Follow up question about taper

[Hwle]

hi All. I am in my third full day of taper from 15 to 10mg. One thing that has changed is how my new dr told me to take my pred. My last RHEUMy told me to split the does. 5mg in am and 10mg at lunch. Now I am taking 10mg all at breakfast. I am feeling some slight achiness in the am and after about 3 hours of taking am dose I feel almost 100% pain free. Should I go back to a split dose to help with the am stiffness and achiness?

[piglette]

Ideally you are better off with one dose a day, but some people find that they need to split the dose as their body ‘runs out’ of the steroid boost in less than 24 hours, so they split the dose as it works better for them.

[DorsetLady PMRGCAuk volunteer]

Do you mean one step from 15mg to 10mg? If so, too big a reduction . Usual is 15to 12.5 and that too much for some.

Thing you issue is too low a dose - do I’d be inclined to go back to 15 and try it more slowly next time around

Just for info, if you do split dose advice is 2/3rd am, 1/3rd pm - not as Rheumy suggested.

[PMRpro Ambassador]

Do you really mean dropping from 15 to 10mg in a single step? And straight from every day 15 to every day 10mg? If so, that is very likely to be behind the return of symptoms. I think your current problems are most likely to be you have gone to too low a dose and too fast.

That is how you are told to taper in other uses of steroids where steroids are used for a short time to combat acute inflammation and then you stop. But that isn't how pred is used in PMR. You start with a dose that is likely to be more than you will need to clear out the accumulated inflammation. Then you SLOWLY taper the daily dose of pred until you identify the lowest effective dose for you at the moment. PMR and GCA are chronic illnesses that rarely last much less than 2 years before the underlying autoimmune cause of the inflammation burns out and goes into remission. For almost half, it can be more than 6 years before we get off pred. In the immediate future, half of patients take more than 18 months to get to 5mg.

If you get a better result with splitting the dose, then that is often used, However, it is much more usual to take 2/3 of the daily dose first thing to get a good handle on the daily shedding of inflammatory substances at about 4am, the other 1/3 a bit later in the day to extend the antiinflammatory effect of the pred to 24 hours and the next morning dose, But if you can take the pred all in a single dose in the morning and the effect holds until the next morning that is better for a few reasons. But everyone is a bit different.

[LemonZest11 in reply to PMRpro]

What a brilliant response 👏

[Bcol]

From very early on I took all my Pred around 02:00, which removed all morning aches and pains and happily lasted me the full day. Everything else already very clearly said in the other posts.

[Hwle]

After giving it a week, I realized my achiness wasn’t going away. I gave my dr a call - decided to go back to my original rheumy and told her what was going on. She said I am clearly sensitive to a drop in pred so she upped me back to 15mg. 10 at bf and 5 at lunch. She said as long as I am able to handle sleeping well overnight then I could stick with lunch split. She said if you can then you get more bang for your buck with the split dose bc it lasts longer overnight since - and I was glad to hear her day- that the inflammation will kick up around 2am. Seems to me my dr knows what she’s talking about after doing so much reading in this blog I knew what to listen for!

She told me to stick with 15 for a week and then go to alternating 10mg a day and then 15mg the next until I see her at the end of the month. But I forgot to ask about the 10mg and if I should split dose. I going to think I should. What do you all think? Thanks for your help. It’s hard though bc I always second guessing my dr and just want to feel confident in my care.

[DorsetLady PMRGCAuk volunteer in reply to Hwle]

Sorry don't agree with the 15mg/10mg alternate day approach. Two reasons - think the alternate day is harder on body at whatever dose [although some Rheumies seem to like it, not sure they would be so keen if it were them ] and the difference in dose is still too much.

You can but try her way, but I wouldn't be surprised if you end up in similar situation. Which is of no help to you.

She said I am clearly sensitive to a drop in pred

Think anyone would be "sensitive" to that drop in Pred!

[PMRpro Ambassador in reply to Hwle]

Sensitive to a 5mg drop at once when you have PMR? I bet there are very few who could do it!!!!

You can get a pill cutter - cut the 5mg tablet and take 12.5mg every day, far far easier on the body!!!

[Hwle]

and I should say that h felt much better on day two of tripping my dosage to 15mg. I am now feeling as I did before the taper.

[DorsetLady PMRGCAuk volunteer in reply to Hwle]

That's one good thing then 😊

[Hwle]

So what would you suggest if not alternating? Should I try the slow taper that is suggested in your FAQ's?

[DorsetLady PMRGCAuk volunteer in reply to Hwle]

Can try that - but many find that reducing 1mg a time - staying at that dose for 3-4 weeks is much easier., and much less likely to cause a flare - which inevitably means a higher cumulative dose in the long term, and probably make the journey to zero longer as well.

Your Rheumy may not be happy with that, but all the guidelines state-

Recommendation 4: The panel strongly recommends individualizing dose-tapering schedules, based on regular monitoring of patient disease activity, laboratory markers and adverse events.