Would anyone know about reducing preds

[notnice]

I was diagnosed with GCA a couple of months ago and had a relapse going down from 25mg to 20mg so my rhumie put me back on 25mg for two weeks then 20mg for four weeks then reduce by 2.5mg every four weeks, does anyone know if there would be any reason why he did not reduce by 2.5mg after the two weeks on 25mg

[Celtic PMRGCAuk volunteer]

No reason, apart from that is probably the routine he always follows! It might work for some but not for others. They try to get the patient down to as low a dose as possible to reduce the possible side effects whilst still controlling the inflammation. The smaller the drop, the easier it is to see at which dose the inflammation is creeping back - reducing from 25 to 22.5 would have been less of a shock for the body and probably proved more successful. I'm surprised that even though he advised you to return to 25, he repeated the same reduction second time around! However, hopefully it has proved successful this time and at least he is now recommending smaller reductions from 20mg.

[notnice in reply to Celtic]

Thank you for your reply, yes I thought it strange the he followed the same route. I will be going down to 20mg from tomorrow but as I have some spare preds was going to do the first week reducing by 2.5mg, or every other day, then go to 20mg not too sure if I should.

I am not sure if my rhumy has seen GCA in anyone before because when I went to see him the first time he said "there is this thing called temple arteritis".

[Celtic PMRGCAuk volunteer in reply to notnice]

As you haven't gone to 20mg yet, if it was me, I would definitely only go to 22.5 for at least a week, preferably two, in the first instance, rather than risk the same drop as before and possibly another flare.

[notnice in reply to Celtic]

Thank you very much for that I think that is what I will do, after reading about other people reducing I also thought of going to 22.5mg and 20mg on alternate days but 22.5mg for a week or two sounds better.

[PMRpro Ambassador]

I'll repeat the mantra: no drop should be more than 10% of the current dose. And even that is far too much for many patients. Here

healthunlocked.com/pmrgcauk...

you will find a slow reduction plan which you can actually use for 2.5mg drops but it is spreading it over a few weeks. It has been approved by a few rheumies and is being looked at by one of the research groups in the UK. A very similar one is in use by a rheumy in the north of England. In PMR and at lower doses in GCA we have suggested 1mg drops for some time - even in combination with this very slow reduction plan.

Going slowly like this also reduces the shock to the system of having its daily fix of pred taken away so that the problem of "steroid withdrawal" is also minimised.

And while it looks slow - it is still slower than reducing in a bigger step, failing and having to go back up again.

[notnice in reply to PMRpro]

Thank you for that, I am still under the hospital and have a follow check in November so I should be a bit carefull as I should be on 10mg by the time I see my Ruhmie. I will print your reply and show it to him when I go as although he knew about GCA I do not think he has seen anyone with it as yet, when he first saw me he said "there is this think called temple arteritis".

[piglette in reply to notnice]

I do hope you can get down to 10mg by November, but if you have problems do stop the reduction and don't feel that 10mg is a magic number you must reach before seeing your rheumie again. If you try to decrease and have problems you will only have to increase again, so it may take even longer and so there is no advantage.

[notnice in reply to piglette]

Thanks for that yes everyone so far have suggested a slow reduction, but how can you, as the patient, tell a doctor. I thought I had to reduce as my rhumie suggests, (my rhumie wrote to my doctor telling him the reduction programme) so on that basis my doctor would supply me with all the preds I need? My rhumie did say I could phone him if I was unsure about the reduction at any time but I think he ment if I had a flare up and I did which was when he changed the reduction.

[piglette in reply to notnice]

In all fairness to rheumies I think they probably go for the ultimate reduction they would like to see. They cannot be sure that will necessarily work for a particular patient, but there is no harm in hoping. If someone has a flare up they will need to up the pred and rheumies probably realise that.

[notnice in reply to piglette]

Yes thank you for that.