There seems little instruction or information anywhere about approaching zero prednisone. So thought I would write this. It is my interpretation of information gleaned from people and reading. If this is old news or just plain boring dont read it!
It seems that prednisone takes over from adrenal glands that naturally produce a 'cortisol' type anti inflammatory substance. When dropping down the prednisone the adrenal glands have to step up cortisol production from reduced or no production to counter act the inflammation (pain).
A nurse told me it is not uncommon to take one year to get to zero prednisone - depending on length of time taking Prednisone plus host of other factors. In some cases can take 4 years and in extremely rare cases adrenal glands are unable to produce any 'cortisol' at all.
Been on Prednisone (plus mtx & plaquenel) for 18 months starting at 25mg/daily. Had reduced Prednisone to 7.5mg daily. Told by Rheumatologist to get to zero P. over a 6 week period by dropping 2.5mg each 2 weeks. It has taken 4 months to get down to 1.5 mg/daily. With each drop down pains came back. I would go back up a little and then drop down again till no pains returned, sometimes doing the up/down thing a few times. I eventually got to 1mg daily and then hit 0 prednisone for 2 days until pains surged back along with very negative psychological feelings. So now back to 1.5mg/daily and feeling good. My next step down will be very small reductions over a longer period of time. Cant wait to hit zero but I need to be very patient and diligent.
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tristin
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Hi trisrin, I was continually on prednisolone tablets for 3yrs at one point, reducing them to suit like yourself up and down, I had no problems or side effects reducing them at all, just have to play it by ear and listen to your body. 🤗 X
That is true, depending on high doses for long periods; in those cases, producing natural cortisol again may not be reinstated. They should be monitored closely to discern if adrenals are kicking in.
The longest I had prednisolone for was an eight week period, going from 4 pills a day to zero, as you describe ie reducing by one pill after two weeks.
I was on 60 for a month then 50 then 40 then 30 etc untill down now to 5 and will stay on it but that was because of kidney failure the 60 did not as hoped kicked my kidneys into working I know to get down to 0 from 5 its 4 for a month then 3 then 1 but as the RA consultant advises to stay at 5 thats what I'll do. I also have shingles at the moment its awful so on Pregagablin too as well as other stuff. I feel like azombie but its keeping the pain under control.
I've been down to 5 mgs, but had to up prednisilone to 20mgs due to coming off MTX. (Highest dose 60 mgs day at one time). Unfortunately the new biologic doesn't seem to be working for me (? Yet 🤞) so I've taken it upon myself to increase to 20mgs from 10 mgs. I'll ring rheumatology next week and tell them what I've done.
I've been given a taper programme for when the biologics begin working, interesting to hear your experience. Thanks.
I have been on prednisolone for just over 35 years, I have tried many, many times to get to zero and each time I have experienced massive flare ups. I have both Rheumatoid Arthritis and Lupus. I take 5mg a day and my Rheumy has decided that it is not worth putting me through the pain and distress of flaring up so I will remain on 5mg. Apart from some thinning of the skin I haven’t experienced any other side effects.
Thanks for sharing experiences everyone, all very helpful. Interesting that some people can withdraw from Prednisone without any issues but more difficult for others.
I am trying to read up on what I can do to return kidneys/adrenal gland to normal function. So far diet changes ie Mediterranean style - more fish, vegetables fruit etc. I will have a look at kidney cleansing foods and supplements. Has anybody any experiences with kidney function impeovement?
Yeah I tried apple cider vinegar with the mother for a while even though I had only a teaspoon in warm water a glass full I found after a week I was struggling to pee. Shame I had to stop it because I found it was very good for giving me some energy. Like most things works for some but not for me unfortunately.
Hi again I’m sorry it had that affect that’s a real new one on me
But I tried Tumeric after reading and being told by friends how wonderful it is for pain,it did just the opposite for me I had a week of agonising misery so much pain I spent a lot of that week in bed
Just goes to show these things don’t suit everyone
Morning I have been on prednisone for a year the highest dose being 20mg. I managed to get down to 0.5mg daily then tried every other day, then every 3rd day however I can feel that I am flaring in my knees and hands again. I am going to start taking 0.5mg daily again to see if that helps. I take meth hydrox and recently a biological. It’s a roller coaster and one that I am sure will continue. 😊
Your post has really helped as I have been trying to get down to 0 since last Oct. every time I get to 0 I flare badly and have to start on again. As recently as last week I was off then had to go back to 30 mg a day as I could not move with spine problems. I am waiting until ending august to see RA specialist so I can start another biological as mine is not working. At least I know now it’s common with the steroids. Thanks again.
Very happy it was helpful. I think the closer to Zero P I get the slower i will reduce. Going to try dropping down 0.5 on one day only once a week. My Rheumy does not seem to understand my need for slow reduction.
Thanks pd118 this last bit of getting to zero is tricky. I read somewhere that the rheumatologists in USA sometimes change the medication when at the 0.5 but need to follow it up with next Rheumy appointment in 4 weeks time.
I have been playing the game of getting off Pred for about 6 years now. I am currently at 1.5mg, so hopefully 2 more drops to go. My highest dose was 30mg.
My tipping point was always 5.5mg Pred. Within about 4 days of hitting 5.5 I'd flare big time. Then my Pred would be pushed back up to 20mg and my meds would be adjusted and off I went again. Finally a dose of 20mg MTX allowed me to get beyond 5.5mg Pred.
My consultant told me that when I hit around 3.5/3mg Pred that I would feel a lot more energetic and boy oh boy did I. The day my body started making it's own cortisol again was AMAZING!! I spent 4 hours deep cleaning the kitchen, danced around the living room, went out to dinner with a friend and came back home at 1am. The next day I did not pay a price for 'living the dream'. I'll never forget that day!
So it's 3 cheers for MTX - my wonder drug and hopefully not too long before I can say bye bye to Pred.
Thanks for info. I will start the journey to zero soon since a scan showed i have osteoporosis. Doc wants me to start on planquenil so am having base eye exam on weds. Currently at 6 mg. Pred. Good luck to you!
Prednisone is the only drug I chose to stay (as opposed to any DMARDs or Biologics). I was on it for about a year and a half for my RA. I tapered as I saw fit by 0.5mg. Doctor's and others thought this was ridiculous, but I could care less. I would only go down when I felt good enough to, and if I felt a flare, I would wait until it subsided and neutalized for a few days before going down 0.5mg again. Only YOU know what you are feeling and the severity of the pain!
Then unfortunately last year, around mid April, I got an insane rash, and was given 60mgs of pred to take for 3 days, then drop 10 for 3 days, and so on. I was so afraid it was going to ruin all my progress because at that point I had gotten to 7mg prior to the rash. I guess it all worked out fine. I think when I got to around 10 mg, I did the 0.5mg taper again as I saw fit for myself. Listen to your body and do what you feel you need to do. Best wishes!
Hi Jesnaskah, I think the final push towards Zero P has a problem with percentages. Dropping 0.5 mg when at 10mg per day is relatively small percentage. When dropping 0.5mg when say at 2mg/daily is a huge drop. Please see my post further along as it may be of assistance. Yes totally agree must listen to ones own body.
One of the team at work her hubby slipped and spent past 3 week limping and when she convinced him to go to hospital he had a broken ankle. Her words today was RA makes you ignore or cope with severe pain in a different way to the rest of us....I replied it might be the drugs masking everything to a point.
She did apologise as she walked out the room with a ' sorry that is probably not a great story for someone who has just found out they have RA'
I’m finding coming off prednisone very difficult too. My highest dose was only 10mg. Down to 5mg daily currently but I know when it’s reduced to 5 every other day for a few weeks I will go back to square one. If I had the choice I would stay on it but I know it’s probably not an option for me. Difficult but you know your body best.
I have been on pred. for about 8 months which started with 50 mgs and quickly went to 20 mgs. While the Dmards get sorted out I have been told to get off the pred. but the taper plan was not tapered enough (5mgs a week). Therefore the up and down (yo-yo) effect for months. Now that I've done some research on the PMR site I understand the tapering that works. So, now 1 mg every 2 weeks and if tolerated until I get to 10. Apparently our bodies produce around 7 per day when the kidneys haven't been shut down because of the pred. presence.
My plan at 10 is to go down by no more than 10% every 2 weeks or month, depending, and start giving my adrenals a bit of a poke to start up. Apparently there's no guarantee that they will start up. If not, then pred. for life which is okay at below 10 since we'd have about that with normal production.
Also on the PMR forum is the DSNS method of taper for the stubborn adrenals. Means dead slow, nearly stopped. Those folks are experts in pred. because it is the only drug used for PMR which is another RD of the same family as RA. Wonderfully though, PMR is self-limiting, unlike RA which is a life sentence. I have both, apparently.
In my case, I took Prednisolone 2.5 mg for about 6 months. When mtx started to work on me, the pain reduced. Then my rheumy told me to slowly stop Prednisolone. I was doing very well during the process. I was finally declared remission after about 1 1/2 of mtx and Arava, now my mtx has been reduced to 7.5 mg and Arava has been maintained for 20 mg. No issue so far after I stopped prednisolone.
I have been on 10 mg for 7 years. Trying to come off it as biologic helping. Told to reduce 1mg a month.started reducing by 1/2mg every other day and that was a month ago as those days am in so much pain again.So I have fairly pain free day every other day upto now
The PMR site as Nanna 71 says has some great examples of how to drop down very slowly. As others have said before it is the percentage drop that is important. So dropping from 1mg/day to 0.5mg/day is a huge drop of 50%. But dropping say from 1mg/daily to 0.5mg on one day of the week is only a drop of around 7%. If drop from 1mg/daily to 0.5mg only once in two weeks it is a drop of 3.5%. Hope I got the maths right!
I have been trying to reduce from 20, 25 & even 30mg over the past year! I have been on almost every single DMARD and biological to help end this endless flaring in wrists since this whole thing started back in 2017!! Nothing to date has worked even when my RA doctor brought out the big guns...IV Infusion!
He knows I am a mess from the prednisone but offers no other alternatives! Just keeps saying I am unique and pumping me with even more junk!
Every time I tried to reduce even 1 mg the wrist pain would come back with a vengeance and then back up on the prednisone.
Because nothing has worked and needed to be on all this prednisone I developed Cushingoid!
I hate it!! I do not even look like myself anymore. The RA dr says be patient, be patient, you are unique as he continues his by the book treatments on me. Really? If I am so unique why can't he think outside the box in his treatments for me?
Therefore, I had to take matters into my own hands. Did tons of medical research & listened to personal stories on blogs like this.
Because no RA drug has helped, I researched on real CBD, got my New York State card to be able to buy it legally and started taking it about 3 months ago 3 times a day (.4) along with Tripterygium wilfordii (thunder god vine) & motrin, which by the way I had to
ASK my RA dr to prescribe the motrin!! He never even offered a simple Motrin in the beginning. Maybe my cortisol levels would not be so messed up today if he did!
When I go back to see him next week for my supposedly next IV Infusion I am going to ask to stop it all and try the long term antibiotic treatment of minocycline or doxycycline (100 mg twice daily). Why not? Nothing else has worked yet!!
My body simply will not accept these biologicals & I have very bad side effects from them. (Had to have Sinus surgery Aug 30th due to FUNGUS growing in them, w/general anesthesia and the whole operating room experience)! Yes fungus caused by a biological & a side effect!
Plus, how the heck can someone be in a CONSTANT, everyday of the week flare for almost a year even when taking biologicals?
Anyway, I swear my new protocol is working better than any RA drug! I was able to finally reduce to 10mg this past week! I still feel the pain creeping back up when the prednisone starts to wear off but the 10mg seems to be holding it at bay when I do take the next dose!
I will try to reduce to 9mg in 10 more days and see what happens.
If my RA doctor will not help me discover new ways to treat me, since his by the book methods have failed miserably, then it may be time to say, see ya!
Congratulations! I am sooo happy for you!
Prednisone is a great drug for short term until the RA medications start to work, but in my case since RA drugs are not working, I had to find alternative ways to get it reduced because of the Very bad side effects it along with the added biologicals has done to my body.
Sorry for delayed reply 'have been away'. No where really just 'away'. You raise many points and sorry nothing has worked however you are down to 10 mg Prednizone from 30. That is a giant leapt forward. I try and treat myself with positives success when I can.
I always think if treatment I am getting is not working and nothing different is forthcoming then I should try someone else. Everybody has limitations including Doctors. Is your Dr a Reumatoid specialist or a aGP? I would want to see a RA Specialist who have vast knowledge and experience with RA.
I would be interested to know the rational behind antibiotics? As RA I from my extremely limited knowledge is not an infection? Anything is possible everybody is different.a such a complex issue. Has the specialist suggested that your RA is caused by an infection?
The drop from 10mg to 9mg is an immediate drop of 10%. This is too bigger drop for me.
Hope you are still improving.
Had potatoes for 3 evening meals -pains and numbness returned. Potatoes are easily to get to 0%!
8 months ago I posted this re approaching Zero prednisone as I was surprised that it was difficult and was taking such a long time. My RA specialist thought I could do it in 6 weeks! Today is day 3 of ZERO prednizone. Fingers crossed. I followed the formulae somebody referred me to in this forum of reducing by small percentages rather than numbers. Seems to have got me to ZERO.
Day 5 without prednisone. Small pains coming back. Problem is the % drop. 0.5mg to 0 is 100% drop. too much. So going back to 1/2 mg to stabilise then down to 0.25gm per day. Will keep you the 100s of people reading this updated. Wonder if any body will read this. Anyway its on the record and my way of making history - LOL.
8 months on from last post - still in zero prednizone plus plaquenil dailly and MTX0.5 gram 2x a week. All good. My concern was if there was an affect on andrenal gland as hard to generate energy. How do you separate affects of ageing from other factors. Any way just wanted to upgrade incase it is of interest to someone in the future.
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