split dose at 5 1/2 mg

[Twopies]

My doctor suggested I try split dose—4 mg in the morning, 1 1/2 late in day—because I’m so spent around 5:00 pm. I thought I read on this forum that when you got to 5 mg., you aren’t supposed to do split dose; I’m assuming 5 1/2 mg is close enough to qualify? Thoughts?

[PMRpro Ambassador]

Late or lateR in the day?

There is no specific dose where splitting isn't advised. There is some thought that once you get to the realms of adrenal function returning, splitting so you are taking some pred late in the day might mean there is too much pred in the system at midnight - a low level of steroid at midnight is the trigger for production of cortisol in the early morning. Taking pred late evening is worse in that sense though. I assume you are taking the 1 1/2mg about 3-ish if it is to improve a late afternoon slump?

[Twopies in reply to PMRpro]

well, I’ve been taking it around 5ish, so guess I’ll switch to 3 pm. Thanks as always!

[PMRpro Ambassador in reply to Twopies]

If the slump is at 5pm - the pred takes some time to get there!

[Mayadill in reply to PMRpro]

Right now at 1 in the morning, when I'm about to take 6 mg, I've taken 2 mg of Pred in the last 24 hours and assume the level was low at midnight if not minimum which meshes nicely with anyway starting to feel sleep is due, so another reason for the early hours dose?

At the start it wrecked sleep but I hung on in there because the following day was so good and my body seems to have adjusted and I sleep normally.

[PMRpro Ambassador in reply to Mayadill]

It is pretty much the ideal time - it can be a pain though! There is a coated version you take at 10pm after/with food to create the right conditions for it to break down at 2am. It was developed and approved in the UK for use in RA to mitigate morning symptoms but approval was withdrawn a few years ago - it is more expensive, need one say more! I get it here in Italy. But then, I get Actemra here too.

[Mayadill in reply to PMRpro]

Indigestion was also an issue at the start. Again not now, somewhat as though my body had scratched its head, oh that's what you're doing, OK, I can go along with that.

amazon.co.uk/dp/B0B63WPHXC?...

But this also! Having taken my Pred I nod off semi-upright with a pillow by my side, naturally slither down and semi-consciously grope for pillow and adjust position and awake after deep sleep head on pillow. Revolutionizes reading in bed too, no more faffing around with cushions and pillows. Yes, it's huge, big enough to rest head against while sitting upright, without that funny detachable bit at the top. if that's a neck roll must have been designed by someone very tall.

[Twopies]

what an amazing journey! I like your “what works for you”; I’m going to try and see what happens. I’ve tried split dose 3-4 times before, but never the second dose at 3:00 pm so worth another try.

[piglette]

If you are anything like me it is your adrenal glands, I became quite zombie like at 5mg. Your doctor should be aware that the adrenals have to start waking up at that sort of dose and warned you of possible ‘strange’ symptoms.

[Twopies in reply to piglette]

thanks. But I have been on 6ish-5ish for so long I can’t remember. Can’t get lower, have flare ups. So my zombie 5:00 pm state has been going on for quite a while now, I’m going into my 7th year of pmr. My last attempt to get to 5 did not end well, so now I’m back at 5 1/2. Add in the muscle wasting to complicate matters (I just started physio for that).

[Twopies]

interesting that you mention pain—I’ve never been pain free on pred, even at the starting dose of 20 mg. My most recent try to get to 5 mg from 5 1/2 using dsns method increased the pain steadily, plus I was growing even weaker. Didn’t want to chance getting gca, so I did a short prednisone blast and ended back up at 5 1/2 where I guess I’ll stay for a while longer. The problem is, like so many others on here, I have other health problems besides pmr. Just started physio for my muscle wasting, fingers crossed it helps in the long run.

[Twopies]

oh geez, I’m gonna pretend I didn’t read this as I have Fuchs dystrophy and eventually will need a corneal transplant. For now I’m just gonna go slow and steady for awhile and then see if I can get down to 5 again. my gp who manages my pmr did mention steroid myopathy (ok, I mentioned it, he didn’t disagree) so I’m hoping hoping hoping that slow and steady physio can help.

[Alice70]

Thank you twopies I'm only on 2mgs consultant told to drop these every two weeks ,but I'm going to half them ,I have a good pill cutter which will do this if I'm careful

[PMRpro Ambassador in reply to Alice70]

No, no, no - the lower the slower!!! It isn't just the PMR/GCA - too many doctors forget the adrenal function side. It takes time to get up to speed.

[Donna5658]

What kind of test was ordered to check cortisol? What number is considered sufficient to be considered back to normal production? Thanks!

[Donna5658]

Thank you so much for taking the time to give me this comprehensive reply! It is extremely helpful.