This link
healthunlocked.com/vasculit....
takes you to a post on the VasculitisUK forum which has information about an OMERACT study on the effects of corticosteroids.
I am a Patient Research Partner (PRP) and attended the OMERACT meeting in Whistler 2 years ago. We had a very lively discussion in the group looking at the use of steroids and at the end 2 or 3 doctors told me what I had said about how patients perceive being on pred and their potential problems had made them think hard about their usual practice of trying to force patients to lower doses or even off steroids altogether.
My impression in the conversation was that they frequently don't realise how much steroids contribute to our quality of life by managing the pain and stiffness of PMR symptoms and other symptoms experienced in GCA. They are also unaware that many of their feared side-effects can be managed when you know how to go about it. One of the group, a UK clinician, said to me "Maybe we should be providing more advice about diet..." when I described the success with weight management many people on the forums have achieved by eating lower carb diets.
This is our opportunity to participate in a study looking at how steroids impact our lives - both positive and negative.
