Another Pred journey

[Sunny1947]

I have been 5 years on Pred and 3 years on Actemra

A bit of up’s and downs but did very well with no side effects ( except bone loss) Lately got to 3 and poof back to square one again after major flare. Up to 20 mg with a probable 2 year tapering schedule. Probably same thing will happen again below 5 mg.. but happy to feel well at this juncture . I am 76 years old and will say I will probably stay on this till I pass. Bones be damned😀.I am very active which helps with bone loss and scoot around full of pep most days .So if you are very senior and on Pred and feel well just go with it . My goal is to get as low as possible and stay there ad infinitum

[PMRpro Ambassador]

Is this a disease activity flare - or is it the fact you have overshot the pred dose you need? Whilst Actemra does a really good job for the inflammation caused by IL-6, there are other underlying mechanisms in PMR and GCA which are found in half of patients and that means even on Actemra they cannot get off pred entirely because Actemra is very specific in its action and does nothing against the other inflammation, you need pred for that,

I think it is quite likely that you didn't really need to go back to 20mg - it is a mistake many doctors make and means patients are exposed to more pred than they really need. Our recommendation for a flare due to overshooting when you were fine at very slightly higher doses is to add 5mg to the dose where you flared for up to 2 weeks before dropping back to the last dose where you were really well if the increase has worked. If it didn't, then it is fair enough to go even higher if it is really needed but you may be saved that.

In your case, I would have said 10mg was a good dose to try. You may have overshot sooner than 3mg but the flare is probably due to the dose having been slightly too low and the ongoing disease activity has led to inflammation building up to a level that causes symptoms - our dripping tap of inflammation fills the bucket and it overflows sooner or later. I think it is worth a try - and might save you a lot of pred and save another 2 years of taper,

[SheffieldJane]

Your plan sounds pretty sensible to me. Keep an open mind though, you might live to be 100. 😃