I’ve been on prednisolone for the last 2years now. I’ve tried weaning off many times but can never get below 10mg! I’ve never struggled to taper down before and usually would have no problem tapering at 5mg every 7/10 days usually if from a higher dose.
My dilemma currently is that I’ve been stuck at 20/25mg of prednisolone since October. Since the beginning of March I’ve started tapping 1mg now every 7/14days..it feels so slow but I have to keep telling myself I’m making good progress. I’m currently at 14mg but it feels like the withdrawal side effects have kicked in. Is it normal that it feels like I’m having a mini asthma flare? Any tips on how to manage side effects? I really need to try hard at getting down to 10mg at least..the steroids are really taking there toll on me now😕
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JustR
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Side effects will vary - the withdrawal effects tend to be separate to asthma symptoms (for me) - although I do notice it with my asthma (have also been doing a similarly speedy wean 🤣).
It depends though if it passes or it's not manageable - if it's not (asthma wise) then that's a sign you shouldn't be reducing it further and need to talk to your doctor I think - I know you want or need to wean but if you can't, you can't. And it's possible that your body won't cope below a certain amount. I used to be on 8mg maintenance but have been on 10mg for a while now (maintenance) because an endocrinologist said it's likely my body needs that amount as it won't be making its own now.
I have no way to manage it though..... it's really really hard when things are tricky like this (and often those who don't need to wean - or do but it's in more usual sized drops - don't understand quite how hard it is as fortunately they're not in that position!)
Some people find alternate days work (eg 14mg, 13mg, 14, 13, etc) for a week then 13mg for a week, then alternate 13 and 12...) But I can't alternate as my body hates the changes. But maybe worth a go?
DISCLAIMER: for anyone reading who is not JustR, no-one should be weaning or reducing steroids (or other medication) without consulting their nurse/GP/team. My reply here is written specifically with JustR and her situation/history in mind!
Had an asthma follow up with consultant yesterday and was told to keep going slow and at my own pace..not helpful at all..
I had to remind it’s been 2years🤣
I’m usually rubbish for the first few days when I’ve dropped..but today I’ve needed my ventolin..I don’t usually like to take it unless really really needed because it can be too easy to rely on it if you know what I mean.
My endocrinologist consultant wants me to get to 10mg if possible so they can check my cortisol/adrenaline etc..it feels like a huge task at the moment. I definitely think it’s all linked to this now.
I’ve tried alternative days and like you it’s never suited me.
It’s the extreme fatigue that I find makes my breathing harder when I’m weaning.
I think I’m going to try staying on this dose a little longer if needed, it’s just so hard taking it slowly because some days I’m convinced I’ll be off them in no time..but then reality sinks in..
In the past I've done longer on each dose which helped. Maybe try staying on that dose til it feels more settled? I know this time I've not dropped on the expected day if the previous day or night has been iffy.
Glad your consultant has said that though. On the surface it's not helpful as such but most consultants would say well we do it like this and tough.
With the reliever, do use it for symptoms. Partly as dealing with them might help this process and so it might be smoother or even quicker, but partly because, like with pain medication, if one leaves it til it's worse, it's harder to get on top of and actually then becomes an issue to deal with with more steroids. But keeping on top of it, dealing with symptoms without holding off, can mean they're easier to knock on the head. It's not relying on it as it's helping you get through this process - well in a sense it is relying on it but to support the process . A bit like starting a new inhaler and needing that crutch initially. Plus you can see over a few days your vent use reducing and so being ready for the next (delightful!) drop.
DISCLAIMER: for anyone reading who is not JustR, no-one should be weaning or reducing steroids (or other medication) without consulting their nurse/GP/team. My reply here is written specifically with JustR and her situation/history in mind!
Yes good luck - you've got the right mindset that even tiny drops more slowly is ok. I've nearly finished my wean which a consultant (not my one!) refused to entertain in February but which will have taken 7-8 weeks (40mg down to 10mg) by the time it's done....yeah didn't need that wean at all then....🙄
Hi , you may find that available information here has been censored ! In view of the horrible side effects of prednisolone it is very disappointing that the posts I made on this forum about my own experience of a much reduced dose of prednisolone being effective without the side effects have been deleted by admin . Not withstanding the fact that I stressed that this was my personal experience and any adjustment must be done with a doctors supervision . It seems like admin wish to withhold useful advice because they deem people incapable of making their own informed decisions.
Has your doctor talked to you about biologics? Xolair helped me wean off prednisone. Also, have you had your cortisol level checked? It's a good idea to make sure you haven't developed any adrenal issues from being on prednisone for so long. I developed adrenal insufficiency after years of frequent prednisone use so I always mention that on this message board-
I feel your pain! The steroid side effects can be so uncomfortable and frustrating.
Yes I’ve tried Xolair last year and it didn’t really make much difference so I didn’t continue unfortunately..my consultants mentioned other biologics but keeps saying I’m not in range to be considered due to my eosinophil levels😕But surely being on long term pred with effect these levels?
I’ve got an endocrinology appointment in May and hoping I’ll get my tests done, it’s all been delayed due to covid!
I’m sure due to my recent symptoms that I’m suffering with some possible adrenaline deficiency.
Whilst the steroids have helped with my asthma, I never pictured 2years on I would still be relying on them so much😔
Bless you ,hope you improve soon.The only way I can accept the side effects of prednisolone(osteoporosis ,pre diabetes ,eye problems ,etc is to remind myself how lucky I am it's kept me alive .
I do hope that under medical supervision slowly but surely you can wean off.
I don't think it matters how long it takes if you manage to reduce /wean off.
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