NRAS
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Prednisone Instructions

I had a root canal done this week and my rheumatologist was upset with me for not calling her first. Turns out, I was supposed to skip my Enbrel injection and stop my other med for a week before the procedure. She now has me taking prednisone and antibiotics during healing. Her instructions with the steroids (5mg each) read—-3 tablets per day for one week, 2 tablets per day for one week, then stop. I’ve never taken so much and then just stopped, but always weaned them down. I’m not asking for medical advice, but just your experiences—Have you ever just stopped after taking that amount?

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I’ve had 5 root canals over the last 2-3 years and never stopped Humira or Enbrel for any of them. And never got infection either. Can’t help you with the steroids as I take them all the time now since being diagnosed with Adrenal Insufficiency, but years ago i would have tapered down to 1 per day. However, I’ve never known to taper if used for less than 4 weeks.

Clemmie

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Interesting! Thank you for the info!

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Hi please may I ask what adrenal insufficiency is please and is it caused by being on steroids for a long time?

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Adrenal insufficiency is when your adrenal glands don't produce enough hormones, and causes all sorts of problems from mild to extremely serious.

Being on steroids doesn't cause adrenal insufficiency, as the steroids are mimicking the cortisol that your adrenal glands produce. But the problem is that if you are on high doses of steroids for a long time then your adrenal glands stop producing hormones themselves.

So if you stop taking the steroids suddenly it can cause an adrenal crisis which can be very serious. I think high doses means well over 10mg a day for periods longer than 3 months...and in those situations you must wean yourself off the steroids slowly and carefully.

And if you are on high, high doss for a long, long time then your adrenal glands may never recover, which is called adrenal insufficiency, so you have to take tablets for the rest of your life.

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Thank you for the reply .. what would the symptoms be if you had this?

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Hugely variable....in the short term anything from feeling a bit off colour and tired to loosing consciousness, vomiting and low blood pressure. And in the long term steroids can do other nasty things.

But like everything else, always discuss with a doctor if you don't feel well. And if you feel it's serious then call 111

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Thank you

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For short courses of oral steroids it is normally OK to start and stop quickly. I have had a couple of short courses for holidays but usually only 3 days at each level - 3 at 20 then 3 at 15, 3 at 10 and 3 at 5 although I still find straight from 5 difficult so usually try and do couple days of 3mg and then 2mg before stopping.

Just be aware if things are not healing or feel strange with your mouth then contact your dentist.

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Yes, I’ve done it for 3 days and then stopped but never longer without weaning. I guess she knows her stuff, but maybe I’ll take the last couple of days and spread them out just to be sure. Thanks for the advice.

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I just had dental surgery the end of April and had to stop Methotrexate one week before and one week after! I don’t know about Prednisone though as I don’t take it!

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As it's your Rheumy who's given you the tapering plan you should do just as she's instructed. It's low dose & a short course so quite normal to stop abruptly. It can be different depending on circumstances but as a rule anything shorter than a month doesn't usually need tapering, you're only taking them a fortnight. I used to have regular monthly courses, anything from 5 to 20mg, to bring down flares in the early months & never needed a tapering plan.

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Thank you! That makes me feel much better. I do trust my doctor as much as any other but it is nice to have it confirmed.

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Just as a comparison Deb, seeing Jesnaskah's reply, she has been on prednisolone 10 months so quite different needs to yours in coming off it. Her situation requires careful tapering as the adrenal glands need to take time to take over their function again, producing cortisol, the pred has been doing this & why a taper is necessary, so she doesn't cause adrenal insufficiency. Similarly I've been on steroids a relatively long time, 5 years, only low dose, currently 2mg, but when I start tapering it will be a very slow one.

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That makes sense. Thanks again!

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Please be very careful with the Pred. My Rheumy had me on 2mg daily for a few years---thirty years ago. Just recently, through an MRI, my new rheumy found out I have spinal stenosis, and multi-level spondylitis. After much research, he discovered it was from "history of steroid use". I am now 70 years old, I walk stooped over, am totally round-shouldered, and use a walker constantly. It's just a matter of time until a wheelchair comes into the picture, also have developed "dowager's hump" and very soon will have my chin permanently on my chest---all this from Prednisone!!! Please try to get off it--I blame my doctor for all of this!

Sicofpain

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Yet you still take pred when you flare. You see without it I also flare, even at such a low dose, though it's only been more recently I've been prescribed pred, I'd previously been taking deflazacort. Believe me I have asked many times to come off it but I have the additional problem of having tried 3 DMARDs & the only one I've been able to remain on any length of time is MTX. Because of disease activity I'm about to start a higher dose, one which historically sends my LFT's soaring, it remains to be seen if it happens as it has before. I don't know if I would qualify for anti-tnf's but my Rheumy isn't considering them so for the moment, or until Dec when I see my Rheumy again, it leaves me with MTX & the support of pred. I have DEXA scams biennially & have remained osteopenic/osteoporotic for 5 years, the last scan giving improved frax scores. So, as my 10 year fracture risk has reduced I can only presume that is a positive. I am aware it's not preferable to use them long term for the very reasons you have & are unfortunately experiencing, but for now I have little choice. I do hope you're not in much pain, or are able to hold off needing to use a wheelchair for a while yet. It's a bad situation made worse, the options aren't there for me just now though thank you for your concern.

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I’m so sorry to hear of your problems caused by steroids. When I moved recently, I got a new rheumatologist who stopped my regular use of them. She said they seem like they help you, but they are not good for you in the long term. She will only give them for very short times. My previous dr was giving me shots of them every two months. I am grateful to now have a more careful doctor who thinks about the future. Thank you for your advice. You will be in my prayers. ❤️

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Every time I’ve weaned down with predisolone. I’m now on 3 one day 2 the next . Consultant said always wean down to 1 a day then 1 every other day for 2 weeks x

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Thank you for sharing your experiences!

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I've had a different experience...I needed to wean VERY SLOWLY...but that was my own choice and all my doctors made/make fun of me for it, except my new rheumy. She thinks I have a good plan, especially since it has been working for me. I have been on Prednisone since last July as I've experimented with 3 different DMARDS simultaneously. I decided to stop DMARDS last November and stay with pred, which was around 20mg at the time. I've weaned myself to 3.5 currently, and that is the only med Im taking currently for my RA, besides LDN.

I would lower it based on how i felt. But then again, I had enough pills to be able to do that. So having enough Pred be is a factor as well.

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Hello

Have you found the LDN effective?

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Hi!

I didn't think it was doing anything... But I stopped it one night... And whoa did I feel the difference the next day. So I'd say yes! It is making a difference for me and I'm ecstatic that it's non toxic. I'm currently on 3mg. I'm going to soon bump it up to 4.5mg. I suggest you try it, seeing that it's very tolerable and you have nothing to lose. My doctors , GP & rheumy, didn't think it would help, but still allowed me to have it. Good luck!

Jess

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Thanks for the info. My dr only gives steroids as a stop gap measure when flaring or between meds so she is quite stingy with how many she’ll order.

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I have had a number of short course of pred....from a couple of weeks to a month. Often, like you, with a higher dose for the first week/10 days. I have never been told to wean off them, but just stop.

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Thank you for the info. I feel so much better about it now.

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Hi dbeststdeb - Yes, I frequently go from 10 to zero, but if you are taking them for a week, it seems like it would be more usual to drop to 5 per day for several days. You can tell by how you feel. When I forgot to take them on a high dose, I would get very sleepy..

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I’ll keep that in mind. My body tends to react strongly to everything so I’ll probably know if I need a few more to taper or not. Thanks for your thoughts. :)

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Hi. This is very helpful to read. Thank you.

When I was on high dose ie 30mg of prednisalone for 2 weeks then 20mg for 2 weeks then 10mg for 2 weeks then nothing it has been fine stopping. That has happened a number of times over past 18 months. Now im on 3 DMARDS plus 4 to 6 hourly NISAiDS Rheumy says score not bad enough for biologicals, but I was still only getting about 4 hours a day on a good day when I could function. So im now on 15mg of Pred for 2 weeks 10mg 2 weeks 7.5mg 2 weeks then 5mg until I see him again in July. Im just about to go down to 7.5mg yesterday but I realise I only have 5mg tablets. I really feel like im me again for the first time since I collapsed with RD 18 months ago. Im 60, so if the side effects take a few decades to kick in Im not bothered. I should research as im not sure how many years it takes. I was very sorry to read the above post on side affects though. Im just grateful to get my life back....mostly anyway.

So as far as stopping from 10mg I have always been ok. All the best with it.

Ps i have also had steroid injections into some joints and my btm.

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Yes, I loved my steroids too, and at first they were like magic. When I moved and my new dr refused to give me shots, I was devastated, but she said they make you feel that you are better when you really aren’t, besides all of the bad effects for your bones and organs. She worked with me on the meds though and got me on Enbrel. It helps but I still miss the days when I felt well and energetic. I am 60 also and that doesn’t seem to matter to her in her opinion about the steroids. She worries about my bones more than I do. For what it’s worth, she has also had me clean up my diet quite a lot—-whole foods and little to nothing from a package including bread and taking turmeric and probiotic supplements.

I know it’s probably the last thing in your mind, but be careful of your stomach lining with all of the meds you are on. You don’t want to add nasty acid reflux to your list of problems. Best wishes to you and thanks for the info. :)

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Yeah - Prednisone is the drug I love to hate. It makes me feel so amazing, other than stopping me from sleeping. I was on it for three years when I was first diagnosed with asthma. I would do three days of each 60, 50, 40, etc. down to 10. I would get to 10 and the reaction would throw me in the ER at least every other weekend and in the hospital for five days once a month. I put on 70 pounds which I have never been able to lose, no matter how hard I try. It was the only way I could breathe. I've noticed too that my lips still do the Angelina Jolie thing even with just one day of 10 mgs... I finally changed jobs and that was the last time I was in the ER OR the hospital since 1994 due to asthma. Amazing how much a job can affect you, huh? At 60, I don't think I would worry much about the side effects unless you are on it full time for quite a while straight. Just pay close attention to what your body is doing with it (other than not hurting..)_ =)

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Yes, it is definitely a double edged sword. I too gained weight on them that doesn’t budge. But of course I’m not active like I used to be either. Even treated so I can get through my days, I’m definitely not the person I once was. I tried shopping with my daughter just last weekend and spent the whole day looking for a place to sit. The loss of the fun times in my life hurts as much as the RA.

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I hear you Deb... These diseases hit many of us in a similar manner, and honestly few of us are our "old" selves (or maybe we are - but some of it probably is age after all..) For me, I have gotten rid of most of the inflammation, and the deformation, but I still have flares, and some (probably non-related) pain and the fatigue. I can go pretty well for a while, but yes, frequent rests are a must and nothing to feel bad about. Look at it this way... some folks are bed or wheelchair bound.. If you can go shopping with your daughter, you are ahead of the game.. You can still have fun times if you pace yourself, and surround yourself with those who care about you to have fun with.. Here's sending fun thoughts and gentle hugs your way..

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Oh I know that I am one of the lucky ones. Didn’t mean to “cry in my beer” so to speak. I feel guilty sometimes that I am able to have great medical care and Enbrel so that I can spend my days caring for my grand babies and still hobble home afterward. Lol. You are right, as we age, everyone loses function to some degree or another. I guess I was just spoiled to be able to stay so active for so long. Yes, it could definitely be worse for me. Just reading these comments shows that. Thanks for the encouragement! :)

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Nah - You were fine... I have to remind myself now and then too =)

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I took 4 a day for a week, then three, then two, then one and stopped. I read that while on MTX. I should use an electric shaver and not a razor and a soft bristled toothbrush. I’m guessing because of bleeding problems. Also that all docs should know what meds you’re on before treating you for anything. Sounds like you’re doing ok though and that’s good. We all react differently. Hate root canals!

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It’s because the possibility of infection is high with a supressed immune system. My Enbrel instructions say the same thing about shaving. The dr said anything that makes you bleed can be a source of infection and to avoid it until I speak with her. I doubt she wants me to call before I shave my legs though so I did switch to electric, just to be safe. I stopped eating raw oysters too because of the warning about people with a compromised immune system.

I did tell the oral surgeon about my meds but he was unimpressed. The dr said they just don’t know what they don’t know. :)

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Thank you. Good to be informed as much as possible.

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Hi if i am having a flare, then its first dose 30mg reducing by 5mg per day, i have stopped my daily 5mg as it was causing i believe mood swings, which we thought far outweigh the benefits!!! This isn't a suitable idea for others,but it works for me.

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I believe that’s the normal course of steroids and why I asked because that’s been my experience too—-to keep reducing down to none. It does appear that there are many acceptable ways though, judging by the comments. Thanks for sharing.

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I need this so much!!

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I did too! Such good info available from the people in this group. I’m grateful also because it is a place to be where people understand what you are going through.

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