Steroid Withdrawal at lower levels of Prednisone

[LucilleG]

I just started to taper from 5 mg to 4.5 mg, taking my first 4.5 mg dose this past Monday, using the DSNS tapering plan. Besides being very tired the last two days, I have had no other symptoms as of yet. (A bit of background - started getting pain in early Jan 2021, was diagnosed with PMR late May 2021 and was put on 40 mg of Prednisone, with the pain being relieved within hours, with the exception of my upper arms, which took a few days to go away).

Back in early January when I started my taper from 6 to 5.5 mg, I had a day and a half of nausea and dizziness which I took to be my adrenal glands waking up. I also had some niggles in my neck, which is where I always get the first indication of either a flare or steroid withdrawal. I took some Tylenol and it went away, so put the niggles down to steroid withdrawal.

When I had a 5 min phone appointment with my Rheumy in February, I mentioned to them what I wrote above. They agreed with the adrenal glands having to start working, but said that at that low level of Prednisone, I won’t get steroid withdrawal! A year ago, they were accusing me of being addicted to Prednisone, that it was like Cocaine for me...sheesh.

Besides being exhausted often (I’m making sure to rest and nap when I need to), I haven’t had any more nausea or dizziness since the taper from 6 to 5.5 mg in early January. But of course, I will keep an eye out for these symptoms and will make sure to refrain from as much stress as possible and be sure not to overexert myself.

Anyway, I wanted to share what the Rheumy said about not having steroid withdrawal at 5.5 mg or lower. I just can’t believe this to be true.

[Kendrew]

Hi LucilleG,

I know others with more knowledge will be along shortly to advise you, but I just wanted to say firstly that I'm pretty sure that prednisolone is not a medication you can become addicted to! It is however a medication that is difficult to taper off because of it's effect on the adrenal glands. The taper has to be executed very slowly and managed wisely.

Secondly, you most certainly can experience withdrawal symptoms at low doses of steroid....I am currently on 3½mgs of pred and on every taper I do (including this most recent one from 4mgs down to 3½mgs) I experience withdrawal head pains and some other aches & pains during the first couple of weeks, and then they begin to diminish and eventually disappear.

I have been experiencing some symptoms of adrenals waking up ever since taking 5mgs prednisolone and each time I taper down, my adrenals have to work a little bit harder again to makes up the next shortfall.

I'm constantly tired at the moment with days when I feel particularly fatigued & lacking in energy. Sometimes I feel like all my strength has been sapped out of my body and on occasions have felt nauseous and a little wobbly, but once I've stabilised on the new lower dose, these symptoms improve.

When I taper, I am able to differentiate between 'withdrawal' and a 'flare' fairly easily because if the onset of flare-like symptoms emerges within a few days of beginning the taper, then it's likely to be 'withdrawal' and will diminish. If however the onset of flare-like symptoms emerges several weeks into the taper and aches & pains continue to increase, then that's much more likely to be a flare emerging.

There's lots of information under FAQ'S (A-for Adrenals) if you take a look and this should address many of the concerns & questions you may have.

Hope my experience may have helped you understand what may be happening with you.

[Grammy80 in reply to Kendrew]

Kendrew said more than I could offer, but like her, I am now at 3 going to 2.5 on Monday. As you say...I notice physical adjustments...aka...withdrawal, but it passes. Saw the rheumy yesterday and if I get to zero his plan is to keep me on Actemra. We shall see.

I also wanted to say I had a jerk of a doctor who used to reprimand me for my 'reliance and dependence' on pred. He's history...I have GCA and am hoping to keep the vision I have for however many years I add to the 82 already under my belt.💞 😉

[LucilleG in reply to Kendrew]

Thank you so much, Kendrew!

[123-go]

As Kendrew has said, tapering steroids at low doses has to be carried out very carefully and it’s advised to proceed even more slowly at these low doses to give the adrenal glands the best chance of uneventful recovery. Some info found in FAQs:

healthunlocked.com/pmrgcauk...

Well done for trusting your instincts after your rheumy appointment!

[SnazzyD]

Well, I had withdrawal all the way through but it was a bit less as I got lower. The adrenal symptoms we get are not because they are starting to work but the reverse. It is because each time we drop they are required to make that little bit more cortisol and if they can’t, we feel bad. Add in a little bit of activity or illness or stress and you feel it even more if they haven’t squirted out the extra bit of cortisol needed. I found that at low levels it was sometimes difficult to tell which was withdrawal and which was a bit of slow adrenal function. The other thing is that one can feel fine and then bang, you don’t and you have to rest because for whatever reason on that particular day you don’t have enough cortisol. Those kind of days should become fewer.

[DorsetLady PMRGCAuk volunteer]

Oh dear - again. As you said in reply to another thread - Rheumy not on the ball.

Of course you can get steroid withdrawal on lower doses - but sometimes it can be difficult to know the difference between that and adrenals stuttering [although SW usually last a few days, adrenal issues a lot longer].

A couple of links - that might help -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

It isn't - but then, your doctors seem to have some strange concepts about pred anyway! To be fair, there are patients where it all goes smoothlym but they are probably less than half judging by an unpublished study done in Leeds.

However, don't fall into the trap that so many seem to of thinking that adrenal function "kicks in". It isn't like flicking a light switch and it is either dark or light - it is much more like a dimmer switch, and one that gets stuck and jolts at that. There is a level of corticosteroid at which your body functions well, at lower levels it doesn't work so well and you notice the difference until the body sorts itself out well enough to produce sufficient top up to keep you at that level. As the oral pred level falls, the requirement for cortisol increases but it isn't a simple smooth process, Many factors are involved, a lot of structures and hormones have to re-learn their steps before the show can take to the stage.

I suppose to continue that analogy, you could envisage it as a chorus in a musical which starts with a full chorus of experienced singers and dancers who are suddenly all laid off because of illness and replaced by another fully trained group. All goes pretty well but then they are removed one or two at a time and replaced by members of the first group - who have almost forgotten the score in the meantime and are wearing the old costumes. Until they are fully replaced there will be hiccups and ups and downs and the overall impression will be patchy. Even the last couple will take some time to get up to speed.

[LucilleG in reply to PMRpro]

Great analogy!

[Nextoneplease in reply to PMRpro]

Love this 😀 Think my chorus line needs some practice at the moment! x

[Francesbarbara in reply to PMRpro]

Do hope you enjoyed writing this as much as we have enjoyed reading it. Perfect.

[PMRpro Ambassador in reply to Francesbarbara]

I always enjoy writing

[Rachmaninov2 in reply to PMRpro]

Thank you for a very helpful explanation. 🙏

[jaycee444 in reply to PMRpro]

I do wonder about Doctors sometimes. Mine told me that you dont get problems and symptoms with adrenals ‘kicking in’ in you are reducing slowly!

[PMRpro Ambassador in reply to jaycee444]

Depends on the person - too many doctors think that 1mg per months tapers are slow enough to allow adrenal function wake up steadily - if only!!!

[Romilly2]

wonderful analogy PMR pro 😁 I too am tapering very slowly from 5 to 4.5 and have only had 2 doses at 4.5 ( one day last week and one day the week before . I think I have been very lucky thus far whilst tapering but this time I’ve been much more tired and feeling a bit weak is the best description. No return of PMR symptoms. I’ve been sleeping more and stepped back from exercise for the moment just to roll with it . Feel lucky that I’m retired and I can shelve some of my commitments for a bit . On the plus side my painful teeth sensitivity has much improved the last two weeks ! Small positives on the journey 😁

[Broseley]

My rheumy has also said that people who have been on steroids too long are dependent on them and will never get off them. He said I have to come off them in two years total to avoid this. It's due to the adrenal glands being permanently knocked out, he says.

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

I'm too polite to answer that as I could....but I was on steroids for over 4 years. .initially at very high doses...been off for over 6 years now and my adrenals are fine and dandy, thank you very much.

I think if they had been struggling I would have noticed having had 3 replacement surgeries between 2018 and 2020. .. or perhaps I haven't been reading the right book!

[PMRpro Ambassador in reply to Broseley]

Wrong, wrong, wrong. A former member of the forum had been on high dose pred on and off for about 30 years and latterly continuouslyfor about 13 years. When he was put on Actemra he was able to reduce to 3mg/day pred and after a synacthen test was normal his endocrinologist told him he could stop the pred. And he did, successfully.

I know many who were on pred for 4-6 years and have been able to get off pred after that time. Most people on longerterm pred aren't able to get off because of PMR symptoms - PMR doesn't only last 2 years. I've had symptoms for 18 years and there are quite a few here with over 10 years under their belts.

[GerriMc]

I’m on 2mg a day and have tried several times to reduce by just a half a mg using the DSNS method. I’ve had quite bad issues with withdrawal, even with this tiny drop. So Pred withdrawal at 4-5 can certainly be a problem. My rheumatologist, thankfully, says to stay on two if I have to as risking a flare is not worth it. The side effects of such a low dose are negligible anyway. I wish you luck.