Steroid taper and withdrawal

[Lynnekw123]

How long after a steroid taper ended did you still feel withdrawal symptoms and what were they?

[Hidden]

Hi Lynnekw123,

I haven’t really had withdrawal symptoms while tapering steroids this time. You shouldn’t have withdrawal symptoms if you do it very slowly. I’m not sure if you mean withdrawal symptoms or flaring? I’ve been reducing by 0.5mg a month. Last time I tried I had to stop the tapering but I’m now on benepali and am doing much better this time and hope to be off them completely soon.

[Lynnekw123 in reply to Hidden]

Thanks, I have been on steroids for 3 years and have began a slow taper about seven months ago when I was at 4mg of Medrol (a little stronger than prednisone) I am doing okay now at .5 mg but I am petrified of what will happen at 0

[Hidden in reply to Lynnekw123]

I’ve just gone down to 1mg, it is scary to think of being off them completely, I’ve been on them 20+years. Sounds such a small amount to be taking really but I’ve never been able to go this low before so fingers crossed. I hope you get off them soon.

[Lynnekw123 in reply to Hidden]

Wow! 20 years! Your adrenals still work? I am on them for 3 and I worry. As you lower the dosage are you getting any interesting symptoms?

[Hidden in reply to Lynnekw123]

I haven’t been on a high dose for all that time, I was on 5mg for a long time and managed to drop to 3mg before flaring badlyand stayed there for a few years until the last six months. I haven’t noticed joint wise any difference but I’m not sure what to look out for otherwise to be honest.

[Lynnekw123 in reply to Hidden]

Do you feel you flared from the the decrease? When I tapered from 3.5 to 3, I had pins and needles in my legs for three weeks. Now between 1mg and .5 mg I am experiencing hip and toe tip pain

[Hidden in reply to Lynnekw123]

Yes definitely from the decrease, I think I did too much at a time, I just went back up slightly and was ok again.

[BonnieT in reply to Hidden]

I have a cousin who has been on them for 18 years. I guess it’s not that highly unusual. I hope not to need to follow that route, but who knows.

[NeonkittyUK]

I tapered from 20mgs Prednisilone for a month then 15 for 2 weeks then 10 for a week then 5 for a month then for the next six months I was tapering down from 2.5 so slowly till I got to 0.5mg. By the time I got down to 2.5 my Rituximab infusions had started to have good effect after 3 months. I had a really stubborn weight gain and moon face with the steroids and the face went down after 2 months and the rest .. I'm still losing but have made great inroads. It affects everyone differently. I felt low and tearful on oral steroids and I snapped a lot which wasn't me. They are wonderful to get you moving and relieve stiffness and pain. The side effects can be rather unwelcome. Hope you don't have problems and all goes well. X

[Hessie5]

Hi Lynnekw - which ones are you on? I am tapering down from Predinosine, 1 month only. I am dreading coming off as still waiting for my new biologics - fingers crossed it all works out. I am starting to feel stiff, tender points and pain in feet and ankles.

[Lynnekw123 in reply to Hessie5]

Hi , I am on Medrol. I also inject 22.5 mg of methotrexate. Lately my hip and toe tips have begun to hurt me. Not sure if it is RA related or tapering related.

[HappykindaGal]

I took them for 3 years. Came off first time and failed. Second attempt and Inflammation levels soared. Prescribed Benepali and came off pred again 6 weeks ago and success! Still a bit creaky, but pretty much ok and the exhaustion has gone. Weight gain was totally self inflicted as I couldn’t stop eating taking steroids. Definitely give you the munchies.

[Hidden in reply to HappykindaGal]

Well done Cwendyn, I’m hoping I’ll lose a bit of weight when I finally stop.

[Nsmith13]

Yes I was on them on and off for months I've had mood swings and feel very tearful

[Kalimera57 in reply to Nsmith13]

I’m glad I read this as I’ve been on steroids for 2 and a half weeks and yesterday I just wanted to cry and cry. I started on 20 mg and now I’m on 10. Next week is my last week.

[Lynnekw123 in reply to Kalimera57]

From 10mg to nothing in a week?? I think it might be too fast.

[Kalimera57 in reply to Lynnekw123]

Oops! No I have a week on 1 tablet!

[Joy_1]

Hi Lynne

I have been playing a cyclical game of trying to get off steroids for the last 5 years. I can confirm that I get withdrawal symptoms.

Every time I hit 5.5mg Pred I would flare 'big time'. Finally following more adjustments to meds last year I managed to get past my 'tipping point' and am now on 2.5mg. I drop by 0.5mg every 4 weeks.

My withdrawal symptoms can either be non existent, last 48hrs or 1 week. My symptoms tend to be extreme tiredness and pain usually in feet but this time hands too.

Joy

[Lynnekw123 in reply to Joy_1]

Thank you! I thought I was going crazy. Lately, as I move from 1mg to .5 mg my left hip and the tips of my toes are killing me. I was very confused because my RA never includes those areas.

[Joy_1 in reply to Lynnekw123]

Not sure what to suggest re your hip other than Tiger Balm (the white one works for me). As for your toes have you tried bathing them in warm water with Epsom Salts?

Moving from 3mg to 2.5mg I have had a lot of pain and stiffness for the first time in my hands. Usually I get a bit of pain but no stiffness in my hands with the steroid drops. I thought eek once again I have hit a wall.

My rheumatologist told me to push on through unless I flare. So I have been taking paracetamol for the last month. I don't usually need pain killers other than a bit of Tiger Balm on my knees at night. So I have been taking 2 paracetamol with my breakfast to get me going and one later in the day and that has really helped. Plus bathing my hands in hot water for around 15mins when they are really painful + stiff with Epsom Salts. That seems to have done the trick. In the last couple of days I have not had to take any paracetamol so I am hoping that's me got use to the 2.5mg.

What my rheumatologist told me once I had crossed the 5.5mg point was "remember each 0.5mg drop now represents in percentage terms quite a significant drop in steroids for you body to come to terms with".

So you moving from 1 to 0.5mg is a big jump perhaps.

However as we all say 'I am no medical expert', only talking from 5 years experience of playing the steroid game.

Good luck!

Joy

[Lynnekw123 in reply to Joy_1]

Do I understand you correctly that you knees and hands were not affected by your RA but are a result of steroid tapering and it lasted a little over a month?

[Joy_1 in reply to Lynnekw123]

My hands and feet are affected by my RA. Plus fatigue of course. When I taper these are the areas that get affected by the steroid tapering.

[Lynnekw123 in reply to Joy_1]

Oh ... interesting... my hips and toes were not affected by my RA. If I felt pain in my hands, shoulders, neck or jaw I would get confused if it was from the RA or the taper

[Joy_1 in reply to Lynnekw123]

Perhaps then it is worth seeing what the doc says.

all the best

Joy

[lKeith]

Lynnekw123

Hi, I haven't had signs of withdrawal symptoms after taking at least 2No spans on these tablets to get a chest infection out of the way.

I have to admit to not feeling any difference if I'm on the steroids on their own.

If you are having withdrawal symptoms I would consult your GP.

IKeith