PMRGCAuk
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You are invited to take part in an OMERACT study on steroid use and their effects - please do have a look

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.

13 Replies
oldestnewest

Completed round 1 😇

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Also completed round 1. No halo for me - don't know how to!

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Obviously you don’t need one! Perhaps it’s built-in 🤔 but here’s one just in case you need it 😇

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Thank you DL, I was feeling in need of something today! You're most kind.

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Done part 1

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Part 1 completed

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Part one completed

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completer round 1. Hopefully this study will confirm Dr Matterson's findings.

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PMRpro,

Just completed round one.

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Done. Cc 🤗

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Round one, done. X

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How do you compete

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Having followed the links - it is closed for this session.

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