Wait until I'm pain-free before tapering the Pred?

[Alvern]

Hi, I’m a 77 year old lady and I’ve had PMR for 4 years. I was started on 15mg daily Pred and slowly got down to 3mg just over a year ago. However, I then one day had a severe headache and could not speak, I thought it was a mini-stroke. My GP told me anyway to raise my Pred to 10mg and sent me to the A&E to be checked for a possible TIA. The nurse at A&E knew nothing about PMR or GCA and put me through an MRI scan, she thought that I probably did have a mini-stroke and arranged for me to see a ‘stroke man’ consultant at my local hospital. The consultant did know about PMR and GCA and after all the heart tests were satisfactory, agreed that I probably did have a GCA episode, not a mini-stroke. I then slowly got back down to 4mg Pred a month ago but I was beginning to have pains in my legs probably not helped by having the Flu jab one week and a Covid jab the next. So, my rheumy nurse raised me to 7mg. She now says my blood samples show 2 inflammation pointers but wants me to reduce by 1mg starting 2nd October. I am very reluctant to reduce at all at the moment because I am still having real pain in my legs. Should I only reduce by maybe ½mg or not at all until I’m pain-free? I am leaning towards telling the nurse that I should wait until I’m pain-free but any thoughts would be appreciated.

[DorsetLady PMRGCAuk volunteer]

Rheumy nurse is wrong, you should not reduce when you have raised inflammation markers - and certainly not when you have pain as well.

Think you need to tell her [politely but firmly] you would like more tests to see if the inflammation markers have improved, stayed the same or increased….. before you consider reducing.

[PMRpro Ambassador]

If you have raised inflammation markers then DO NOT reduce the pred. What on earth was she thinking about! Raised markers AND symptoms really suggests a flare that isn't under control - and she raised the dose because of the symptoms. They do need to be under control before you start to reduce.