biologic working - how quick can I come down on my steroids?

[conniegraham]

I have been taking tocilizumab for nearly 4 weeks and am starting to feel a difference in pain! The consultant said if it starts working he wants me to drop down on my steroids but he didn’t advise how quickly I am able to. Any advice given would be great, thank you.

[allanah]

Tbh i'd ring your chemist before they shut xxx

[Lolabridge]

I have found that my hands are the last to benefit from the biologic I am on (not yours). So in your position I would contact your consultant or specialist nurse for advice. You are probably Aware that it has to be done slowly (a taper programme) to allow your body to readjust.

[conniegraham in reply to Lolabridge]

Yes it seems to be just my left hand which is a bit dodgy now ! Will do thank you

[KittyJ]

Definitely one to ask your rheumy or rheumy nurse 😊

[conniegraham in reply to KittyJ]

Thank you

[oldtimer]

It depends how long you have been on and what dose. If only a short time you can usually come down quite quickly, but if it's a high dose even that will take a while.

Ask the medical team for advice.

[conniegraham in reply to oldtimer]

I will do, thank you :))

[nomoreheels]

Hiya Connie. Unfortunately it's one for your team or GP to answer. When you first introduced yourself you did say though you were taking 10mg, I guess for around 4 months now? Well, it will need to be a slow taper as you need to give your adrenal glands time to resume back to their normal function but they'll give you a personalised plan I'm sure.

Sorry it's not a clear guesstimate but it's a great big positive that your Rheumy is hopeful enough to say you can start tapering your prednisolone. 😊

[conniegraham in reply to nomoreheels]

Thank you this is very helpful :)) I will attempt to come up with a plan with the rheumy team

[Swimming20]

Hi ..l have been on Tocilzumab for 4wks now..l feel 50% better which is great ..my consultant give me a program he put me on 30m steroids then 20m now on 10m my next drop is 7.5 which not looking forward to as this is the level l start dipping ..l am in this level till l see the consultant next ..so push for a program good luck xx

[conniegraham in reply to Swimming20]

This is so helpful thank you ! Good luck too xx

[Fruitandnutcase]

You should be given a programme on how to reduce. I was told the rate to cut down at before starting when I was given a three month course of steroids before I started hydroxychloroquine and I cut down weekly as soon as I started on them so if you’ve been taking them for a while don’t just stop. Either ask your rheumy or the pharmacist for advice.

In the past I had steroids from the doctor - she thought I might have had something that I didn’t have and gave me steroids until she called a few days later to say I could stop because the blood test results showed I was ok. I queried stopping and she said I hadn’t been taking them long enough to need to reduce before stopping.

[conniegraham in reply to Fruitandnutcase]

the doctors were quite vague about how to drop down so I’ll definitely give them a ring and ask. thank you for your help

[medway-lady]

It depends on how long you've been taking it, so you must talk to a doctor. Don't just stop if you've been taking for a while as it will be tapered off and so you might need more prescribed to reduce down.. Stopping suddenly can be horrid and cause problems.

[conniegraham in reply to medway-lady]

I will do, thank you !

[Mollieharry]

Advice I was given for tapering steroids was dead slow and stop.rhuemo told me to drop by 1 mg monthly.as others have said check with your rhuemo team.glad to hear your feeling a difference with your new meds.

[conniegraham in reply to Mollieharry]

Oh that’s interesting to hear, and thank you !

[dwsurquhart]

I dropped my prednisone quickly and the side effects were horrible. I do not recommend dropping quickly.

As for the tocilizumab, I have not been on over 3 years, and feel pretty good.

Please follow the advice of your rheumy, pharmacist, and gp. This will make the transition off steroids the best it can be.

[conniegraham in reply to dwsurquhart]

Thank you this is so helpful!