Hi all, hope everyone is keeping well during these horrible times.
My rheumy has asked me to start a taper on my prednisolone tablets. I've been taking prednisolone since 2016, it varies in the dose amount higher or lower based on my flares, but I've never ever been able to get down past 5mg.
I'm currently down to 3.5mg and I'm am really really flaring up, but mostly I feel unwell in myself, a little faint. I'm assuming this is down to the taper and not the mtx or imraldi however I don't know.
Has anyone struggled with tapering off. I was doing OK before I started doing taper
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Ouchyjenna
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Yes I never managed below 5mg daily unfortunately , others can.i think maybe talking to the team for advice or maybe lowering it slightly weekly would help. You can't go too fast .
I’m only just starting my taper from 7mg and the consultant told me only to attempt to drop by a maximum of 1mg per month so my body has time to adjust.
As you have been taking Prednisolone for a long time maybe go even slower than that. I do recall reading that some people have succeeded by alternating dosages. I hope someone who found that worked for them will respond to you. Good luck with it. 🤞🏻
Hi I managed to lower my prednisone and I now don’t take ant at all . I had taken it for nearly 5 years. I tried to follow what my rheumatologist told me to do, but found I was having flares. I did some research and an article I read said it was more my body’s reaction to reducing the steroids. I started reducing my steroids much more slowly over a much longer time period and it worked for me. I wish I had kept the article so I could share it .
I struggled and tried many times over the years to come off long term steroids. I eventually managed it but very, very slowly. I was stuck at 5 mg for years and I think being out on a biologic finally helped me. You don’t say what you are tapering by but I’d look at that and see if you can adjust it. It took me 9 months to be taper so it can take a while but you will get there in the end.
Hi Ouchjenna. I was only on 7.5 mg (for eight months) but my rheumy doctor told me to reduce by 1 mg per month, I did get reaction on each reduction but it only lasted four or five days and settled. I have read that some have reduced by 0.5 mg and had more success.
Yes from 60mcg to 0 but it took 2 goes and over a good few months down by 5mcg a month then by 1's to 0. It depends on how long you've been taking them and in my case it was over 3 months so longer on it its longer to come down. Its a case of slowly slowly slowly.
Thanks all. I decided to take an extra mg earlier because I feel so so dizzy and lightheaded which helped a little. I will call the advice line tomorrow because I really don't like how I'm feeling. Maybe I'm Doing it too fast. I just want to stop taking them now, my body is clearly very reliant
Took me three attempts. I’d also been on them some time. I finally succeeded after speaking to a doc from America online. He pointed out that it’s not the dose reduction that is important (Mg dose), but the percentage it’s reduced by and he said it should never be more than 20% a month. Made sense to me and it worked. So for example. Taking 5mg one month and 2.5 mg the next is far too fast as that’s 50%. And likewise, 2mg to 1mg. Makes it painfully slow, but third attempt I was clear. That was in 2018 and not touched them since.
I was told to taper off one tablet per month for six months. Felt very unwell to begin with but was told that was ok. Had spots come up on the palms of my hands and was told it was doing more damage than good. My response was REALLY? Much better since being off the drug went on humira instead. Good luck 😉
I have been on preds for 3 years it's hard to taper of, I am also on 25mg mtx, down to 1 at present which seems to be ok, but I had a lot of trouble going from 4 to 3 it took 6 weeks but I got there in the end. My hands are a bit stiff and my ankle still gives out but I think that's just ra. I went to bronceactsis clinic last week and he said I was doing well and keep going then when I really need them they will work better. Hope you feel better soon. Keep up the good work.
I have tried three times to come off prednisolone 5mg. Each time nice and slowly, feeling bad each time I reduced a dose for about five days, so I did it every two weeks. The worst was 1mg to nothing, did it alternate days. Each time I got down to nothing and each time I had a flare after a couple of weeks and was put back on it. After that the consultant told me to stay on 5mg as the risks outweighed the benefits.
Slowly, slowly, slowly. You've been on it a long time. I took it for a much shorter time - 8 months in total, half of which was tapering down from 5mg. A useful tip from the pharmacist was to do 2 weeks alternating 5mg and 4 mg daily, then 2 weeks on 4mg, 2 weeks alternating 4mg and 3mg and so on. Possibly you might need to do 4 weeks on each dose rather than 2 as your body will be more used to depending on it.
It seems to be very common for the last bit of tapering to be difficult and take much more time than the early reduction.
Hi,Ouchyjenna, l am coming down off my prednisolone and feel very faint and dizzy at times every day, it's not fun at all. Not feeling well at all, very tried. Hope you feel better soon.
Been on pred for 7 years I too can nit get down below 5 if I do im in a lot of pain and feel very ill. My consultant said its a maintenance dose so I can stay on it x
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