I am on 7mg steroids at the moment and I have been weaning off steroids steadily for about a year or more I would say.
I have been on steroids for over 4 years now. I have been as low as 5.5mg before. Previously, any time I have been under 10mg, I experienced the usual symptoms of an upcoming flare and I ended up flaring so my dosage was always increased.
I always experienced mood changes such as irritableness and anxiety and related symptoms when I was on higher dosages (from about 15mg-20mg or just when it was initially increased) but I never experienced mood changes getting lower on steroids.
I am going through a very long period of feeling over emotional, experiencing low mood and just generally struggling with regulating my emotions.
I read that steroids regulates hormones (please correct me if I'm wrong!) and I have been told that when you're over 7mg steroids your body shuts off creating steroids itself but will have to turn back on when you're under 7mg.
I am just wondering, is this bout of unregulated emotions due to the fact my body is actually trying to create its own steroids this time? Or is it something else?
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Sandy1212
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Definitely steroids struggling to get going again -have a look at this link from other forum (PMRGCAuk) you should be able to read it without joining, but if not it’s easy enough -
No certainties - but very probably the case. While you are on above about 7mg (it varies from person to person) the body "thermostat" knows there is enough corticosteroid around to run the shop (it is essential to life, but the body doesn't care if it is natural cortisol or pred tablets). As the dose falls, the HPA axis (hypothalamus/pituitary/adrenal set-up) has to come out of hibernation and do some topping up. It doesn't happen overnight and is a bit erratic to start with. One symptom of low cortisol is mood swings, anxiety and some other things including fatigue. In general, you can feel quite unwell and that in itself creates a vicious circle. The only way to get the adrenals back to working properly is to stick it out - some people almost end up hibernating to get through it. Not very practical sometimes but that's the bottom line.
Well done on weaning off steroids. I've found that this last bit of the steroids journey (going from 7 or 5 to 0mg) is the most difficult one, especially after taking them for very long (years) but not impossible! It's when I feel most symptoms of steroids withdrawal plus some lupus symptoms together. However, I keep going until I'm off steroids. I always assume that I will have some lupus symptoms back (like joint pain), but I also try to keep taking my immunosuppressant (Azathropine, or mycophenolate, etc) and HCQ so avoid going back to flaring up. So yes, I do feel mood changes, feel sweaty, headaches, dizziness, hunger changes, sleep changes, when withdrawing steroids. And some of my lupus symptoms like muscle and joint pain.
Hi Dalilatm! Thank you for sharing your experience, sorry to hear it was difficult for you. Congratulations to you too for weaning as well and i hope that your symptoms are as bad as they once were and stay that way🙏🏽
Hi Sandy. I’m at 3 mg. Been going down for two months from 41/2. Will be atv3,at lest 3 more weeks. This is my third try in about 9 months. I’m sticking it out even though my left hip is screaming. I’m right there with you. MrsMarigold
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