Tapering prednisolone but need boost

[Esmereld]

I have been taking prednisolone for about 18 months now. Originally to take me through a change of drugs because I was in a bit of a pickle. Started on 7 1/2 mg. got new drugs. Reduced to 5 mg in one hit and was fine. Tapered by half a milligram every two weeks or a month and now on 2 mg. (minor increase in symptoms each reduction but settled after a while.). I have tried 3 times now to reduce to 1 mg but it’s always the same. I end up in pain. I always have some pain but it gets a lot worse. As a result of my recent efforts to reduce to 1 mg I’ve ended up with the most awful flare in my right knee (swelling actually visible) amongst minor increased symptoms all round which I accept. It is beyond excruciating and has reduced me to tears. So now I’m thinking maybe I will take an extra three or 4 mg for a few days in order to reduce the knee swelling/pain. I’m wondering though if I do that am I setting myself back on my tapering?. Anyone been through this?. It’s a quick fix I’m looking for. Taking brufen, paracetamol, the odd g & t. 🍸 not all in the same glass I should say but even so it doesn’t help enough. Got some volterol gel somewhere. Will dig it out.

[oldtimer]

It sounds as if your disease is not under proper control by your other medication.

Have you let your medical team know? You might need a change or an increase in dose of whatever you are taking to suppress your immune system to stop it attacking your joints (and anything else).

Personally I would temporarily increase the steroids, but it does depend a bit on your medical team and how much responsibility they expect you to have. You are not at much risk of long term side effects with low dose steroids, but, of course, it's always better to come off them if you can!

[Esmereld in reply to oldtimer]

Thanks oldtimer. I have left a message on the nurse’s office phone. I might pop in on the off chance this afternoon. I have a physio appointment at 2 which is close to Rheumatology. I think you might be right. My new ish drug is benapali and I never felt it was doing much. It’s flippin’ expensive too. I might suggest a change.

[Esmereld in reply to oldtimer]

Hi. Popped into rheumatology on the off chance and saw my favourite nurse straight away. How brilliant. I’m so lucky. I’m to increase mtx and up steroids for a few days to 5 mg and wean down 1 mg a week. Fingers crossed.

[oldtimer in reply to Esmereld]

Good result. Hope you do better later with tapering off.

[KittyJ]

The last few mg pred taper was the most difficult for me. I eventually did it by going very slowly. Your drop from 2mg to 1mg is a 50% drop. How I did it was 2,2,2,1,2,2,2 every week gradually dropping one day extra to 1 mg each month. Then doing the same 1 to 0mg. If that is making sense. I had been on them a very long time though. Do talk to your rheumy though as they are the best to advise what you should do and I can only tell you my experiences, which although my rheumy advised me, your rheumy may want you to do it differently. Good luck, you are getting there 😊

[Esmereld in reply to KittyJ]

Hi. Yeah I tried that already but anyway Popped into rheumatology on the off chance and saw my favourite nurse straight away. How brilliant. I’m so lucky. I’m to increase mtx and up steroids for a few days to 5 mg and wean down 1 mg a week. Fingers crossed.

[Hidden]

esmerald I have been on and off Pred since Aug. I have noted anything under 4mg things creep back. At my last clinic the nurse said they dont believe in being any lower than 3mg. So I tend to make it work for me and local GP supports me. 4 if tapering, 0mg if feel ok, 5mg when hands bad etc to keep me sane whilst I wait for MTX to kick in as only just started.

as ever talk to Doc or clinic re your needs.

[Esmereld in reply to Hidden]

Hi. Popped into rheumatology on the off chance and saw my favourite nurse straight away. How brilliant. I’m so lucky. I’m to increase mtx and up steroids for a few days to 5 mg and wean down 1 mg a week. Fingers crossed. Thanks for the support.