Advice please

[Griggser]

I having been up and down on preds for various reasons. As high as 40mg and as low as 9mg. Currently I am taking 15mg of pred and 20mg of leflonumide. Since going below 20mg I have had more hip and shoulder pain as well as problems with my feet. These are all more prominent in the mornings and sleep is not great as I am in discomfort. My question is do you think I should try to split the preds up a bit by taking some in the morning and the other part before going to bed? If so what sort of split would you recommend? I have only just started on the leflunomide so don't expect any benefit for the first 6 weeks!

I am in less pain than when I was without preds so at least that's something. I am signed off for a month from work which is just as well as that would be a real struggle. Went to visit my daughter and son in law at the weekend in Oxford, driving from Truro, and I just couldn't manage the drive so my wife drove 2/3rds of the way up and back. I did a bit of work whilst there helping to insulate their shed and boy did I pay for it on Monday! Went to M&S to do some Christmas shopping and after 5 minutes I was whacked out. Spent the rest of the day in the chair.

Really fed up with this condition controlling what I can and can't do and the pay back for doing that bit extra when you feel a bit better?

[Celtic PMRGCAuk volunteer]

Griggser, although it is generally recommended that we take our Pred as early in the day as possible, there are a few patients who have found that splitting their dose morning and night has helped to reduce their early morning discomfort. It is very much trial and error - what works for one may not work for another. If you do decide to go down this route, then try splitting it by taking two-thirds in the morning and one-third at night. And no repeats of a long weekend drive and all that 'do-it-yourself', followed by Christmas shopping - even I, who is well into remission and off steroids, would find my body rebelling! Good luck and do let us know how you get on.

[PMRpro Ambassador]

Are you sure that the problems are PMR? Most people should be fairly well managed at 15 - but you say you have had problems since below 20mg. Needless to say, in your position I'd be discussing the pain with my Bowen therapist! That's the easy way to get something done about myofascial pain syndrome!

But as Celtic says - you have to do your part in the management too. Long drives and helping with the DIY are NOT sensible management! I actually found I was better driving than being in the passenger seat - I assumed it was a combination of having a lumbar support in the driver's seat and you are always moving a bit when driving a non-automatic car.

[Griggser in reply to PMRpro]

Hi PMRpro, well after the last few months of upping and downing the steroids the rheumy is convinced that it is PMR. I'm not sure if it makes any difference as to what size you are and the amount of steroids needed to get the same sort of relief I think we have all come to expect at 15mg. I am 6' 3" and just shy of 18 stone! I tried taking 5mg last night and will be trying with 10mg this morning with 5mg again tonight. Last nights sleep was no better but I'm going to give it a few days at this new regime and see how it goes. I think your right I should try the Bowen technique, I was booked in earlier in the year but missed the appointment due to flight delays and never got around to rebooking. I hear what you and Celtic say about doing my part in managemen and I am trying but it's so difficult when you have always been a doer!

[PMRpro Ambassador in reply to Griggser]

Ah - I think that that could be answering the question! There is slowly light dawning amongst some doctor that a "one dose fits all" approach may not work and that a larger person probably needs a larger dose! You are probably half as heavy again as most of us - and if we need 10mg, you would very likely need 15mg!

It isn't so much a case of doing nothing and resting as adapting what you do and avoiding the things that really cause problems. And intermittent resting allows you to do a LOT more of anything - if you use the muscles and they become exhausted due to lack of a good oxygen supply and accumulation of lactate, as in claudication, a good rest will let them recover somewhat. Allowing them that recovery period before they get into extremis should postpone it and if you repeat that may let you do far far more than if you don't rest.

[Suetum]

I so agree the frustration of not doing is the hardest part but as they all say here we have to be kind to ourselves.

[Dobermanlover]

Yes, it really does get you down some days! Most days I feel Ok and thank my lucky stars it isn't something worse and that there are so many people so much worse off than me - other days I feel so frustrated seeing all the things that should be done, and that I enjoy doing, left! I didn't think that there was anything that could beat me - was milking our house cow 6 hours after having my second son with no ill effects! She wouldn't let anyone else milk her so had to! Now it is a struggle to walk my dog for 1/2 hour. But then some people on this site would be grateful to be able to do even that, so mustn't moan! What really gets me down is that at 73, by the time this beastly illness has run it's course, I shall be that much older (I have only had it for 5 months), and time will have passed that could have been spent doing the things I enjoyed. Sorry for the rant, but once I started couldn't stop!