Regarding pain when tapering?

[jsretaw]

I was diagnosed with PMR in Feb. and started 20 mg prednisone for about 5 weeks and on March 10th my Rheumy dropped me to 15 mg. He has me take my dose at bedtime (about 10:30 pm for me) to help with morning pain. When i was on 20 my pain was low perhaps a 1-2 on a 10 scale and mostly in my hands. After a few days on the 15 mg my pain began to get worse by the day in the evenings. I would say now at a 4 level in my knees, shoulders and pelvis along with my hands. My question is when tapering to a new level is it normal for the pain to get worse and if I stay on 15mg for a few more weeks should the pain level decrease?

My experience with the prednisone is that it starts helping a lot about 3-4 hours after I take the dose and I feel pretty good for about 16 hours and then it seems to wear off slowly for 3-4 hours. Is that a typical response?

I am also starting to get cramps at night in my thighs and hands.

Doc has me taking a multivitamin and glucosamine as well as a Calcium/vitamin D3 supplement. I just bought some Mag glycinate to try for the cramps.

I find this forum very helpful!

Thanks

John

[PMRpro Ambassador]

That is a BIG drop so soon after starting pred - you would probably have been better going via 17.5mg - a basic rule is the step down should not be more than 10% of the current dose but many people do manage 2.5 as far as 15mg. The fact that 20mg worked for the 24 hours suggests it was enough to clear out a lot of existing inflammation but the job wasn't finished - the 15mg isn't enough to do as well. The amount of inflammation tends to be greater in the first few months and a lot of doctors keep patients at the starting dose for 6 weeks and that works better than the official NICE idea of reducing to 10mg in 4 to 8 weeks which experience shows is far too fast for many patients. Shame they didn't ask us. But hey - what do patients know!

My opinion is that the symptoms and blood markers should be well controlled and low before the first reduction and the step should be small. The 24 hour bit can often be managed by splitting the dose - often 2/3 in the morning, the rest sufficiently later to carry the effect over to the time at which the next dose is due. Another basic rule is that you shouldn't feel worse pain-wise at the end of a reduction step than you did at the start. The pain level you achieve at the starting dose is a good guide to what you are looking to maintain as you reduce. Pain that starts soon after a drop and then improves is probably what is called steroid withdrawal rheumatism but if it takes a bit longer and them get worse, it is most likely symptoms flaring because the dose is too low to manage all the inflammation: pred cures nothing, it is a management strategy that combats the inflammation created each morning by the shedding of the inflammatory substances at about 4am. The actual disorder is unaffected and chugs along in the background - you have few symptoms as long as the pred dose is enough and you are not reducing relentlessly to zero, you are looking for the lowest dose that gives the same result as the starting dose.

[jsretaw in reply to PMRpro]

Thanks for this reply. Very Helpful.

[DorsetLady PMRGCAuk volunteer]

Ditto to PMRpro’s comments

[jsretaw in reply to DorsetLady]

Thanks

[DorsetLady PMRGCAuk volunteer in reply to jsretaw]

Bit more general info, may find useful -

healthunlocked.com/pmrgcauk...