Same old same old

[Avadip12]

Well here I am again still stuck in fatigued and stiff sore body trying to just drag myself on. It been 3 mths since my synatchen test that was normal. So still just trying to get down on the steroids and don’t feel any different . Don’t know if it’s post covid , flair, steroid withdrawal ( doing 1/2 mg a month ) down at 3 mg. So the problem is we are off for a tour of Scotland with the dog, and I am considering increasing my does for a short while so I can enjoy my holiday . It’s 11 am now and I am trying to get moving it so so tough.

Please can someone in the know suggest what I need to up to and after 14 days what I can drop down to. I have done it before over the 15 yrs of my PMR but this time I want to do the minimum and return the quickest .

Yes your Wright if you are thinking my PRM has been chaotic . It’s because I keep having life events that require me to be more alert and with energy .

Thank you , knowledgeable ones for your continued support .

[PMRpro Ambassador]

Do I get the impression it is mornings that are particularly bad? Maybe changing the time of taking the pred might help? Difficult to know how much extra you might need - just have to try. At what dose did you last feel reasonably good?

[Avadip12 in reply to PMRpro]

Thanks for reply 6 mgs seems to boost me . After 15 days would it be feasible to go back to 2.5 mgs . Think I am going to try this , I have been told that I no longer have PMR . I don’t think they know the full picture. I know my synatchen was normal after 3 days without any steroids and I didn’t feel any different for missing it. Just my normal rotten fatigue and body soreness. It will be interesting

[PMRpro Ambassador in reply to Avadip12]

They not only don't know the full picture - but they CANNOT know you no longer have PMR because there is no way of knowing that except reducing your pred dose to zero and remaining at zero for at least 6 months. It can take weeks for enough inflammation to build up enough to cause symptoms and normal range blood markers are meaningless because they only show you are still on enough pred to manage the inflammation enough to not trigger the liver to produce the proteins that raise them.

You say fatigue and "body soreness" - both of which could actually be the signs your PMR isn't entirely under wraps.