Tapering woes

[random901]

Hail, fellow pilgrims! I had reduced to 10 mg pred from 12.5, but the aches and pains, particularly sharp ones in LHS temple, soon returned. Rheumy advice: go to 12.5 for 2 weeks, and if no improvement, continue another 2 weeks. Suggested it was a stress headache owing to father's impending death and investigations for possible bladder cancer for me. Absolutely no improvement, and felt wretched. So took matters into own hands and went to 15 pred where I'd last felt comfortable. After 10 days, things very much better, including virtually no headache (despite father passing away yesterday, and so far all-clear for me). Should I now go back to 10? 12.5? Or perhaps the often-suggested 10% reduction - ie 13.5? Would welcome your thoughts.

[DorsetLady PMRGCAuk volunteer]

I'd stay at 15mg for a little longer, and then 1mg reductions - you have a lot going on, and will have for some time...as those of us who have been in similar situation know.

Commiserations on your father's passing... 🌸

[PMRpro Ambassador]

Sorry to hear about your father - and the investigations for you. Hugs.

Frankly - no wonder you flared! Before my husband died I'd needed far more pred to cope. And the need didn't go as soon as it was over, it continued for a few months. It isn't a stress headache - it is the effect of stress on your immune systems and the underlying disorder for the PMR/GCA increases in activity, you flare.

I think you need to taper from here again - possibly1mg at a time but definitely NOT more than 10% at a time..

[random901 in reply to PMRpro]

Thank you PMRpro & DL. I'll stay at 15 for a week, then reduce by 1 mg each month. And thanks also for your emotional support 💐

[PMRpro Ambassador in reply to random901]

Been there, done that. It isn't easy.

[DorsetLady PMRGCAuk volunteer in reply to random901]

As PMRpro has said, been there.. so we do know the effect it can have on illness.

[Grammy80]

As I tapered, I would stay at the new dosage for 4 weeks, maybe a bit more. With all that has transpired, I wouldn't feel comfortable in shorter increments...see if our knowledgable 💞DorsetLady and PMRpro comment. My sympathies at your Dad's passing, peace.

[random901 in reply to Grammy80]

Thanks, Grammy80 💐

[Bcol]

Nothing I can add to DL and PMRpro comments and condolences and sympathy on your Dad's passing. 🫂🫂

[Angelsmummy]

So sorry for your loss,look after yourself eh?xx💐

[Zebedee44]

There might be some sense of relief now that your father has passed away but you will need all your energy to get through his period of distress so you will need your 15mg and possibly even a little more. Do not think of tapering at this sad time. Sending condolences

[ChrisBeeLoop]

So sorry for your loss. There is always so much tidying up to do. Regarding tapering, I agree with the 10% rule but actually went further at the 15mg level by reducing ¼ mg each week. It’s very easy with a pill cutter. I got to the same place in the end.