Stopping the steroids

FormerMember
FormerMember
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I finally came to the conclusion that I wanted to stop taking steroids as part of my treatment for blood cancer as the lack of sleep and the emotional highs and lows were wearing me out, and to my surprise my doctor agreed to give it a go without them but monitor the situation. I’m hoping my sleep patterns will improve, has anyone got any experience of coming off steroids and it improving their insomnia.

  • FormerMember
    FormerMember

    Hi

    In short, yes! I find steroids very difficult to take. They make sleeping more than an hour or two at a time impossible and turn me into a hell hound. I had a meltdown on steroids one time because someone had brought me yellow roses when they knew I only liked pink ones. I pity anyone living with me when I have to take them. 

    And yes, when I come off them my sleep and mood improve. I have chronic insomnia and I regard four hours unbroken sleep as a good night and six as an extraordinary achievement but it’s way better than one. 

    I hope you’ll find that both your sleep and your equanimity return 

    xxx

  • FormerMember
    FormerMember in reply to FormerMember

    Dear daloni, thanks for that feedback, I actually slept through until 5.30am this morning which is unheard of for me, I did wake up in the night but managed to get back to sleep, so the effects of the steroids seem to be wearing off already. I just decided at this point I wanted to be on a even keel rather than the rise and fall that comes with 20mg dexamethasone. I am always trying to balance the treatment against quality of life so I thought it was worth trying to come off them. I can always start again if there is a problem.

  • FormerMember
    FormerMember in reply to FormerMember

    Indeed you can, . It’s all a balance. I think of it like a pendulum. It’s worth keeping the pendulum swinging gently through as small an arc as possible. The bigger the swing one way, the bigger the other. Excuse me if this sounds nutty. I’ve had a bad night and I’ve been listening to a Terry Pratchett audiobook so I may have come over all metaphysical 

    xx