Reducing from 15 to 13.5 not so good

[3daysinjuly]

I’m fine up until around 4am and then it is always the wrists, hands and arms. I think I better go back to the split dose where I felt better. Can I just go back to taking 10 and 5 (or maybe 10 and 3.5)? I guess I can since my body will still be getting the same amount in a 24 hour period.

[PMRpro Ambassador]

You should be able to - only one way to find out!

[Daisychain12]

I wouldn't feel confident telling you what to do, but I did it. I had asked once before and told it was ok but he (rheumy) did talk about the pros and cons a lot and you should prob check with him/her. It helped me enormously. I find it terribly difficult to get under about 12 mgs. I am currently on 13mg so I totally get it. I wish you luck. Let us know how you go x

[3daysinjuly in reply to Daisychain12]

Thank you for your reply.

[Hindags]

When I was having problems in the morning, around the same time as you do. I was at 15mgs or so at the time. I started taking 5 mgs around 2am when I got up to pee. Most people here who do that also take some yogurt with the 2am dose. It made all the difference for me.

I didn't ask my Rheumy, just experimented and then told her. Maybe not the best patient, but I am who I am I suppose. My rheumy then prescribed Delayed Release Pred (Lodotra in UK, Rayos in US) so I didn't have to wake up in the middle of the night. I take it at 10pm and it releases into my system in time to deal with the early morning cytokine dumping that was causing my pain. Never have had morning pain again.,,

[3daysinjuly]

I’m happy that you found relief from the morning pain. Thank you for your idea.

[PMRCanada]

I’m still trying to nail down dose time to get to 9.5. Taking 10mg at 2am means pain free mornings, but aches that return around 6 or 7pm (sigh), as I don’t absorb all the pred dose therefore the dose doesn’t give me a full 24hrs of relief.

As soon as I start to taper to 9.5, the inflammation returns quicker, so I’ll stay on 10mg and experiment splitting the dose, 7mg at 2am and 3mg at 5pm, fingers crossed. When I tapered down from 15, I went down 1.25mg each drop (I only had 5mg pills that I cut into 4 pieces). So I went down 15, 13.75, 12.5, 11.25, then 10mg.

You are very fortunate to have acccess to the slow release pred in the states. As mentioned already, you take it at 10pm and don’t have to get up in the middle of the night.

Wishing you all the best as you experiment to find what works. It’s all a matter of experimentation with your symptoms being your guiding factor.

[PMRpro Ambassador in reply to PMRCanada]

Whether you absorb it all or not has little to do with having 24 hours relief - it is a different effect, that of how long the antiinflammatory effect lasts which can be anything from 12 to 36 hours. The amount you absorb influences the total dose you need - if you are a 50% person you might need to take almost twice as much as if you were a 90% person but the effect would last as long (or as short...). And delayed release is not slow release, it releases all at once, just the same as ordinary pred, but 4 hours later.

[PMRCanada in reply to PMRpro]

Thank you for that clarification.