Steroid protocol

Hi, I have been on steroids since 2009 and am currently taking 20mg to which is where I have reduced it to. When started no steroids I was given no advice or instructions on how to take them or when to increase the dose. For instance increasing the dose when I have the flu jab. The question I am asking is?

Has anyone got a typed list or card of why and when additional or even a reduction is required?​

2 Replies

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  • Are you under the care of a GP or rheumatologist? They really should have given you advice on dosage and reduction. For most people, the goal is to eventually wean off of steroids if possible, or at least try to reduce to the lowest dosage possible without having a flare up of symptoms, since long-term usage of steroids can have some bad side effects, such as osteoporosis.

  • Hi, You should be taking the steroids in the mornings otherwise your sleep patterns will be disturbed.

    You should not increase or decrease your dose without your doctors permission. If you stop taking the steroids without decreasing the dose you will have withdrawal symptoms such as all your lupus symptoms magnified.

    I had the flu jab last week and I didn't have to have my dose of steroid increased. Please talk to your GP and or Rheumatologist re advice on taking your meds.

    Have you had a bone density test done? If not you will need to ask about having this done to make sure you haven't got osteoporosis as Steroids can damage your bones.

    Take care 🌻

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