Speedy taper after relapse - safe?

[Optim11]

I recently experienced my first GCA/PMR flare about 10 weeks after having reached zero pred. So, either went too fast, or too far or both. Rheumy has now prescribed 40mg x 12 days, then a swift, 12-day taper back to zero. I'm still on weekly Actemra. My symptoms have cleared on the 40mg, but I'm wondering if anyone has insights regarding this proposed pace of pred reduction here. Is the taper for a relapse approached differently than the original illness? Many thanks,

[DorsetLady PMRGCAuk volunteer]

Well it’s probably not what we would have recommended - but it’s what your Rheumy has decided.

However not sure a return to zero is a good idea… as we said in previous post your first attempt at reducing within a year wasn’t very successful, not sure this one will be either. Would have preferred seeing you being prescribed some Pred after getting things back under control rather reducing down to zero.

Usual advice on a flare as per most guidelines is to return to previous dose -or last dose your illness was controlled… but as you reduced so quickly it’s probably impossible to ascertained what that dose was. Hence the return to 40mg.

What we usually recommend on here with a flare, is to increase dose for 2 weeks by a relatively small dose, get symptoms under control and then return to dose just above the one that caused the issue, but that’s not going to work in your case.

So you just have to see how things pan out.

[SnazzyD]

To my logic, it doesn’t make sense. The flare happened on Actemra, therefore it isn’t covering all types of inflammation for you, as it doesn’t always. A flare occurs when the inflammation is more than whatever medication can counteract. Pred is known to not affect the actual autoimmune aspect of PMR, so what is supposed to have happened in this short time such that a zip back zero is going to be ok? What is their working assumption that makes them think it will be effective?

[Optim11 in reply to SnazzyD]

Their logic is, blast the accumulated inflammation with a relatively high dose, 40mg, then deal with finding the minimally effective dose. I've been advised to watch symptoms carefully. When I asked whether that brief timespan would provide enough room for symptoms to emerge if they're going to, they said that recurrences/relapses (ie, return of symptoms after at least 1 month off pred) typically show up quicker after each drop, and are often less severe in intensity than in the original illness. If symptoms appear they will adjust my pred dose, extend the time there, and possibly add another steroid-sparing agent.

[DorsetLady PMRGCAuk volunteer in reply to Optim11]

I can understand where they are coming from, but not sure it’s the best way to treat - and certainly not the most comfortable for you.

But what do we, as patients or ex-patients as both  SnazzyD and I are, know about it..

Wishing you good luck..

[SnazzyD in reply to Optim11]

It’s the lack of any finesse that bothers me and you’re the one having to live it.

[Optim11 in reply to SnazzyD]

Thank you. So taper plan for a relapse ideally follows the taper for a flare, ie slow & tiny steps....ugh, I'm going to call them. I know they really want me off pred, have had very large cumulative dose and am showing the effects.

[DorsetLady PMRGCAuk volunteer in reply to Optim11]

What effects?

[Optim11 in reply to DorsetLady]

Cataract formation, pred-induced high cholesterol, osteoporosis.....

[DorsetLady PMRGCAuk volunteer in reply to Optim11]

Cataracts may not worsen. and raised cholesterol usually reduces as the Pred is reduced. And do you know you have osteoporosis-or is that an assumption by doctors?

Both SnazzyD and I have been on high doses -and it’s not always as bad as some doctors tell you it’s going to be.

[Optim11 in reply to DorsetLady]

Thank you, that is really helpful perspective especially if my body needs the pred!! Pre-diagnosis cholesterol was low. Osteoporosis spine, osteopenia hip but I'm doing everything I can there short of AA. And if my risk truly warrants it I'd take the AA. Repeat DEXA in August will decide. Really appreciate your help.

[SnazzyD in reply to Optim11]

It might be worth considering some bone meds given you are osteoporotic but I guess the next scan will tell. My cataracts came suddenly but didn’t progress and I lost 3-3.3% bone mass over 3.5 years having started on 60mg. Some people’s bone mass doesn’t really change. Cholesterol didn’t really do much and my blood sugars were pretty good with diet control.

I always argued with them that a slow (slower than they wanted) reduction that was successful and didn’t require increase was better in the long term than having to keep going up because of going too fast.

[Optim11 in reply to SnazzyD]

I can understand that - fortunately my care team is quite receptive and collaborative so I'm going to propose exactly that. It sounds much more rational (and as you point out, easier for me to bear!). Thank you again for taking time to share your thoughts.