I know that there is a lot of discussion on tapering prednisone, and that's where my problem lies. I've been on prednisone since Nov 2012 when I had c-diff. I was put on 20mg of prd until Jan 2013 when I lost the hearing in my right ear. Went to an ENT and he prescribed 80mg of prd for 3 weeks. Then just stopped as the ENT doc didn't tell me to taper my dose. In Feb 2013 I had a recurrence of c-diff and put back on prd. To my chigrin I had another c-diff occurrence in March and April 2013. May 15 2013 I woke up and couldn't get out of bed let alone walk as everything hurt. Went to ER and no one could explain my symptoms, but was kept on 20mg of prd. I went to my PCP and he prescribed all kinds of pain pills and patches, not what I wanted to take. However, because of so much pain I reluctantly took them. Found a new doctor in July 2013 and he got me in to see a Rheumatologist at the University of Michigan where the doctor diagnosed me as having Polymyalgia Rheumatica and raised the dose of prd to 40mg with tapering after two weeks. As soon as I started the tapering all my issues flared up. Went to see her again two weeks later and she started me on Humira which started to work, however to make a long story short I landed in the hospital 11 times in 18 months where it was decided to take me off Humira and start on Methotrexate and Folic Acid with a tapering of the prednisone. It is now 2016 and I can't seem to get past 10mg of prd before I have all types of flare ups. The odd part of this is that no one really knows whats wrong with me as I've been diagnosed with PR, Reactive Arthritis, Rheumatoid Arthritis and still trying to reduce my PRD and can't get past 10mg before I start having all kinds of problems. I still am on Methotrexate 20mg and Actinol once a week and folic acid 1 x a day. This is so frustrating as I want to get off of PRD because it has affected my weight upwards as I'm always hungry. The doctor just says to me would you rather be heavier or in pain. Stupid question. I'm now wondering if I have fibromyalgia as when I get these flare ups it's not just my joints that hurt but all my muscles, my entire body hurts and it is very difficult to do anything.
I understand so well all you tell on your post, unfortunately through hard experiences since 2013 being blessed for had been diagnosed at the ER of our local hospital because any doctor I saw during 2 months were unable to do the diagnose!
Having GCA and on Pred 60mg at the very beginning, the problem started when my Rheumy gabe me the Templates for the taperings- a disaster!!!
After a sequence of flare ups and every time it happens had to increase the a amount of Pred .
In one word: better later than never , the fact is I am taking into my hands the tapering.
I had to increase the amount of Pred in order to feel 'comfortable' on my main symptom - my vision.
Our body let's know immediately if we are doing right or not.
I have an excellent GP however he does not interfere with my arthritis.
You are not alone.
Take care🌸
Please, read ' my Rheumy 'gave me'.
Sorry. Thank you.
Christine
I'm heartsick to hear all of the pain you've experienced. You say it's hard to taper below 10 of Pred. This may be a ridiculous question but, have you tried the "dead slow near stop" method reducing a 0.5mg at a time?
This is copied from another forum and outlines a slow method of tapering off prednisone.
I have been asked by two or three people on another thread about this reduction. Because of the way this forum works I thought it was simpler to just start a new thread so it is obvious where it is - I've posted it several times already but there is no real way to find it again that I can see. It is long to try to make it understandable - those of you who use word processing will be able to copy and paste it into a file on your computers to read again and again.
"Reducing pred: dead slow and nearly stop"
In an attempt to make this reduction scheme available more simply to the people who request it I am posting it here where it can be found easily. I hope noone minds but I have copied and pasted it what feels like dozens of time!
"A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get below 3mg without pain. Img at that level is 33%, 1/2mg is 17% - way above the 10% that has been recommended for years. So he used table to see the daily doses and took the new dose on one day, old dose for a few days and then proceeded by repeating that and then reducing the number of days of old dose - until he got to everyday new dose. It worked, he got off pred and has been off pred for at least 3 years (it could be longer). Something similar to mine is being tried by a consultant rheumatologist in the north of England and he too finds it works for every single patient he has given it to. As it did for several ladies beforehand.
My reductions are VERY slow. I use the following pattern to reduce each 1mg:
1 day new dose, 6 days old dose
1 day new dose, 5 days old dose
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose, 1 day old dose
1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
1 day old dose, 5 days new dose
1 day old dose, 6 days new dose
By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.
This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.
The Bristol group start new patients with PMR with 6 weeks 15mg, 6 weeks at 12.5mg and then a year at 10mg before continuing the reduction and that achieves a far lower rate of flare (20% instead of 60%) and I suspect their flares then come below 10mg as they then do the 1mg at a time reduction. Just below 10mg is a common dose for people to get stuck at - and I (and others) believe it is because even 10% drops are too much for many patients. These patients are then labelled as "steroid resistant" or told they need methotrexate to help them reduce but we have seen this slow reduction work for those patients too. We believe that methotrexate (MTX) works for patients who have late onset rheumatoid arthritis (LORA) or LORA and PMR together. Very few patients get off pred altogether when taking the MTX - those who do are probably the mis-diagnosed LORA patients - or another arthritis that responds to MTX.
When you are at doses below 5mg it is a good idea to rest at each new dose for a month at least before trying the next reduction. At this point you risk overshooting the dose that is controlling the inflammation so waiting a short time to see if symptoms reappear is helpful. If you just continue there is a possibility that you get to very slightly below the "right dose" and inflammation will start to reappear very slowly. The blood tests will lag even further behind the dose reduction - there must be enough inflammation to increase the proteins being measured for the blood tests to rise.
Contrary to the beliefs held by many doctors it is NOT a race to reduce the pred dose. Doing that will lead to flares, needing to go back to a higher dose and starting again - and the end result is you took MORE pred than if you had reduced more slowly.Last edited by PMRpro
During my reduction I follow a protocol from my doctor. I stayed on 10mg for 1 month then I reduce it by 1mg every two weeks. Right now I'm on 7mg of PRD and I find it hard to walk and my muscles around my rib cage hurt like hell when taking a deep breath. But in answer to your question I've never heard of "dead slow near stop".
I never thought of steroid withdrawal. By looking at your schedule for reducing my steroid I'm all for it. Thank you so much for your reply.
By the replies to my post, I may have to take tapering into my own hands as I'm on 7mg PRD now and I'm in a lot of pain and of course, it's Friday and no easy access to my Rheumatologist. It also helps to know that I'm not the only one with this problem. I just wish the docs could get to the bottom of all this pain. You don't know how much I appreciate the replies that have come my way by sharing my experience in this forum. I've never done anything like this before and came across this site quite by accident. The people on here are very nice and supportive. Thanks so much.
7 mg has its own set of issues. It's the level similar to what our bodies normally produce and around which time the adrenal glands need to start kicking in.
If I were you I would return to 10 mg. the dose you felt ok at and stay there for a while until you settle. Then begin the slow taper schedule that Anhaga posted for you. Either reducing by 1 mg or even a 1/2mg. Good luck.
I am sorry to hear that you are having such a difficult time. I am following the DSNS method which Anhaga has posted and to date I have not had a flare apart from right at the beginning when it was too quick a reduction from 12.5 to 10. I am reducing to 8.5 at present and feel good. Best wishes for an easier reduction.
Hi Christine, your story resonates with mine, & I am now on pred, (back to 10mg this week) was down to 5...flare. Methotrexate and Humira (tried Enbrel for about 9mths)
and am now seeing a bionatural GP to try to kick start my own immune system at reasonable levels, as I now have thyriod and psoriasis - all a dam pain but not incapacitating. I frequently have to adjust my pred, as I awoke one day unable to move at all and left rather foolish when an hour later an intravenous dose of pred had me up and about as happy as a sandboy! It made me realise that the drs do not know what we are going through and later confirmed this with my consultant and he told me to adjust it as felt ok for me. Hope this is useful.
The schedule that Anhaga has quoted to you is one which I worked out for myself because I had such difficulty reducing, always getting stuck at 9mg. It is very similar to a couple of others which you will find in various places on the 3 forums in the UK and there is a permanent post on the "front page" of the Polymyalgia Rheumatica forum with it in. It is in use at present in a clinical study in the north of England. All of us developed the ideas individually but most are based on an idea a Swedish gentleman had about 10 years ago when he couldn't get much below 5mg without problems - so spread every reduction over several days. Originally I suggested using mine for below 10mg, where the 10% rule (see below) becomes difficult but then we realised there were people who were struggling far above 10mg - it works at any level and smoothes the discomfort associated with steroid withdrawal. Even if that is all it does, that is a good thing!
You MUST remember, even if many doctors don't seem to understand the idea, that you are not reducing relentlessly to zero. You are looking for the lowest dose that manages your symptoms as well as that starting dose did. As long as the underlying cause of PMR, an autoimmune disorder, is active and producing fresh inflammatory substances every morning you will require some daily pred to combat the inflammation they are causing.
No reduction should be more than 10% of the dose you are taking at the time - that has been recommended by top US experts for years - but, from experience, you also have to stay at any dose for at least a month to be sure it is still enough to manage the inflammation. 1mg at a time every 2 weeks is far too fast to identify the dose you need, you are likely to consistently overshoot, cause a flare and have to go back to a higher dose. For some reason, getting into a yoyo pattern with the dose makes it all the more difficult to reduce the next time.
However - the doses you have been given are very high for PMR, far more consistent with a suspicion of GCA. Or another possibility may be that you are one of the people for whom pred doesn't work as efficiently as for others and so you need a higher dose. Or - it may not be PMR after all, there are no tests that can confirm it one way or the other and your history is muddied by the other problems you have. I have had PMR for 12 years, have been on pred for 7 of them and got to 5mg nearly two and a half years ago - but in January I had a flare and had to go back to 15mg, I'm back down to about 11mg now. Some people have PMR for a long time, even if others are (according to their doctors at least) are recovered and off pred in 2 years. I only know one person with PMR and one with GCA that that happened for. The average is more like 5 years.
On the other hand - since you are trying to reduce in such relatively large steps, it is possible that slowing the reduction right down to maybe 1/2mg a month using the dead slow approach might work - and it isn't slow if it works.
And as has been pointed out by others - below 10mg you are into the realm where your adrenal glands must wake up again and produce cortisol, the body's own corticosteroid which is essential for life. The 1mg reduction every 2 weeks is really not helpful there either. Production is governed by a complex feedback system which involves several organs and substances - the hypothalamus, the pituitary and the adrenal glands for a start. The balance swings about wildly at first, like a pendulum set into motion. Changing one of the parameters every couple of weeks just sets it off again, do it less often and make smaller changes and the body is better able to cope as it gets used to it.
One top expert in the UK likes to keep his patients at 5mg for up to 9 months - it is a low dose, associated with fewer long term side effects, and lets the body catch up. It then seems to help the further reduction. 10mg and 7mg are also often difficult points - no-one really knows why though.
In terms of the weight problem - for a lot of us cutting carbs drastically has allowed people to avoid putting on weight in the first place and in some cases led to weight loss - I lost 38lbs of pred-associated weight gain after doing so. It can be done but you have to be disciplined - if I eat more carb than usual I put weight on - back to my "new normal" diet and it goes again although I do appear to be a bit stuck at present!
I can only repeat what others have said already - take it easy, slow is the name of the game. Best of luck Christine
I can only sympathise with you, I too am on my third flare up, even got down to 2mg pred and then back up to 60. Very frustrating as I know it sounds petty but I have put on two stone. The hunger is like no other, unless anyone has experienced this they cannot understand. I think the only thing you can do, like me is hang in there. Good luck
This reduction system is really from our resident expert, EileenH.
After reading a lot of the posts here last night I readjusted my PRD dose to 10mg and woke up this morning feeling soooo much better. Gosh I could walk, breathe, use a pencil and toilet without any difficulties. I'm kind of getting the impression that only the person having this difficulty with tapering can effectively control their own pain. I am going to try Anhaga's reduction plan and tell my Rheumatologist what I'm doing because I will need new scripts for 10mg, 5mg and 1mg. Wish me luck.
Good Luck
Thank you for your reply. Just to let everyone know I did up my PRD to 10mg but still had to take a pain pill last night but when I woke up this morning I felt so much better and as the day goes on I feel better with ever hour that passes. Words cannot express how good I feel. Since it is the weekend and can't get in touch with my Rheumy I sent her an email through mychart with the suggestions on the tapering from Anhaga. I hope she agrees with the tapering because I will need a script for the 10mg of PRD.
Christine, same here......trying to go down to 7 mg from 7 1/2 has been painful because I did not have enough sense to use the DSNS method.
I live and learn......
Thank you Eileen....I am printing out your message, that I DO NOT forget!!