Reducing pred: dead slow and nearly stop method
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Copied from Eileen's post in another discussion.
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."
Further comment from Eileen in original discussion:
Can I add a codicil to the very slow reduction plan in the above post:
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 increases the proteins being measured for the blood tests to rise.
Someone has asked this question:
"I'm at 7mg going down to 6mg, and I'm at the point where I'm starting to shift from more 6mg than 7mg, but I can tell the pain is returning. So...do I jump up big to say 10mg, or try 7mg or 8mg? I hate the very idea of going up at all, but it is what it is."
My reply was:
No - you go back to the last dose that worked well immediately and stop the reduction. This isn't a "flare", this is your body telling you that you have got to the dose you are looking for: the LOWEST DOSE THAT MANAGES THE SYMPTOMS. It doesn't mean you won't get lower, it just means not yet. However slowly you reduce, whatever scheme you use, you will not get below that dose without a return of symptoms because of left-over inflammation that hasn't been removed by the amount of pred you took. It is if you ignore these warnings that you will allow a build-up of the inflammation to the stage where you will have a flare on your hands.
To comment on something someone else said - you have differentiated between steroid withdrawal and a return of symptoms by using DSNS. If you were going to suffer with steroid withdrawal you will notice it the first day you use the new lower dose. That is the idea of DSNS - you go back to the dose your body is happy at for a few days and then show the new dose to your body again. For me it usually takes about 3 times for my body to accept the new lower dose and stop complaining.
37 likes, 145 replies
shelleysinclair Emis_Moderator
Posted
Thank you for the great information.
elizabeth40672 shelleysinclair
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Bethune Emis_Moderator
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A great description and explanation
Manxboy Emis_Moderator
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jancorb Emis_Moderator
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After three flares between 8 to 6 mg I'm now reducing by the slow method by half a mg., But stopping at the point of one low dose one higher dose and staying at the low dose for three weeks, this I calculate will take me 98 weeks to zero preds. But never mind I'm approaching 7 mgs with no flare, we need someone to be following all our trails, any PHD students want a challenge. I have kept a record of daily doses for the last 18 months.
Twopies jancorb
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I figured about the same...a little more though because I was thinking about stopping at each new low dose for 4 weeks...like you, will keep track of how I'm doing at each juncture--didn't do that the first time around and bombed out when I tried 4.5. This time I will pay close attention at 5--which seems to be a sticking point for a lot of people. Let us know how you do! Hugs to you
jancorb Twopies
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amkoffee Emis_Moderator
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I am coming to you on this thread because I know no other way to get help on this website. Several of us are having problems being able to go from our email into the discussion. We're getting an error message. This is been going on for several days for me. I didn't report it before now because number one I hoped it would just get fixed and number two I didn't have time to mess with it. I would appreciate it if you would report this to the appropriate people since there is no link that I've ever been able to find to get help. Sorry to bother you in this thread and in this group but it was a last resort.
joanne89589 Emis_Moderator
Posted
Hopefully I will be able to report soon on positive effects, rather than trying to distinguish between side effects and PMR,
judy68207 Emis_Moderator
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I have been doing a little research, and have found that it is very important to take the prednisone in the AM. Our Adrenals begin their work early in the AM and we need to mimic the Adrenals with our meds.
I am down to 5 mg from 20 mg using the DSNS method shared above. Thanks to my husband, I have never missed a dose. I have mapped out every dose by date... down to 0 mg in a small notebook, and now I fill one of my five small weekly pill containers with pills for one week (I do a month worth at a time). My Rheumy says the Adrenals normally produce about 7.4 mg of cortisol, so the fact that I have had no flare so far is a pretty good indication that my Adrenals are functioning.
My next question- we are going to Florence, Italy for 2 weeks in December- there is a 5 hour time difference. If I take the prednisone at the same USA time every day (6:30 AM USA is 11:30 AM ITALY) is that early enough in the day? If I switch to 6:30 AM Italy time, that is 1:30 AM USA time. Is that too early? I don't want a flare now because of the time change!!!
The day we return is my first 3 mg dose, followed by six days of 4 mg again.
BettyE judy68207
Posted
I think for the majority taking Pred. in the morning is right but it was not for me. When I complained of the over hyped rapid pulse semi panic feeling that followed within two or three hours of taking my steroids, my GP said to try taking them at 9.00 PM instead. To my delight and his interest it worked and I remember him saying " I'll note that for future reference". I continued to take them at night until I got to zero and the unwanted symptoms did not return. It did not affect my sleep.
erika59785 BettyE
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Yes, taking prednisone in the morning works for most, but it did not work for me either because I would be in pain until almost noon to get relief. I am a morning person, and need to "get going" right away.
I am taking it in the evening, I sleep fine and feel ready for the day in the early morning hours.
patricia06878 Emis_Moderator
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i have had CNS Vasculitis since 2009. I have been trying to reduce y daily dose of Prednisolone, initially 60 mg per day, slowly, slowly. I reached 6 mg per day without any problem, but since dropping to 5 I feel awful, so I have put myself up to 6mg. your post was definitely helpful and after seeing my rheumy I shall give it a try.
jancorb Emis_Moderator
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These posts are so helpful, I got down to 7.0 mg with few problems so went straight to 6.5 mg on the DSNS method and after one week was in trouble, so back to 7 mg .
Your advice to rest awhile then try again seems very sensible, I'll try not to get downhearted, from what I've read my adrenal glands may not be functioning correctly just yet. Thank you again.
Twopies jancorb
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judy68207 Twopies
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I am doing DSNS and am to 5. Took my first 4 - day before yesterday. DSNS means I will have 5 days of 5 before 4 again. It's very gradual. If I feel like the flu is coming or achy, I can slow down even more and stay at 5 another week. My Rheumy says DO NOT jump back up much higher- just to last mg that worked and maybe stay there a month. I want off, but this is the only way that will work for me I believe. Good luck!
Twopies judy68207
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