Some help with Tapering please

[Brock11]

Finally convinced Rheumatologist its PMR as my ESR and CRP are normal. It seems it is possible in some people. However all the symptoms of PMR (my mother has had it for 20 years and cannot taper to zero). I am was on 15mg for 4 weeks and symptoms vanished almost over night. Brilliant. Instructed to reduce to 10mg for next 4 weeks. Day 3 on 10mg and symptoms back. Question - is this normal to get symptoms back so quick. Is 5mg drop too much (although compliant with NICE guidelines) or is it Predisolone withdrawal as have had mild headache for 3 days, aches, pains etc. Many thanks.

[cranberryt]

2.5mg drop might be better. Usually steroid withdrawal symptoms happen within the first 3-4 days and then disappear while a flare up shows up after a week or so. However, if at any point, your dose goes too low to handle the inflammation, your symptoms will return which it sounds like ehat might be joining on here. I would go up to 12.5 and see how you feel. You might have to go back to 15 and then try again at 12.5 instead of 10.

[TheMoaningViolet]

I reduced Prednisolone from 15mg to 12.5mg and this was very difficult. 12.5mg to 10mg was a lot easier. These are the only drops I did without an adjustment phase (10mg to 9mg, and all the way down to 7mg, I alternated doses for one week before staying on the lower dose for 4 weeks). Once I was at lower doses, I started following first DL then DSNS methods and reducing by 0.5mg. Sometimes I repeated some steps (especially when reducing from 5mg to 4.5mg and 3.3mg to 3mg (I am now at 2.5mg). I have so far managed to avoid a flare.

[DorsetLady PMRGCAuk volunteer]

Actually 15-10mg is not compliant with guidelines..,what's quoted is - 15-12.5-10mg...but many find that much too rapid. We always recommend that a reduction should be not more than 10% of current dose...so 15mg that would be 1.5mg... not 5mg that's 33%...

This post explains difference between SW and flare -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Unfortunately the NICE guidelines weren't drawn up by someone who knew anything about PMR! Though I didn't think even they were that precipitate!

This is a good basis to reducing - and it works:

rcpe.ac.uk/journal/issue/jo...

2.5mg at a time is better but there are plenty of people who can't manage even that. You aren't just reducing to zero - you are looking for the lowest effective dose that gives the same level of symptom relief as the starting dose. This tends to be higher at the start and will fall over time for most people. But you cannot rush it, especially below 10mg where reductions of more than 1mg per month are predictive of flares. A basic rule at any level is a reduction step shouldn't be more than 10% of the current dose. And if they try to tell you that is too slow - it isn't slow when it works and you don't end up going backwards. If you allow flares of symptoms to build up it can become increasingly difficult to reduce the next time and you end up taking more pred than if you had just carried on reducing slowly and carefully.

There is quite a bit about reducing in the FAQs - have a browse.

[Sharitone]

I've had several attempts to get below 15mg, without success. I used to look forward eagerly to the next reduction, but I would rather go down even by just 1mg at a time, or even stay where I am, than have all this 'yoyoing' again!

[alangg]

You don't say whether you are using a taper plan or doing a "cliff edge" drop which is prob too much for that reduction. A 'dead slow nearly stop' or DSNS taper makes it much easier for your body to get accustomed to the new dose.

[Brock11 in reply to alangg]

Thanks alangg and to everyone for all the posts. The Rheumatologist instantly agreed the drop was too much. I think it was a test to see if the symptoms came back as there are two factors which do not point to PMR (age and normal ESR) but suggested back to 15mg for one week then 2 weeks alternating 15/ 10 every other day. Having read DSNS on this forum (thanks), I am going to go off piste from his advice and just do slow alternating DSNS type reductions of 1mg over the next so many weeks and see what happens.....

[PMRpro Ambassador in reply to Brock11]

Can't see how old you are - over 50 is universally accepted but they also say repeatedly that doesn't mean you don't get it younger - just it is less likely, not impossible. And up to 20% of patients are said to have markers that remain in normal range - that doesn't mean they aren't raised for YOU. I do wish rheumies would accept that before these knee-jerk reactions of "it can't be ..."

[Theziggy]

I have been using the 'dead slow nearly stop' and have managed to get to 4 mg