low dose still having reduction problems

[JOHNONE28]

For the 2nd time I am having problems reducing when I go below 4 mg of preds. This time I have been reducing by a1/4 mg/month, with symptoms increasing slightly with each reduction I'm now down to 2 1/2 & now feel that j must go back up to 4 due to increased pain & stiffness. Although during this latest period I have moved house with all the work that this has entailed including some heavy gardening, As an aside One G'P at my surgery said that I may never be able to come off preds completely.I was diagnosed 22 months ago starting on 15mg & was told by rheumy that I should expect to be on the preds for 18 months. Any comments will be appreciated

[DorsetLady PMRGCAuk volunteer]

Hi Johnone28,

Maybe you are one of those people who has reached their threshold at 4mg, can't say from experience because I haven't got that low yet. Or it could be because you have done too much in your house move. Perhaps your best plan is to go back up to 4mg and stay at that dose until pain is stabilised.

You say you are decreasing by 1/4mg each time, but are you doing it overnight, or staggered as per PMRPro's advise to many (me included). That might help. It seems long-winded, but if it stops the ups and downs I'd rather go that way.

As I said at the start, maybe 4mgs is a low as you can get. There's no point going lower just for the sake of it if the pain is still there. You might need to do a bit of experimenting. Good luck, and let us know how things go, DorsetLady.

[PMRpro Ambassador]

As DorsetLady has said - maybe you have simply reached the endpoint of the exercise in reducing; "the lowest dose that manages the symptoms acceptably". It won't be zero until the underlying autoimmune disorder that cause the symptoms we call PMR has burnt out and gone into remission. As long as it is active you will need some pred. If you are good at 4mg - then take that!

The GP is right - and far more realistic. Don't what world that rheumy is living in but it isn't the one I inhabit! I have finally got to 4mg - after having had PMR for a good 10 years. Three mg was a step too far. The literature reckons that about a quarter of patients may get off pred in 1 to 2 years - and that group is at a higher risk of relapse at some later point. But moving house and reducing at the same time is pushing your luck a bit! It was a house move that sent my PMR from Ok-ish without medication to "I can't move or get out of bed without screaming" meltdown.

[JOHNONE28 in reply to PMRpro]

I thank you for your comments I have gone back up to 4mg today & will see how it goes try another reduction when everything in my life is more stable

[optimist-ok]

Hello Johnone28. I am stuck on 5mg after 3+ yrs of PMR/GCA. Like you I have found that reducing too far (I did get down to 2mg!) allowed the symptoms to start up again. My Rheumatologist has told me to stay on 5mg now for the next 6months. So far the last 5 blood tests have had raised markers - waiting to see what this week's result is. Hope you see some improvement soon.