joat

[joat]

Hello again. How wonderful this Forum is. Have read such a lot of posts in the past couple of days, learnt a lot and wish I had known about them at the start of my journey. I am, at the moment, wondering if I have been on the wrong dose from the start (40mg March 2016) for GCAPMR. GP said to reduce quickly and by Dec had gone down to 15mg. Had a severe flare and Rheumy said stay on that. The point is! I read that pain goes when Pred is taken but I have never been without this strong pain in hips, knees and ankles, at times having to take pain killers and not able to go out. Can anyone suggest what I should do as I am now on 10mg and pain still quite bad. Thanks in advance

[PMRpro Ambassador]

Did the pain not improve at the 40mg either? My suspicion would be that it may not be "just" PMR causing the hip, knee and ankle pain. I had hip pain due to bursitis but it faded after a few months on pred at PMR-level doses.

[joat in reply to PMRpro]

Thanks for quick reply. Fuzzy head syndrome so probably did not explain correctly that was diagnosed with GCA and put on 40 but PMR did not start until a few months later with pain on right side and ache on left. Infusion in Dec sent the left in overdraft and more pain on right. Am I a mystery? Thought it was PMR because could not get out of bed to get to ensuite two feet away. Have slowly improved a little so must keep aiming for the target I set myself and keep smiling! Blood test on Mon and phone call from GP on Thurs but don`t expect any help.

[piglette in reply to joat]

Hi Joat, I am sorry about all your pain. When you could not get out of bed what dose of pred were you on?

[joat in reply to piglette]

Hello piglette. I was on 15 one day 12.5 next, that was last Nov. and was advised to go back to 15.

[PMRpro Ambassador in reply to joat]

Some people need more than that to manage PMR - but there are other causes of similar symptoms.

[joat in reply to PMRpro]

Thanks PMRpro. Perhaps I should bring this up with my GP.