Do people have problems with tapering steroids only w... - NRAS

NRAS

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Do people have problems with tapering steroids only when their other meds don't work?

ubound profile image
14 Replies

Is it like once you find the right combination of meds, tapering will become a breeze? Or does that just depend on the person?

Thanks!

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ubound
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14 Replies
Lolabridge profile image
Lolabridge

I think all our experiences are probably different. I managed to get down to 5mg ok but been on 4mg for two weeks and definitely noticing more joint pain and fatigue ☹️. My Rituximab has been working well but my Rheumy warned me I will probably struggle to get off the Prednisolone completely.

However, others have managed to get off Prednisolone completely when their meds have become fully effective.

ubound profile image
ubound in reply to Lolabridge

That is probably because you are already under the physiological dose. But it makes me happy to hear that you got to 5mg with no issues! I read some online leaflets for Prednisone and Deflazacort and they both said that if there is no fear of the original illness relapse, one may reduce the dose rapidly but only until physiological levels. Then tapering should be very slow to ensure proper adrenal function.

Lolabridge profile image
Lolabridge in reply to ubound

I’ve been tapering very slowly anyway as only reducing by 1mg per month. I had been on them a long time though.

in reply to ubound

I took steroids for 8 months last year and half of that time I was tapering from 5 mg to zero. The RA didn't get any worse from tapering, but I was on the highest dose of methotrexate for about a month and on 20 mg for about 5 months after that. I've been on 10 mg MTX since February, been off the steroids completely since 23rd December. Very slow tapering is the way to go irrespective of all other considerations. I've never heard you can do it more quickly when the meds are working well or that slow tapering is only for some people. It's best to deal cautiously with steroids. Best wishes.

Ruth12345 profile image
Ruth12345

Tapering taking me a very long time. Not off then get and started tapering in January

ubound profile image
ubound in reply to Ruth12345

So it will be one year soon! Hope you will be done soon.

Ruth12345 profile image
Ruth12345 in reply to ubound

Had to be put back up (a couple of mg) as I remember a while ago so will be a bit longer. Steady and slow is definately best for me and others I have read on here. I wish you all the best.

Domhem profile image
Domhem

I’ve been trying to taper, I got down to 3.5 (been on them a long time, was very high at one time) but I’ve gone back up to 4.5. It’s really hard to be honest, I don’t know if I’m flaring or it’s withdrawal or both! It definitely isn’t easy, well not for me anyway x

ubound profile image
ubound in reply to Domhem

Yes, it's the same for me, but my dose is much higher.

Domhem profile image
Domhem in reply to ubound

I’ve only been able to do get it down since being on a biologic. Are you on other drugs too?

ubound profile image
ubound in reply to Domhem

Yes I am on Olumiant. But I probably didn't wait until it works full strength and began to taper as soon as I noticed it's working.

Amy_Lee profile image
Amy_Lee

No issue for me to get the prednisolone off completely. However, my rheumy gave me very low dose after I read so many of you take very high dose as compare. I think that could be the reason why I didn’t feel it helped me at all and no issue for me to stop it too.

ubound profile image
ubound in reply to Amy_Lee

Prednisone for a short period of time or a low dose is a completely different experience I think.

Amy_Lee profile image
Amy_Lee in reply to ubound

I believe you are right to say that.

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