Counted my chickens too soon...!

[cribbager]

After finding this great forum, I had an unbelievably easy reduction of pred from 15mg summer '21 to 0.5mg for 4 weeks in November '23. I'm afraid I was counting my chickens, but PMR decided to show me that it was still in charge! I began to get niggles in the shoulders and thighs, so I upped to 5mg for 10 days before coming back down to 2mg where I've been for 6 weeks BUT my symptoms have increased: still nothing like when I was first diagnosed but increased stiffness, pain in thighs bending down or walking. I suspect, in PMR Pro's description, I didn't quite ' empty the bucket' before going back down. I've noted the advice about not yo-yoing, so could you give me a steer please as to the best way forward. Thanks in advance

[DorsetLady PMRGCAuk volunteer]

You might find that just an extra 1mg might be enough… so try that for a week.. but have to say I fear you may have to go through the flare protocol again… and maybe 14 days this time and adding 5mg to current dose, not 5mg in total. .. and a slightly slower return. Say from 7mg to 5mg, stay for a week, then down to 3mg rather than 2mg. And stay there until you are sure all okay.

It’s disappointing I know, but quite normal …

[cribbager in reply to DorsetLady]

Thanks so much for your speedy reply. Will follow it through, and see what happens - if suggestion number one doesn't work then (disappointedly) I'll go for suggestion number 2

[DorsetLady PMRGCAuk volunteer in reply to cribbager]

Hope it’s not, but needs must and all that. 😊

[PMRpro Ambassador]

Were you symptom-free at 5mg?

Otherwise, as per DL's reply for a start.

[cribbager in reply to PMRpro]

Was better but not fully - but convinced I should not go past 10 days. Also foolishly didn't take on board that I'd only gone up 4.5mg, not the full 5mg...Many thanks - will do as advised

[DorsetLady PMRGCAuk volunteer in reply to cribbager]

14days is usual cut off point quoted -by me anyway! 😊

[cribbager in reply to DorsetLady]

Sorry - I'd got it fixed in my head...so scared that I might end up on the higher dose and not be able to reduce...silly .e

[cribbager in reply to cribbager]

Should read silly me...

[PMRpro Ambassador in reply to cribbager]

If you have got to zero without too many adrenal-related problems, you probably aren't too much at risk of developing too big a problem. What IS a problem is the PMR part getting too bad. Half a mg can make a massive difference as well.

We tend to say 7-10 days mostly though it is really 10-14 days. But we don't like to encourage people to keep going when they don't need to.

[cribbager in reply to PMRpro]

Understood - and thanks

[DorsetLady PMRGCAuk volunteer in reply to cribbager]

Not really silly, but as PMRpro says you don't want to on higher dose longer than necessary.. but sometimes you need 14 days..

[cribbager in reply to DorsetLady]

Thanks again - have gone to 3mg today and will monitor

[DorsetLady PMRGCAuk volunteer in reply to cribbager]

Oke doke… 😊

[Gimme]

Useful comments. I fear that I am in a similar position atm.

[cribbager in reply to Gimme]

Hang in there - it WILL pass, but in its own time