Prednisolone withdrawal: Hi. I've been tapering by... - PMRGCAuk

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Prednisolone withdrawal

Dontwannabesick profile image
22 Replies

Hi. I've been tapering by .5 mg every with very few problems. Now a week after after reducing to .5 mg I have abdominal pain, slight diarrhoea and occasional nausea. Is it likely to be steroid withdrawal at these low doses, or should I be looking at other possibilities? Thanks in advance.

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Dontwannabesick
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22 Replies
Dontwannabesick profile image
Dontwannabesick

Sorry, that should have read tapering by .5 mg every 8 weeks!

PMRpro profile image
PMRproAmbassador

Either coincidence (always possible) or maybe adrenal insufficiency - a study suggested that 2mg of pred is plenty for day to day functioning. Maybe you have just crossed the line from adequate to not quite enough.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Wouldn’t have thought withdrawal symptom, they usually replicate your illness, not what you describe.

Could be adrenals stuttering, have you have anything similar in last few months?….see this - if not read before -

healthunlocked.com/pmrgcauk...

Weather perhaps, are you dehydrated?

Or just a tummy bug doing the rounds?

Suedeshayes profile image
Suedeshayes in reply to DorsetLady

Hi DL, At 2mg of prednisone are the adrenal glands still stuttering? I thought that if someone got to this low number, they would be working and at a higher figure, say 7mg, that is when they are trying to kick in.

I am at 2.5mg, after 5 years, and I wake with sore shoulders and some general pain and stiffness in neck and arms, but that improves throughout the day. I am loathe to increase dose, as it’s mangeable like this and I’ve been on this dose for a couple of months. I walk and swim most days, and golf is now on the agenda, which is why I’m trying to stay at this dose, although I have a general tiredness in the evenings. Have you any thoughts for me please? Kind regards, Sue

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Suedeshayes

It’s not an exact science unfortunately-we always say around 7.5mg they should start thinking about working -but for some it’s a lot lower before they really seem to get going. For me, I lost all the fatigue once I got to 3mg, but it can take up to a year once off Pred for them to be fully functioning.

Sounds as if 5mg is only just enough for your illness, so monitor how things are and certainly don’t taper in a hurry any time soon…but don’t let the pain increase either. As for general tiredness would say that probably a combination of the day’s activity and maybe adrenals.

Suedeshayes profile image
Suedeshayes in reply to DorsetLady

Thank you. x

Exflex profile image
Exflex in reply to DorsetLady

Just to add to DorsetLady’s comment. I was suffering from fatigue, mainly mid afternoon, when I transitioned below 7mg but now that I’m on 2.5mg things have improved w.r.t fatigue. I can however still have a doze after lunch most days, but only for about 15 minutes or so. I’m going to try the 2.5mg to 2mg slow reduction starting next week. I use DL’s simple tapering plan and would recommend it to others.

PMRpro profile image
PMRproAmbassador in reply to Suedeshayes

Not necessarily at all - a more recent study says that 2mg is closer to the physiological dose than the 7.5mg said previously. Or perhaps a better way of looking at it is that 2mg can be enough to provide the corticosteroid required for day to day ordinary function.

Theoretically your 2.5mg is low enough that the adrenal function should be triggered to produce morning cortisol - that depends on the level at about midnight being low enought to flick the switch and if you take 2.5mg early morning, there will be no pred in the body by midnight. In that case, if the adrenals are working you are producing cortisol in the morning. If your doctor does a basal cortisol level about 9am without you having taken pred in the previous 24 hours you can find out how much it is producing.

Suedeshayes profile image
Suedeshayes in reply to PMRpro

Hi. Do you mean that 2mg of prednisone can provide the amount the body needs? So adrenal glands don’t necessarily have to work when taking that amount?

PMRpro profile image
PMRproAmbassador in reply to Suedeshayes

According to the group in London 2-4mg pred is more like the amount required - I can't find the study but have found this about replacement therapy which is interesting, related and has a good bit about Sick Day rules, defining what sort of illness requires what managment:

imperialendo.com/prednisolone

while this

researchgate.net/publicatio...

discusses how pred is better than HC for replacement therapy - very relevant for us I think

Whist profile image
Whist in reply to Suedeshayes

Stay on the dose if possible

piglette profile image
piglette

There does seem to be a bug going round with those symptoms, which is a possibility.

Twopies profile image
Twopies

I have it too at 6 mg. Am hoping it’s the tapering/adrenal insufficiency/adrenals struggling syndrome. Don’t think it’s a bug as I don’t go anywhere. Neat name you have, gonna change mine to dontwanntabesickeither.

Nextoneplease profile image
Nextoneplease in reply to Twopies

I’ve had the bug (badly) and I’m on 11mg and don’t go anywhere!

Dontwannabesickeitherthesecond 😂x

Koalajane profile image
Koalajane in reply to Nextoneplease

I think I have had similar, very bad diarrhoea and nausea, then weakness. Fortunately it only lasted 24 hours

Dontwannabesick profile image
Dontwannabesick

Thanks all for your comments. Glad to learn it's probably not a flare. Could be a tummy bug I visited my gravely ill aunt in her care home the day before it started. But also two days before that my beloved dog became really ill and had to be put to sleep, so I think adrenals may also be in the frame. I'll just take it easy and see what happens.

Sophiestree profile image
Sophiestree in reply to Dontwannabesick

I think you might have answered your question there. Stress always causes me stomach upset and to lose your dog could well have been the final push over the edge. I'm so sorry, it's heartbreaking I know. Certainly don't reduce any further for a while. Virtual hug for you.

Floridafan profile image
Floridafan

I have had the same symptoms as you for 10 days now, my OH had them and recovered after 3 days but mine are still lingering. I’m wondering if having an autoimmune disease is the reason it’s taking longer to recover.

PMRnewbie2017 profile image
PMRnewbie2017

My Covid started like that. I thought I was having another of my lack of cortisol moments. When I looked up the symptoms of these new variants there are digestive symptoms in the mix. Just a thought?

Dontwannabesick profile image
Dontwannabesick in reply to PMRnewbie2017

Hi, thanks for that. We do LFT every 3 days and they have all been negative,

PMRpro profile image
PMRproAmbassador in reply to Dontwannabesick

They are notoriously unreliable with Omicron! My daughter took 3 daily tests after symptoms started to get a positive and she tried a different pack in the end - to find one was positive ad one negative done at the same time!

Karendeena profile image
Karendeena

Hi there, this happened to me whilst tapering. Still does to a certain extent. I am on 2mg so will see what happens when I go down to 1mg (perhaps 1.5 mg). I think it's just adrenals or coming off a powerful drug

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