Levels of acceptable pain

[Pawscat11]

After 2 years of taking prednisone with 2 different consultants and yoyoing around my latest consultant is trying to get me down to lower levels. I am currently tapering from 12.5 to 10 with 11.25 in between. Here in Spain the smallest tablet is 2.5mg so half is 1.25. I have once been at 5mg but after my first covid vaccine had a massive flare up and started again at 20mg. I then got to 12.5mg and caught covid this July and had a flare up again. This time my consultant has brought me down faster with only 4 days at 20, 4 days at 15 and a slower taper from 12.5mg. I cant work out whether symptoms I am feeling are because of the reduction or that it will pass if I stick it out. Its certainly not as bad as aflare up. Should I be aiming for no pain and then reduce or manageable pain or will it eventually settle once my body gets used to lower dose. I have PMR in both shoulder region and much worse in hips/thighs area. I also have bursitis in both hips which is separately treated with steroid injections. I take my prednisone at 3.30am as I run a guest house and can not be stiff/ struggling to function in the morning. I also have been prescribed Lorazepam as I really struggle to sleep as my brain feels wired. I am also experiencing hot flushes which seem linked to flare up.((menopause ended some time ago) I am 56 years old and my Mum and aunt also had PMR. Any help appreciated as I see consultant next week. Bloods just done and no high levels showing.

[PMRpro Ambassador]

I think you need to slow down now and allow yourself to get to a stable level of how you feel. If you flare because of overshooting the dose you need you don't need to go back t the beginning necessarily - but it is a not uncommon mistake doctors make. Often adding 5mg to the dose you flared at is enough and the go back to the last dose you were good at. I get sweats when I am about to overshoot the dose I need and develop a flare.

However - flaring because of Covid may well mean the whole thing has reset and you need MORE pred because the disease is more active so reducing so fast is counterproductive. You need what you need to manage the inflammation - and you needed to identify what you can achieve with that starting dose of pred so 4 days wasn't enough. Until that original build up of inflammation is sorted out, it is next to impossible to reduce without pain. And THAT is a bit pointless.

[Pawscat11 in reply to PMRpro]

Thank you. I had hoped you would reply to my question. I also think 4 days was not enough at 20 to stop the flare after covid. I will talk it through with the consultant next week but may stay at 10mg until then to see if I deteriorate further.