Breaking free?

[skylark22]

I've been taking prednisolone for my PMR for 5.5 years, gradually tapering and raising again three times during that period (but not for over 18 months) for moderate flare-ups. I'm now down to 1mg every other day. The only remaining symptoms are mild stiffness in my legs on getting up after sitting for anything more than 15 minutes - and this stiffness disappears after a few steps.

I know I'm very lucky to have got this far, but it's slightly scary... I could happily live with this mild and residual stiffness, but it's almost as if the PMR is telling me that it's still there and waiting to get its own back! Sadly, I have little faith in my rheumatologist (long story), who just told me to 'reduce the dose to zero over time', and I just want to know if others who've reached this point have any advice, or whether anyone else in a similar position has successfully come off the steroid completely? Many thanks.

[PMRpro Ambassador]

Lots of people have go off pred entirely - just most of them aren't here, they are off living life.

Low adrenal function can also cause aches and stiffness and that can last for some months after getting off pred altogether.

I would say jut keep tapering very very slowly - and remember that 1/2mg a day can be enough to keep PMR at bay so don't hurry that final stage.

1mg alternate days - so either increase the days between the dose days or try 1/2mg days first and then add the days between. But there is absolutely no hurry and the slower you do it. the easier it will be eventually to take the plunge to zero.

[skylark22 in reply to PMRpro]

Thank you - and I entirely take your point that those who do 'break free' of the steroids probably don't remain on this forum. I'd hope to stick around for a while at least, even if I do manage to stop taking the meds. I might just be able to help others going through this tough old journey.🙂

[PMRpro Ambassador in reply to skylark22]

Exactly - and we wish people would hang around and give a hand

[DorsetLady PMRGCAuk volunteer]

Many have got to zero, but as PMRpro has said, they have sailed off into the wide blue yonder.

I had GCA (not PMR), and have remained on here (although thank you Pp, I do have a life outside the forum 😏).

As yes, it may by scary, but the only way you will know your illness has gone into remission is to get to zero- and hope no symptoms return.

I would say, that your 1mg one day/zero the next may not be the best way forward...I reduced 1mg down to 0.5mg, then 0.5mg down to zero using a slow tapering plan...my opinion that's an easier way. But whatever way you go, there is no rush....

Plus you must remember the residual/stiffness may by PMR, but it may not, after all you are 5 years older, so may just be age related.

[skylark22 in reply to DorsetLady]

I'm grateful for both replies - though both you and PMRPro mention taking 0.5mg per day. However, the lowest dose tablet is 1mg, and it would seem far too tiny to cut in two without losing some of it in dust! The only advice I've had from the hospital is to alternate one tablet day with one no-tablet day. Have you come across any other solution - maybe there's a liquid medicine alternative?

Thanks again for your support and guidance.

[DorsetLady PMRGCAuk volunteer in reply to skylark22]

no problem to cut pulls -. Pill cutters very cheap -couple of £s from all pharmacies, online and someone larger supermarkets -and if not exact, no great shakes 😊

[skylark22 in reply to DorsetLady]

Brilliant! I'll get one today and give it a try. Thanks so much!

[DorsetLady PMRGCAuk volunteer in reply to skylark22]

this is one so bought years ago -still use it occasionally for other meds -.

PC

[skylark22 in reply to DorsetLady]

Am off to the pharmacy right now! Many thanks, DorsetLady.

[PMRpro Ambassador in reply to skylark22]

They cut OK - and accuracy is not necessary, it just needs to be less than the higher dose and more than the lower dose as you are tapering.

[skylark22 in reply to PMRpro]

Yes - great advice. Thanks so much!

[Sharitone in reply to skylark22]

I have the same pill cutter as DL, and I find it quite easy to cut the tablets (2.5mg) into quarters! I imagine the 1mg tablets are equally easy to cut. I may lose a micro-crumb here or there, but not enough to be significant, seeing as the whole point is reducing.