see her onc until next week and has so far refused to let any of her doctors know that she's been messing with the dose on her own. I understand that steroids need to be weaned very gradually because of the side effects but am hoping to hear from someone else who has experienced withdrawal symptoms from Decadron or the like.

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  • blondedoris
    blondedoris Member Posts: 197
    edited August 2016

    Heya

    I was on Dexamethasone (same as decahedron) for a couple of months - it's a vile drug but it's meant to be one of the best for preventing brain swelling. I was put on it whilst I had radiation to the skull for bone lesions.

    When cutting back on the drug, it needs to be done slowly - I ended up reducing the dose by 0.5mg a week. Whilst coming off the drug, I experienced nausea, insomnia, dizziness, fatigue and cramps. If the symptoms get too severe, the advice was to increase the dose again.

    It took about six weeks after the last dose for the symptoms to abate, and it also leaves your immune system more vulnerable to infections (my GP has told me that can last for around 3 months after the last dose).

    It's a complicated medication - your poor mum really needs to talk to her doctor about coming off and what she's experiencing.

    x

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  • GoldenGirls
    GoldenGirls Member Posts: 608
    edited August 2016

    Thank you so much for sharing your experience. Was your dizziness also only on standing? We can't help but worry that it's something more sinister with her being off chemo while her leg healed from surgery, but the timing of the symptoms leads me to suspect it's related to the steroid withdrawal. She cut it down considerably all on her own while still in rehab for her leg and her nurses had no clue. She cut even further during her last week there and that's when the extreme fatigue, mood swings and dizziness began. I guess I'll have to be a tatletail and tell on her when we see the oncologist!

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