Coming off Prednisolone

[14penny]

Hi could anyone advise how long it takes to come off Prednisolone as I am trying really hard as I think it has caused my Osteoporosis and I am now taking Alandronic Acid which is making me sick so I am trying to sort out this mess myself as calcium is high as well and docs don't know why. Hope someone has someone had similar experience 14penny

[KittyJ]

Hi 14penny, I finally came off pred earlier this year after being on it for 28 years and it took me 9 months tapering very slowly. In the end the only way that worked for me (I’d tried many times to taper before) was reducing 0.5mg a month. I think it’s different for everyone depending how long they have been on it. Do talk to your rheumy about tapering (if you haven’t already ) I hope you manage to get there 😊

[14penny in reply to KittyJ]

Thanks KittyJ I have reduced to 5mg a day and next month will cut down to 2.5 and so on. Also I am stopping taking Anadronic Acid for Osteoporosis as the research I have done states that it is a really nasty drug causing all sorts of unpleasant problems so I think I would like to be drug free and just take more vitamins. Thanks again and good luck 14penny

[KittyJ in reply to 14penny]

I was stuck on 5mg for a long time, it was only when I started on biologics that I could taper down completely. Let us know how you get on.

[14penny in reply to KittyJ]

thanks Kitty I think I will try and get to see rheumy before my next appointment as the pain while coming off prednisolone is not good think I am doing it too quickly. Nice to see you have sorted it out Good Luck . 14penny

[KittyJ in reply to 14penny]

2.5mg is a drop of 50% so quite a big drop, I did 0.5mg a month but a good idea to check with your rheumy or nurse. You will get there and it is so good to be off them.

[AgedCrone in reply to KittyJ]

Well done KittyJ......!

[KittyJ in reply to AgedCrone]

Thank you AC 😊

[LesBev]

Hi 14penny. I’m in the same situation but my rheumy said if you have been on prednisone years it has to be a slow process weaning off. I reduce 0.5mg a month and so far so good. To go from 5mg to 2.5mg in one go sounds a big jump but your doctor is who to check with.

I too can only tolerate calcium supplements and just hope it’s enough.

RA is a hard battle and none of my friends or family really get the whole picture, that’s why this site, and the wonderful people on it, are a godsend. Take care. Lx

[14penny in reply to LesBev]

Thanks LesBev I think now maybe I am trying to get off them too quickly so will ask my rheumy for a lower dose to take as I only have 5 or 2.5 m of the tablets but I think the prednisolone has caused osteoporosis and am glad you managed to get off the stuff it really is hard to know what to do for the best and the rheumy team I am under are not always available. Good luck to you. 14penny

[Dodo1943]

It took me 6 months to wean off Prednisolone, reducing by 1mg per month. I instigated the process by requesting 1mg tablets and simultaneously increased Methotrexate to 20mg from 15. The process was slow but sure and once successfully off I was then able to return to 15mg MTX in 2 stages by 2.5 mg reductions. I’ve been in clinical remission for 2 years.

Good luck!

[14penny in reply to Dodo1943]

This gives me hope and am speaking to doc tomorrow and will bw asking for smaller doses so I can come off slowly. Thanks and Good Luck 14penny

[Jillyanne]

Hi, I was on 5mg a day of pred and it took me 6 months this to get off it , it’s really hard but you have to persevere

I was also on the Ala dronic acid and took myself off that aswell and just took a calcium liquid from boots

[14penny in reply to Jillyanne]

Hi thanks for reply I am going to stop Alandronic Acid this week as getting horrible side effects and I don't think it does a lot of good anyway but as you say coming of Prednisolone slowly is the key and I am speaking to the doc tomorrow so he can give me a lower dose so I can do this thanks for your reply and good luck| 14penny

[Jillyanne in reply to 14penny]

The way I did it was

1st month : 1 day 5mg 2 day 4 mg 3rd day 5 mg 4th day 4 mg and so on

2nd month : I day 4mg 2nd day 3 mg 3rd day 4 mg and so on

That was the only way I could get off them

Hope you understand this and good luck

[14penny in reply to Jillyanne]

Thank you for that Jillyanne, I will try this as it sounds easy to follow, so glad you got off of them and hope you feel well, 14penny

[lilyak]

TApering down from prednisone is entirely dependent on your dose, and how long you have been taking it. Dropping by 5mg is entirely ok, if you've been on a high dose. It's when you start getting down to 10mg that you need to slow down, even then if it hasn't been long term, you may be able to tolerate 2.5mg drops. It would be more usual to drop by 1mg per week, if it hasn't been a long course. If you've been on it long term, maybe it will need to be 1mg per month. TRUST your doctor! Your dose and the length of time youve been on prednisone is highly individual, do not be concerned by other people's tapering schedule. Its not at all relevant to your schedule. If you're concerned, ask your doctor, but don't compare your dose reductions with anyone else's. It really makes no sense. Just continue as your doctor has advised.

[14penny in reply to lilyak]

Thank you lilyak, Thanks for reply it all makes a lot of sense and I am going to make another appointment with my rheumy to get a smaller dose so I can come off them a lot slower. This site is really good as without it you would feel so alone with it all

[Recorder500L]

Our bodies are all so very different in what they will contend with. I have been on prednisolone for about 20 years, only 5mg for about 10 years. I am now on 4mg a day and I am reducing it 1mg a month. I am hoping to be on 3mg by early December when I visit have my next appointment with the Consultant. Gosh, it is a slow journey, check with your rheumy nurse for guidelines. My daughter-in-law who is a pharmacist told to try 5mg one day then 4mg the next for a week to let the body get used to it. Take Care.

[14penny in reply to Recorder500L]

Good Luck with coming off them I will be asking dr for smaller doses to come off them a lot slower as I only have 2,5 tablets and take two a day (for the last 5 yrs) but it will be great to eventually get off them 14penny

[Hidden]

I was taking 80mg a day as treatment for Rheumatoid Vasculitis. Also 5 infusions of 1 gram Methylpred. After 5 years I'm now weaned down to 3mg daily, but suffering. But I'll get there.

[14penny in reply to Hidden]

Good Luck with coming off the pills and I am going to ask for a lower dose as prednisolone has given me osteoporosis so that's why I want to stop them its such a long hard struggle as no one likes pain. 14penny

[mistymeana]

There really is no one size fits all as everyone responds differently. Do make sure you do it under medical guidance as they may need to check your body is able to take over and start producing natural steroids. Also, please don't give up on osteoporosis meds altogether. It's worth talking to your GP/consultant if you're not tolerating Alendronic Acid (emphasise how ill it makes you feel and not your concerns about possible side-effects). There is a twice-yearly injection you could have called Denosumab which I don't think has much in the way of side-effects.

[14penny in reply to mistymeana]

Thanks for your reply but I have read so much about alendronic acid that I do not want to take the risk so will be speaking to doc tomorrow to see what he says and go from there but I have had so many good replies from everyone on this site its really nice to talk about things and everyones commentson what they have achieved through perseverance with the drugs Good Luck 14penny

[Troygirl]

I have been on many different kinds of biologicals.

None of them has worked in helping me reduce the prednisone!! Now have a condition called Cushingoid from being on so much prednisone for almost a year!!

Time to make my RA dr think outside the box in treating me!

I am tired of not looking like myself going on a year!!

[14penny in reply to Troygirl]

So sorry to hear that I have been on them for 5yrs and am going to rheumy to get a smaller dose to try and get off these pills from hell| just hope it works Take care and thanks for your reply 14penny

[medway-lady]

ITs been a long haul down from 60mcg to zero, but I'm no hero! down for 50a month then 40 etc down to 1o then 5 then 4 to 1 a month. Second time Ive done this as have them for kidney failure too. I prefer injuections for RA but nephrologist likes pills. I have Ad Cal to prvent Oestoporosis and in total been on Prednisolone for a year. Had a dexa scan last week it was fine before the nect stage of RA meds. Weight loss is slow byt gradual so don't give up. x

[14penny]

Thanks for your reply, glad you have managed to reduce them so well but I don't seem to get much advice on the prednisolone as I have been on them for 5 years now and just found out I have osteoporosis I was put on these pills when ill in hospital and trusted they were ok but was not told what they were so just kept taking them thinking they were ok I just wish I knew the damage they could do I will now arrange to see my rheumy to get a lower dose of the pill and come off them slowly and am stopping the Alandronic Acid as that gives really nasty side effects I think someone is making a lot of money out of giving pills out and not advising patients when to come off of them. Good Luck to you as you seem to have a lot of sensible advice. Take care 14penny