PMRGCAuk
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Steroid drop

Hi there,

I've been on 20mg steroids for a month for PMR and yesterday dropped to 17.5mg. My shoulders are feeling quite stiff today and I wondered if this is normal and if it takes a while to adjust to the new dose or if I wasn't quite ready to reduce yet. I started on 40mg early June, should have been 20 but my doc didn't get the report from rheumatologist in time. Once she did I reduced down to 20 in 5mg drops over a few weeks with no setbacks so quite surprised to feel stiffness with this 2.5mg drop. Hopefully it's just that I'm adjusting to the new dose but just wondered if it's normal to encounter discomfort with a new drop sometimes and not others.

6 Replies
oldestnewest

At some point you get to a stage where the drop is too big - down to 20mg you have been well above a usual starting dose for PMR so probably didn't notice it as much.

If it is steroid withdrawal then it will improve over the next few days - if it doesn't, and especially if it seems to be getting worse, then go back to 20mg and start over again, preferably with a bit smaller reduction. The golden rule is not more than 10% of your current dose - and even that is too much for some.

And do try to avoid activities that make it worse ;-)

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Thank you. If it does get worse and I go back to 20, how long should I stay on 20 before reducing by 10%?

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When I was first starting my taper and got to the point when pain began to return, in my case it was increasing pain over a period of about ten days so definitely a bit more than pred withdrawal, I waited about three weeks at the dose that worked then started the Dead Slow Nearly Stop method of tapering. I've been able to use this method, occasionally tweaking it for my own needs, to get from 10mg to, currently, 1.5. It's taken about two years so far. After a while you get used to how your body responds to pred, to activity, to stress. It's not all PMR as such, although always wise to err on the side of caution when tapering.

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Once your symptoms have gone is usually enough. The Dead Slow approach Heron mentions is here:

healthunlocked.com/pmrgcauk...

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So back on 20mg until pain goes and then down to 18mg (10% drop) instead of 17.5 for a month? When does the dead slow bit kick in?

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Any time you like. Originally it was developed for below 5mg - that last bit can be very hard for all sorts of reasons. Then we realised that it would help people who were struggling at the beginning - the very first was a lady who'd been told to reduce in big steps and after a flare she struggled even 2.5mg at a time and above 20mg. We suggested she tried 1mg at a time - pretty much unheard of then - and she steadily reduced to below 10mg before any further problem arose. Where she had trouble - we suggested alternating old/new for a while. And then DSNS was born - there were 2 or 3 versions on the go as others had worked out their own idea. If someone could reduce the way the doctor dictated that was fine - but when they flared and ended up in a yoyo pattern we said SLOWER. Over time it was realised that yes, it DID help...

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