Missed prednisone doses ?: I’ve been on a 6 course... - LUPUS UK

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Missed prednisone doses ?

SashaT64 profile image
8 Replies

I’ve been on a 6 course of prednisone which has now been extended to a low 5mg maintenance dose for the next 3-4 months whilst I get started on Azathioprine.

We’ve been away from home for a few days and I forgot to take my pills with me so I missed 3 days.

They’ve done a good job for me, the inflammation is significantly reduced and my bloods are fantastic , but I don’t like me when I take them. They make me irritable and moody and I have an almost constant headache. I also have to take omperazole as they upset my stomach. I’ve also put on about 1/2 stone.

So should I start them again. I’m minded not to - but don’t want to undo all the good they’ve done. But also is it ok to just start again having missed these 3days?

Thanks all

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8 Replies
Spanielmadlady profile image
Spanielmadlady

I've been steroid dependent for 7 years.the steroids keep the inflammation under control until the azathioprine kicks in which is at least 8 weeks .you could well make things harder if the inflammation gets out of control.if you take steroids for more than 3 weeks you cant stop them suddenly they must be reduced slowly. When I drop my steroids I get withdrawal symptoms at 3 days.my maintenance dose is 7 5mgs my highest dose 40mgs and i have to drop them 1 mg a month once below 10mgs.steroids are not a drug you can stop and start as and when .you will ok restarting them but I'd suggest you stick to it.i know they arnt nice drugs but sometimes needs must.

I hope the azathioprine works for you...it didnt for me i developed drug induced hepatitis after 7 weeks xx

happytulip profile image
happytulip

Never stop steroids suddenly. Always taper slowly. You can go into a life-threatening adrenal crisis.

SashaT64 profile image
SashaT64

Thanks both. I wondered if I’d already messed things up by missing these doses. I’ve taken again this morning.

sarahalice profile image
sarahalice

Hi Sasha

Though it is bad to suddenly stop, please don't worry.

From what I've been told, 4ml is the dream dose, if you can get down to that you are at much lower risk of the side effects, something to do with your body starting to make its own cortisone (or whatever hormone pred replaces) again.

Definitely talk to your specialist or nurse about trying to go down to 4. You might be able to do this over the phone.

Unfortunately like so many are, I'm steroid dependant.

All the best, Sarah

whisperit profile image
whisperit

Hello SashaT64

5mg is a pretty low dose.

The main reason people are advised against suddenly stopping taking steroids is to avoid the risk of adrenal crisis. This can happen if you've been taking steroids for a long time, and the normal functioning of your adrenals has been suppressed (steroids are similar to the naturally occuring cortisol and aldesterone hormones, so when you are taking artificial steroids, the body thinks, "Oh, I don't need to produce this any more").

When this happens, omitting the steroids will mean your body is suddenly deprived of the adrenal hormones and you will quickly get headaches, nausea and a drastic loss of energy. In an extreme case, where your natural adrenal response has become very blunted, or even completely shut down, this can turn into a life-threatening adrenal crisis.

Although this is all a bit rubbish, there is a good reason to take steroids - they are a very potent anti-inflammatory and act quickly. So they keep things under control , and when you have an autoimmune flare, they are life-saving.

In any case, when you are on a low maintenance dose, you should aim to reduce steroids only slowly - typically by 0.5mg every couple of weeks - just to give your adrenals the chance to step up again.

You should be able to restart your 5mg dose without any adverse consequences.

x

SashaT64 profile image
SashaT64 in reply to whisperit

Thank you - that’s what main question was. I have restarted this morning.

Interesting what you say about headaches tho. I do suffer with migraines anyway- but since being on the prednisone for the past 8/9 weeks, I’ve had headaches most days. They’re not migraines , but not pleasant irrespective. I see this can be a known side effect with prednisone anyway?

whisperit profile image
whisperit in reply to SashaT64

Yes. My guess is this is something that may ease as your body slowly gets used to supplementary corticoids. Nowadays, I only get those steroid headaches when I have to go onto big doses to control a flare. The headaches associated with adrenal depletion tend to come first thing in the morning, when my cortisol levels are minimal, and come along with nausea and overwhelming tiredness.

DocMartin profile image
DocMartin

In this discussion none of the comments have indicated the importance of the time of day that prednisone is taken, especially when reducing the dose. When taken in the evening there is a greater effect of prednisone on the pituitary and adrenal glands. When a glucocorticoid (like prednisone) is taken in the evening the adrenal then produces less "natural" glucocorticoid (cortisol) the next day as the brain at night detects that there is "enough" or "too much" glucocorticoid circulating and so the pituitary will not send the usual message to the adrenal by not secreting enough ACTH (adrenocorticotrophin) which usually instructs the adrenal to produce the needed amount of cortisol. Thus low levels of cortisol which can result in symptoms (or even collapse if there is stress) as described by Wishperit in the last post. If there has been a dose of prednisone (or similar) taken in the evening , especially a dose of 5 mgms or more, the failure to get the adrenal back into normal production can continue for some time with the risk of collapse if there is a major stress, which needs more cortisol to respond and avoid a collapse. Those doctors and pharmacists who take note of these facts suggest regimens that give small doses (or none) in the evening. When reducing the total daily dose they suggest initially reducing the evening dose slowly until this is stopped or nearly stopped and only then make reductions in the morning and, if taken, mid-day. The research on which these guidelines are based was completed many decades ago but have often not been stressed enough to younger doctors when training. Further comments in this chat from patients who consider they have been helped by instructions to keep evening doses as low as possible would be of interest, as would comment from those who have had no advice on this, including comment on whether evening doses have been linked to insomnia or/and excess urine at night.

If uncertain discuss the topic of what time to take prednisone (and similar "steroids" )with GP, rheumatologist or pharmacist.

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