Advice re tapering

[Pongo13]

On Saturday I am meant to go from 7.5 to 7 on my fortnightly reduction plan agreed with Dr. My last letter to her agreed this ongoing plan with the proviso I could ring if I struggled. So was disappointed next phone appointment is 24 September and next appointment would be thereafter. I also found the dr had, once again, a lapse in her maths with my last prescription as one semi full packet of 1 mgs and same for 5 mgs meant I was always going to have to phone up again sooner rather than later. Anyway, spoke to duty Dr (whom I know personally and hence usually try to avoid) - explained my struggles, aching neck,hips, headache, not sleeping, tired, recurrence of chelitis, flare or adrenals - who know's. "I'm about to reduce to 7" I say and immediately she says "no don't reduce, go up". Go back to 8 for a month. A prescription for 100 1s and more 5s awaits! Magic. Now, what would the fabulous aunties advise? Going up a half seems paltry! Should I treat myself to a week on 8 and a half and then come down to 8 for a month? Or shall I just go up a half and hope it gets back on top of this creeping lethargy and stiffness? Thanks in advance! (Finally should I pop the extra amount tonight? )

[PMRpro Ambassador]

I would pop the extra asap. And I would also have 3 days at 10mg to see if that will clear it all out before dropping straight back to 8mg. It'll work better I suspect and won't do any harm.

As started to read your post I thought "personal friends who are docs aren't always a bad thing..." There are some things I might be reticent about - sorting my PMR isn't one

[Pongo13 in reply to PMRpro]

Thanks! I'm on my way upstairs to get the extra 2.5 and will do as you say. Two more days at 10 the drop to 8 for a month. Really appreciate this. I understand what you are saying re doctor - this lady is probably one of the most popular doctors and inevitably even busier to book in to!

[Hidden in reply to Pongo13]

Good Luck, hope the three days on 10mg help but rest as well, give it a good chance! 🍀

[Pongo13 in reply to Hidden]

Thanks, I will x

[DorsetLady PMRGCAuk volunteer]

Auntie 2 agrees with No1 !

[Pongo13 in reply to DorsetLady]

Thanks! X

[Caro12line]

Agree with Auntie 1 and 2 . Their advice is always very sound. Think you may have hit a blip because your own adrenals should start to wake up and kick in around 7mg and so may be reluctant to start work again! I had the same sort of thing happen around 7mg. Just take it very very slowly with any reductions from now on. It can be very frustrating and slow but you will get there in the end x

[Pongo13 in reply to Caro12line]

Thanks for this. This afternoon I am feeling less pain than I have for a few weeks! Resting while hub makes supper!

[Zhenya]

The Aunties are so right. To give you a very personal account, I was having similar aching problems to you, but on 5mg a day. Rather than mess about with increasing by 1mg I went straight up to 7.5mg and that sorted it straight away. Now, after a few weeks, I am on 7mg and fingers crossed okay. I will continue to decrease by 0.5mg every few weeks or so, holding my breath every time. Good luck to you and please let us know how you get on.

[Pongo13]

Thank you. I was getting short on steroids, despite recent prescription; and whilst adhering to doctors wish to reduce, reduce, reduce, I am following their advice to a point but determined also to heed advice on forum as I know which brings better results long term. More steroids gives the flexibility to listen and act on advice from to aunties and yet still keep the doctor happy. Win win! So much better this afternoon! X