Tapering

[Caradomben]

Hi I I have tapered from 3mgs to 2mgs this past week . Now I’m having pain and stiffness in shoulders and neck . Dr says my inflammatory markers are fine . Any advice

[DorsetLady PMRGCAuk volunteer]

Bloods may be fine, but they do have a tendency to lag behind symptoms . Did the pains come on straight away (if so could be steroid withdrawal) and should disappear when body acclimatised to lower dose.

If they took 4-5 days to surface would say dose is too low. If that's the case then back to 3mg, get stabilised again and then reduce by 0.5mg a time and maybe use a slow taper -this is just one version -healthunlocked.com/pmrgcauk...

[Caradomben in reply to DorsetLady]

Thank you yeah seems to be getting worse as days go on.

[DorsetLady PMRGCAuk volunteer in reply to Caradomben]

Well that probably tells you it’s not enough Pred, if it were steroid withdrawal the opposite would happen.

[PMRpro Ambassador]

It's a bit soon to look at markers - they don't rise overnight.

Did you reduce from 3 to 2 in the space of a week? No wonder you feel a bit stiff! It is recommended that no reduction step should be more than 10% of the current dose - that was 33%! Half a mg spread over a few weeks at least is far less traumatic for your body.

[Caradomben in reply to PMRpro]

Thanks think I’ll go as Dorset lady suggests go back to 3 for a week or so . Got a telephone appointment with my rheumatologist but not till 11 th may so stick with 3 to see what she suggests x

[PMRpro Ambassador in reply to Caradomben]

As DL says - if it worsening that is less likely to be steroid withdrawal and could well be that the dose is just a smidgeon too low.

[DorsetLady PMRGCAuk volunteer in reply to Caradomben]

Good idea....and maybe suggest 0.5mg steps and slower tapering regime. People assume the reductions at lower doses are going to be easy - as the song goes “tain’t necessarily so”!...the lower you get invariably the bigger the reduction in percentage terms....

[PMRpro Ambassador in reply to DorsetLady]

Not to mention if you aren't going to get to zero pred first time round - you are getting closer to the dose you DO want ...

[SusanEleven in reply to PMRpro]

My rheumatologist told me her rough estimate is that about one third of her PMR patients get to zero. One third settle in at a low daily dose of steroids. And one third get a change in diagnosis.

[PMRpro Ambassador in reply to SusanEleven]

At last a realistic rheumy!!!

[Rugger]

I would reduce by only 0.5mg at these low doses and take a month or more to do so, using the DSNS taper or similar. It could be that 2.5mg would have been alright, but you have by-passed that dose. Good luck!

[SusanEleven]

Shoulder and neck stiffness is always my body’s first indication I’ve gone too low. My blood test showed my inflammation level was normal (third time in 5 years; my rheumatologist runs extensive bloodwork 3x yearly) but my neck and shoulders don’t lie. 😊 As others have said, bloods tend to lag behind symptoms.