I was diagnosed with GCA in February 2015, started on 60 mg Prednisolone and am now down to 5mg. I've had various 'flares' over the past months resulting in increase in Pred for short periods of time. Now that I'm on 5mg I am desperately tired with lots of aches and pains, though not diagnosed with PMR. My question is....... is my reduction too fast. I don't see the Rhuemy till April and feel like I'm a nuisance when I go to the GP.

2 Replies

  • If you were dx'd with GCA in February that is a very fast reduction and you have been very lucky to get so low.

    However - even a short time on very high doses of pred will suppress adrenal function and your body has to learn to make it properly again once you get below about 10mg. For some people it is nearer 10mg, others a bit lower, but 7.5mg is felt to be the "physiological dose", what the body would normally produce. It produces it all through the day - so if the adrenal glands aren't responding you aren't getting the boosts of cortisol you would have in response to various stressors. The early morning dose is there from the tablet - the rest aren't. So you tend to feel tired, especially when there are things like infections, emotional responses are required - big events to get through.

    On the forums we tend to push the concept of slow reductions for that reason - above all below 10mg. 10mg is often a sticking point, 7.5mg and 5mg too. If you go slowly your body has a better chance of keeping up with the adjustment - and slow isn't just small steps but also staying at each new dose for a month or two at least before moving the goalposts again. Some people need even longer. One top rheumatologist in the PMR/GCA field in the UK likes to keep his patients on 5mg for up to 9 months to let the body catch up and also to be sure they haven't overshot the mark so far.

    You may have aches and pains that are PMR - it is also sometimes a symptom of GCA but the very high doses used in GCA effectively keep it under control. Until now the dose may have been enough to do that, many of us manage with doses of 6 or 7mg, I've been on 5mg for a couple of years, lower doesn't work for me. So it may only be now that the PMR type aches have appeared.

    When did you last feel well? If it is just a couple of mg higher perhaps you would be better staying there until April - under 7.5mg is a low dose with few longterm consequences and compared with what most of us have taken over the years you still have a very low total pred dose. Four months at that level is not a lot.

  • Thank you so much for your reply. I'm really pleased to read your advice and may well increase to 7.5mg and will be in touch with my rheumatologist. Thank you again.

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