Schedule

[Maggieart]

After a couple of years at 4.5 mg, the pain came back. I finally relented and went to my rheumatologist. This has been my schedule:

7 days at 15 mg (felt great - no pain - got my life back)

4 days at 12.5 mg (still feeling good)

1 day at 12

3 days at 10 (began feeling a little pain)

1 day at 9.5 (pain increasing)

2 days at 9

2 days at 10 (pain) supplementing with Tylenol Arthritis, but still hurting

Should I give 10 a couple more days or increase?

(I still don't understand why, after so long at 4.5, I am now not even feeling relief at 10.) So frustrating. What did I do wrong?

Thank you.

[DorsetLady PMRGCAuk volunteer]

You probably do need longer at 10mg - in fact usual suggestion would be 7-10 days of higher dose, maybe up to 14 days [and usually adding 5mg, not 10mg] in line with normal flare advice. See link -

Unfortunately, you probably needed longer at 15mg… and when you say - got my life back - did you do too much at that dose or 12.5mg because you felt better?

As for why after so long at 4.5mg this suddenly happened, it difficult to tell.. that dose might have “just” been enough , and then suddenly it’s not, were you under any stress [physical or mental] a few months previously to flaring? If your dose is only just in the brink of being sufficient, it can take months for the inflammation to build up and be a problem.. see PMRpro’s analogy to a dripping tap in this link -

healthunlocked.com/pmrgcauk...

So think you need to consider 10mg as your starting dose in flare protocol… but you may not be able to drop back down as quickly as you’d like… so maybe in 2 or even 3 step to 5mg..

and you should discuss with rheumatologist.

[Maggieart in reply to DorsetLady]

I did too much.

[PMRpro Ambassador]

The pred dose being too low not only happens because you tapered too fast or too fast. The underlying autoimmune cause of PMR can also increase again for some reason - maybe an infection or other illness, a vaccine, change of medication or stress. This increase in disease activity creates more inflammation and that requires more pred to deal with it. And PMR can also increase in activity for no apparent reason. There appears to be one form of PMR that runs in this way, the disease activity waxing and waning over time, sometimes over a few years before burning out but also sometimes over a much longer period.

[agingfeminist]

PMR is such a mystery...why do we get it in the first place?..why does it decrease? why does it go into remission? why do we get flares? Luckily we have a drug to zap it...hope your taper goes smoothly!

[DorsetLady PMRGCAuk volunteer in reply to agingfeminist]

It’s is… but simple answers [or not] .. to rhetorical questions

why do we get it?… genetics, environmental factors , personal stress.. and blame the Vikings..

why does it decrease and why does it go into remission? ….Self limiting disease, which burns brightly at beginning, but hopefully fizzles out over time [but not as quickly as some believe or would like!]

why do we flare? Variety of reasons, but too little Pred to control disease activity

A drug to zap it… ahh good old Pred 😏

[Maggieart in reply to DorsetLady]

blame the Vikings...love it!

[Maggieart]

I am at 10 mg and will stay for another 10 days.