Thoughts on alternate day dosage

[HamishPMR]

I have PMR since 2018 but since have developed Vasculitis. As well as a 6-monthly infusion of Rituzimab I have been on a reducing regime of Prednisolone to 5mg daily. My consultant wants me to reduce to 5mg on alternate days. I would have thought 2.5mg daily would be more sensible. Thoughts please.

[DorsetLady PMRGCAuk volunteer]

As you probably know, “we” [you can guess who I mean] really don’t favour the alternative day approach- harder on the body..

You asked similar question previously- so do you mean he now wants you to take 5mg one day zero the next? Your statement is a bit confusing..

healthunlocked.com/pmrgcauk...

[HamishPMR in reply to DorsetLady]

Sorry, yes my Vasculitis consultant want me to reduce to 5mg on alternate days. Again, thank you for your help.

[DorsetLady PMRGCAuk volunteer in reply to HamishPMR]

Then definitely not a good idea [in my book] - I’d go down the 2.5mg daily route - and good luck.

[HamishPMR in reply to DorsetLady]

Thank you Lady, you continue to help so many people. Thank you, Hamish.

[PMRpro Ambassador]

As I explained the last time you asked about this, the ADD approach is a commonly used regimen that seems to suppress adrenal function less so it would make sense for a patient just diagnosed with vasculitis, put on pred AND started on rituximab before tapering the pred immediately and where there is likely to be less adrenal suppression from the outset. On the other hand, you have been on pred for 6 years, there is bound to be a fair degree of adrenal suppression and I really don't know whether the ADD would help - you can only try I suppose. In terms of managing PMR/GCA, ADD is less successful as the inflammation builds up too quickly and symptoms return in the 48 hours between doses. How YOUR body responds to ADD is also an individual thing and many find it unsettling. It didn't bother me - so again, something you have to try for yourself to see how you get on now it isn't a PMR-thing and the rituximab and mycophenolate (was it?) are doing the heavy lifting rather than the pred.

[HamishPMR in reply to PMRpro]

Thank you once again, you are very helpful to this village idiot. Kindest Hamish.

[PMRpro Ambassador in reply to HamishPMR]

Village idiot - hardly!!!!! Maybe I'm just better practised in all the ins and outs!!!

[AtopicGuy in reply to PMRpro]

Since 99% of the prednisolone has left the blood within 24 hours, the steroid-free days must be quite a jolt to the adrenal glands. I presume the hope is that repeated jolts will ensure they wake up.

[PMRpro Ambassador in reply to AtopicGuy]

It isn't the time it takes to excrete the pred - it is the antiinflammatory effect which can last well beyond that and can be up to 36 hours or more. But it depends on the person - it can be as little as 12 hours - a far shorter time than the pred is present in the body.

[AtopicGuy in reply to PMRpro]

It is true that the immunological half-life is typically 24 hours. That means the immunosuppressive effect of prednisolone is down by about 75% by the end of Day 2. Whichever figure we take for the residual action - 1% or 25% - the signal to the adrenals to kick in comes through the blood.

[SusanEleven]

You remind me a little bit of me. I was diagnosed with PMR in 2016/17. I was diagnosed with GPA Vasculitis in 2023. My new rheumatologist thinks I may not have ever had PMR because it presents in much the same way as early vasculitis. I guess it’s possible I had both. But I was ANCA positive the entire time, which my previous rheumatologist pretty much ignored. I’m also on Rituximab infusions 2X yearly, infusion 4 end of month. Being weaned off prednisone after all these years. Down to 1mg now. I still follow the slow reduction plan of the wise people in this group, I wish you well in your journey!

[PMRpro Ambassador in reply to SusanEleven]

Any patient who is ANCA positive should be classified as NOT having anything on the PMRGCA spectrum (PGSD I think they have christened it), ANd any rheumy should know that.

[SusanEleven in reply to PMRpro]

I told my previous rheumy the diagnosis. She’s still sticking to her diagnosis. Blows my mind. I had clear lungs when I first became her patient. By the time I got my new doc I had “interstitial lung disease in the setting of vasculitis.”

[PMRpro Ambassador in reply to SusanEleven]

Says it all really doesn't it? And we are told, even by some patients, that "they are the experts" - but some of us have had our faith in THAT severely shaken.

[PoolePerson]

don’t think I can add much to this. My advice is always reduce at snails pace and alternate days doesn’t seem right to me.

[PaaDal91]

hi hamish

i do well w 2.5 mgs every other day since july. cheers

[mrtibbs22]

wish I could reply not well I'm so sorry