Prednisone

[Alice70]

First of all happy healthy new year to all .I have been on prednisalone for twoyears I have dropped down to2 and a half mgs I have stayed on this dose for a couple of month until recently my rheaumy nurse has advised me to drop my 2half down by one a week trouble is everytime I have drop one I go to feel sickly also really bad stomach that turns overand over similar to butterfly's this in turn gives me nervous trots up and down to the loo ,is this normal to feel like this it settles down after three or four days but then it is time to drop another,should I be dropping more slowly

[Runrig01]

Personally I would request a blood cortisol to be taken between 8-9am, haven held off your steroids that morning, till the test is taken. You need to make sure your HPA axis is awakening, if it’s not, they’re putting you at risk. Adrenal insufficiency is a potential side effect of taking steroids long term. The symptoms are generally nausea, diarrhoea, stomach pains, lightheaded or dizzy and weight loss. I don’t mean to frighten you but I had a severe stroke in hilts on 4mg and getting all the above symptoms. The stroke was a result of an adrenal crisis, which is life threatening, and I was diagnosed with severe adrenal insufficiency after the stroke. I now need steroids for life, as my adrenals have atrophied and will never recover. If the blood test shows your capable of producing your own cortisol, then you can safely taper. At such low doses I would only drop 0.25-0.5mg each time, and only restart when you feel stable. The test can be done at your gps surgery, but it’s important before continuing to taper. I did recognise I had potential AI, and had an appointment with endocrinologist, unfortunately my stroke was 3 weeks before that 1st appointment. I was 52. Annoyingly I’d phoned the gp the day before the stroke as I was struggling, and asked if I could go back to 5mg, but was told to stay at 4mg till seen. The endo said had I followed my gut, I may have averted the stroke. The 24hrs leading up to the stroke, I’d gone from someone who never stressed, to crying all the time about the stress of trying to reduce my hours at work. Go at your Pace, and only once you know your adrenals have woken up 🤗

[Alice70 in reply to Runrig01]

I am seeing my gp inthe morning at 9 30 this was on another matter I'm not due to take another steriod untill wenes so hopefully he will give me the blood test for adrenal ,scarry isn't it I hope you have recovered from your Stoke well thank you

[Runrig01 in reply to Alice70]

I assume your taking every other day, that may be contributing to your nausea etc, as prednisolone only lasts 24-36hrs. You know you can get prednisolone 2.5mg tablets, I’d also see about getting 1mg as well so you can reduce in smaller tapers. It’s essential the blood test is between 8-9am, when cortisol is at its peak for the day, and 24hrs since taking previous steroids, including inhalers, creams etc . Good luck 🤗

[Alice70 in reply to Runrig01]

Thank you for your knowledge Run rig

[wilbertjellyfish in reply to Alice70]

I agree with runrig, years ago I was unwell trying to get mine down from 5mg and looking back I think I had adrenal issues then...if it had been recognised I might have stayed on the biologic I was on and saved myself years of torture. Now I'd be delighted if I only needed 2.5mg of pred.

[Sunflower1921 in reply to Alice70]

Hi I have taken prednisolone for 20 years and I weaned then down very slowly, to 2.5 mg daily. My GP told me to stay on them as it's dangerous now as my body expects the 2.5 mg daily or it could be fatal, so I'm on it for life. X

[Amnesiac3637]

If the effect is as you say as you drop down the dose then stay on what you’re now on until you speak to your rheumatology nurse again. If you can’t get her (and good luck with trying……) and you’re determined to go down then do as runrig suggests and only drop by 0.5 and take your time doing it -like over a month instead of rushing it and feeling horrible. Steroids aren’t to be messed with as you’ve probably discovered!

[Alice70 in reply to Amnesiac3637]

Thanks for your reply I'm listening seeing my gp in morning

[WilfDog]

So sorry to hear you are feeling like this. I ditto all of Runrig01 advice. I hope you get your blood test so you can make a plan ahead. Good luck and keep us posted xx

[Bowenlady]

hi, I had trouble with Prednisone reduction too. I started taking them in 2019 and was forgotten about during covid so kept being sent renewal prescriptions. I had no idea that I should not have been on the 10mg per day for so long. I put on huge amounts of weight and my skin on my arms is as thin as anything. I now look like a self harmer as my forearms are so scarred. So I went 2 years ago to see rheumatologist who didn’t realise I was still on them. He put me on an 8 week reduction program and when I got down to 6 mg my system went haywire. My legs and feet swole up, and I had infections inside my legs. So they put my steroids up. So I tried the same on a monthly basis instead of weekly and had the same results. So the method I use now was advised on this forum. This is what I did over a 4 week cycle. 10mg, 10, 10, 9mg . Next 4 weeks-10, 9, 10, 9. Next 4 weeks 10, 9, 9, 9. And so on. When I got down to 6 mgs I did it even slower so as to not trigger the response. I am now on 3 each day but do the change for about 2 months before I drop again. So I’ll be starting 2.1,2,2. It’s slow and frustrating but I can’t risk what happened before again. I hope this helps? Just don’t rush things was my motto. X and by the way, I told the rheumatologist the method I was going to use and told him it had been recommended on this forum. He quickly agreed.!

[Doodlereggie]

hi I had the same reaction as you a month ago when I got down to 1 mg preds having been on them since 2001!I felt so ill,awful nausea and couldn’t eat for about 3 weeks.by chance mentioned at hospital appointment with endocrinologist and she suspected adrenal insufficiency.had tests next day,and all was fine ,but my rheumatologist told me to go back to 5 mg ,which I am now on,and stay on that dose for life,as I am 80 and quality of daily life is important..I did take a year to get down from 5 mg to 1 mg as I know from others on here slowly,slowly is the mantra!listen to the previous replies today,as I did,as they are very knowledgeable about preds tapering.good luck,let us know how you get on,as we are with you on this!xx

[Alice70 in reply to Doodlereggie]

My gp has given me 1mgs instead of 2half so I can judge tapering better

[Doodlereggie in reply to Alice70]

Hi

That is very good news that you have 1 mg now,so you can taper as slowly as you like,you have more control over it,and that does help ,I think.good luck xx

[Rainyda]

Interesting topic for me. I'm on a low dosage prednisone, (for R/A) but can't make a good comment. I started in late Nov. with 5 mg . Taking 3 once a day for 7 days; 2 once a day for 7 days; now finishing with 1 once a day for 10 weeks. I do get an upset tummy at times. I don't see Rheumy until Feb. 24th? I will have ask my Dr. for a Lab requisition. Wish you all the best Alice. 💕

[Alice70 in reply to Rainyda]

Thank you saw gp yesterday he gave me 1mgs instead of 2and a half so now now I will be able to judge reducing better

[Rainyda]

Thx for reply. All the best to you. 💕

[Angels54]

Hello Alice . I have been on steroids for a number of years which I’m not happy with ,however, when you in pain you need a fix relief for the pain , I think if you down to that lo amount that’s good , my consultant said I might have to stay on 10 mg permanently . I went for a steroid injection yesterday I am now down to 6mg and hoping the pain will ease, when you stop steroids there are lots of side effects, can feel very tired , steroids boost your glands you feel you have more energy. I think do what feels right for you , All the best for 2025 🙏