Getting off prednisolone after 12 years

[Libbywtl3]

Hi, I am new to the site but I have tried many ways to get off prednisolone. The most I have ever taken was 15mg. I did get down to 5mg several years ago had the usual test and adrenals were apparently functioning. However I did not feel well, although blood profile fine. I ended up going back to 10mg daily. Had several attempts and can get down to about 8mg but eventually over weeks I get tired, sinus problems, nausea etc. They still don’t know if it is. The underlying vasculitis but are still keen for me to reduce but it seems to be getting harder. The question is has anyone any tips for reduction or in a similar position as I can, at times, feel isolated and a failure for my inability to successfully reduce.

[oldtimer]

Why do you want to come off? Do you have any side effects at this dose, or do you just feel normal? Have you been advised to reduce it? What do your Health Care Professionals say about the way you should be reducing?

Sorry to bombard you with questions, but you do need to be clear about it as you will certainly not feel well as you reduce the dose.

I've now been told to stay on minimum 5mg - at this dose, side effects are apparently unlikely. But I have struggled to get this far, reducing by 0.5mg a month from 10mg several times with feeling unwell, aching, tired, joint pains, for the first 7-10 days each time. The last five milligrams were the worst and I even resorted to alternate days to do it more slowly.

A couple of times I have actually succeeded in coming off altogether for a maximum of 10 days (who-hoo! and a great sense of achievement) only to have problems and to have to restart at a higher dose... But recently, after being on a maintenance of 5mg, I have been able to have a short course (a week) at 10mg, then back to 5mg, which seems a better compromise.

If you put steroid reduction into the search box, you will probably find more responses to your question.

[Libbywtl3 in reply to oldtimer]

Thanks for your reply, it’s a bit complicated. Because I presented 12 years+ ago I would have been investigated better had I presented now. As it is they know I have an autoimmune disease ?Vasculitis ? Undifferentiated connective tissue disease. They will not add anything else to the prednisolone and plaquinil as they want me to come down to unmask things. I too have got down to 5mg some years ago and all inflammation markers stayed the same. However I gradually felt ill.

I have tried taking 9mg one day and the rest of the week 10. Then The next week 9mg on two days then the rest 10mg and so on. Usually can drop a bit but struggled this time, hence back to 10mg.

Can I ask if you have been on prednisolone along time?

[oldtimer in reply to Libbywtl3]

I've been on prednisolone continuously (almost) for eleven years now. I only took it occasionally before. This last time was because my bone marrow decided to pack up as part of the Rheumatoid Disease, so that might be why they are not keen for my to come off again!

[Kai--]

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If this helps at all, Libbywtl3, recently listened to podcast ( paddisonprogram.com/stacy-g... ) where gal (‘Stacy’) went from 60mg 😳 of prednisone down to 5mg. 😯

Quite a feat 👣 & may be of interest? 🤔

Wishing you the very best, Libbywtl3. 😌 🙏 🍀 🌺 🌞

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m.youtube.com/watch?v=hZSpr...(Not working as expected?)

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[NeonkittyUK]

Well done to her but would have been useful if this guy had said what his programme actually was!! Obviously oats and probiotics but what else??