Not sure if increased pain is due to dosage or timing…

[Tribie]

I wrote recently about tapering on a split dose and received excellent advice re how to taper and also changing the timing of my second dose as I was experiencing disturbed sleep. I had focused on reducing my later dose (going from 10mgs to 2 mgs over several months) instead of alternating between am and pm doses, have stayed at 2 mgs for 5 weeks (usually 3-4 weeks) due to slight pain in sacrum and thighs which has increased over last few days. I changed the time of my pm dose from 4-5pm to 3 pm 10 days ago and am sleeping better, but am now wondering whether the increased pain is due to the dosage or the timing! Its so hard to work out what is happening - when the pain started originally it felt like sciatica but has now segued into a more generalised pain on both sides, much as it was before I started on steroids. I feel pretty sure that this is PMR pain, am thinking I will try increasing my pm dose to 3 mgs but continue to take it at 3pm. Any ideas? Does this seem reasonable? Would welcome any advice/opinions. Many thanks in advance, I hope this isn’t too confused…

[DorsetLady PMRGCAuk volunteer]

Your suggestion does sound a good first option..try it and see if there is an improvement. Doubt the timing is a major factor- probably just a tad too low on Pred.

[Tribie in reply to DorsetLady]

Thanks DL, it’s nice to have confirmation that it’s a reasonable thing to do 🙂

[DorsetLady PMRGCAuk volunteer in reply to Tribie]

Hope it works… but if it doesn’t you may need a bit more, but try that initially.

[Tribie in reply to DorsetLady]

Many thanks, I’ll see how I go.

[DorsetLady PMRGCAuk volunteer in reply to Tribie]

Just seen your question to PMRpro re how long before tapering - no rush… make sure you are okay, really okay before you step down. You have to listen to your body, and follow that - not the calendar…

[PMRpro Ambassador]

I doubt timing is the reason - far more likely that your total pred dose isn't quite enough to manage all the inflammation created each morning. What isn't managed by the pred builds up like a dripping tap fills a bucket and will, eventually, overflow. You can't cheat PMR - you need enough pred or it bites back.

[Tribie in reply to PMRpro]

Ok thanks for this PMR, I’ll go ahead then with increasing the dose for a few days and next time I taper it’ll be the morning dose. If the 3mgs does the trick how long do you think I should wait before tapering my am dose? It’s been 5 weeks since my last taper.

[PMRpro Ambassador in reply to Tribie]

You aren't tapering relentlessly to zero - you are tapering in a process called titration to find the lowest effective dose, the lowest dose that gives the same result as the starting dose did. You do that by overshooting a bit - identifying the dose that is not quite enough. Having done that, you quickly return to the last dose that worked well. That is YOUR ideal dose for the moment. It doesn't mean you won't get lower, just not yet.

The underlying disease activity is still high enough to need that dose. Usually it very slowly fades and you can get to a lower dose over time but it may take months - and if you try to go too low you will have a flare of symptoms again. If you try to force it you will flare, if you do it repeatedly you are likely to find it ever harder to get symptoms under control. This is the long game, patience is essential to get the balance between disease activity and pred dose right. Everyone thinks they will be different, they will buck the trend, other rules will apply to them. You won't - if you listen to the members who have been there and struggled, you will have a lot more comfortable journey and probably take a lot less pred in the long run!!!

[Tribie in reply to PMRpro]

Just a quick update, increasing to 3 mgs pm seems to have done the trick so will leave it there for a while - how long should I wait before starting to taper the am dose?

[PMRpro Ambassador in reply to Tribie]

A few months maybe? This is a low dose, it is a dose at which your adrenal function needs to wake up and start producing some top-up cortisol to ensure your body functions well. Sticking at 3mg for a few months will encourage that. Prof Rod Hughes, who we frequently recommend as a very good PMR doctor, actually likes to keep patients at 5mg for up to 9 months to allow that process and find the rest of the taper often goes better. You have managed to get below that without a problem - which is a great place to be. But obviously your PMR is still there, which isn't surprising at this stage.

[Tribie in reply to PMRpro]

Sorry I should have been clearer, I am still taking 10mgs in the morning, so 13 daily, not so low after all! I increased the pm dose to 3mgs a couple of days ago, as I was having hip and thigh pain in the morning. Previous to this I was on 2mgs pm for 5 weeks, with gradually increasing pain in the last week. My question was about starting to taper the am dose to 9mgs - had planned to do this in a few days but having had to increase the pm dose should I wait longer to see if that is sufficient?

[PMRpro Ambassador in reply to Tribie]

Oh sorry - should have checked!!!

In that case, give it at least a couple of weeks, 3 maybe. And then try a very ginger 1/2mg before giving that a good month to be sure that is OK. YOu really do need to be sure you are stable after any change in dose and as you already have seen, it can take a month before you really feel it.

It may sound slow but it isn't when it works!

[Tribie in reply to PMRpro]

Ok thank you, it’s so good to have your advice… yes it does feel slow but I’d rather that than have a flare - trying my best to avoid that 🙂