its me again knackered as usual

[kingharold11]

I really don't know where to turn. I was told by my rheumy to stay at 5 mg until April but I can't see how I am ever going to reduce how I feel at the moment. I am totally exhausted most of the time. I don't have any pain anywhere, I haven't since I came off steroids this time last year then had to go back on because of a flare. The reason I came off steroids was to have a synacthan test to see if my adrenals were working they were then but I doubt they are now because I immediately had to go back on steroids. I thought I had a UTI last week so I took a urine sample to the doctors 11 days ago, they have not contacted me at all until last night when someone rang at 7.30 ( the surgery closes at 6pm} to arrange a telephone consultation on Monday as you can imagine I am worried as to what they want and also annoyrd at the way they have organised everything. Sorry for moaning

[PMRpro Ambassador]

If the synacthen test showed they were working - then they are working! What happens though is that the entire feedback setup takes a while to settle down (confirmed by an endocrinologist a few weeks ago, not just supposition). 5mg is below the amount the body needs and it's likely you simply haven't caught up yet. Since the dropping the pred effectively caused a flare you should really have had a couple of days at least at a bit higher dose to calm the inflammation down .

If they called you to arrange a telephone consultation I don't think there is much need to worry - if it was serious they wouldn't have waited until Monday. Or at least - they could expect a complaint if it turns out to be something they should have dealt with faster! If the urine culture had been positive or anything to worry about it wouldn't have taken 11 days to report - 5 days is plenty for them to grow bugs and they call if it is necessary.

But tell them you aren't happy - if you don't tell them, they won't change.

[kingharold11 in reply to PMRpro]

thanks I am going to give them what for