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.

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  • Posted

    Hello and thank you again for sharing this very helpful post. I read it sometime ago but couldn't find it s second time but wanted to try to help my monther reduce her current steroid dose. She is also on MXT and has had  both medicines for the last two years. I've not followed it quite right but wondered if anyone could advise on next steps as we have reached 6 days on 2.5mg and 1 day on 5mg. What should we do next? Thank you.

  • Posted

    I'm not very good at using this forum so forgive if I do it wrong, ok? I was using this method but had a return of pain, fatigue and stiffness when I tried to go from 5 mg to 4.  I went back up to 5 mg for 10 days and feel better again. So...can I now go down to 4 1/2 mg using the dsns method or do I stay on the 5 mg for a whole month? A little background--I feel pretty miserable most of the time, especially mornings, then I perk up a little in the afternoons.  Diagnosed with poly last September, started pred in October. Thanks! (I feel kinda alone as I can't find a soul who has ever heard of it). Except my doc who says he has 5-6 cases a year so this forum is s blessing. 

  • Posted

    Have had PMR for 1 year 2 months. Began at 20 mg.  Have faithfully followed DSNS method to the letter from about 9 mg level on. It really works for me. Have never missed a dose. I chart it out on paper for a month at a time, and put the pills in the little week-at-a-time plastic containers. 

    I have never met another person - in person - who has PMR either. I have more up days than down. I volunteer at the local USO and will soon begin volunteering at the local elementary school library. I retired from teaching 6th grade science about 3 years ago. We still like to travel, but we have moderated plans and locations a lot. 

    I was in bed so much the first couple of months, but I have driven myself to get up and out!! It would be easier to stay in bed!

    I owe my current health level to a wonderful husband, understanding Rheumy Doc, obstinate adherence to to dosing method, and God's blessings for today??

    • Posted

      Hi Judy, just wanted to say that I was delighted to read that you aren't volunteering in a school library. I'm a librarian and work in schools and they need all the help they can get. 😀 I've been on my PMR journey for 18mths now with a possible diagnosis last November. I've manage to reduce to 13mg of pred and hope to continue reducing after my holidays. Good luck with your journey! 

  • Posted

    I've just found this and it's so helpful, thank you. Just one thing - I'm reducing from 20mg pred. Would you suggest tapering to 17.5mg using the above method - or is this method for when you get below 10mg?  Celia

    • Posted

      Hi Celia, I managed to come down to 15mg from 25 mg fairly quickly nut could not got to 10 the same way. I am on 13 by this method and it is the lowest I've got so far. As they say on here everyone is different and 10% reduction is what you are looking for. Hope this helps! Elizabeth 

    • Posted

      Thanks Elizabeth - just what I needed to know. It's so useful to get the experience of others and be guided by it. Love this Forum! 

    • Posted

      Generally speaking, went down 1 mg per month until I got to 10mg. Then switched yo the DSNS method.
    • Posted

      Hi Celia, I was able to get to 15 by reducing by 5mgs a week but at 15 I had to go much slower... I got down to 5 for several months, but at 4 had a flare  and now Im all the way up to 27, and can't reduce by 5 any more...  I'd recommend going slowly.. 

    • Posted

      Thanks Bethune, timely advice as I'm just going down from 17.5. I don't feel in a rush and you've made me feel even more cautious. Disappointing for you but you must have felt relieved to get the pain back under control. Good look with your next reductions. 🍀

  • Posted

    Just a note about a very important aspect of prednisone. When I had my first atack of PMR, the MD started me on a 60mg/day dose of prednisone. That was a year ago, and brought my pain to a halt quickly.

        I have been trying to get to zero dose ever since. Once, at around 20mg/day, I noted that I awoke with a swollen and painful wrist back again. It continued, so I presumed that Rx was wearing off too early from the previous morning, so I started taking my prednisone at bedtime. It seemed to work.

        I'm now at 5mg/day but cannot stay at 2.5mg/day. I just read in a medical column in the newspaper, a doctor mentioned, in a response to the body's ability to make cortisone, that it should resume, unless you're taking 5/mg at night. 

    My MD confirmed the fact and said that prednisone is designed to be taken in the morning, to coincide with the body's natural cortisone function. My pill box only said "once a day".

            I'm now reducing on the morning schedule and hope that I haven't done irreperable damage to my endocrine system.

    I hope this helps others and welcome anyone with information.

    • Posted

      Very interesting indeed. Many people on the forum play with different dosages at different times as they find out what works for them. I do feel that if taking pred at the wrong time impacted critically on our endocrine system it would be flagged up by the health service or in the accompanying leaflet. Hope the switch to morning pills works out for you. Getting down to 5mg a day and coping is a pretty good achievement! 
    • Posted

      Thanks Celia.Although the pill bottle just says once a day, the insert says to take it before 9:00am. Just to add more confusion, one brand's insert says that it has a 4 hour time delay before releasing. I've asked the pharmacist to research it, and she'll call me back tomorrow. Stay tuned.

      George

       

    • Posted

      Thanks Judy. From now on I'll only take it in the AM. However, one brand has a four hour delayed release. Hopefully, I don't have to get up in the middle of the night to take it.

      Thx,

      George

    • Posted

      I take it at 6:30 AM.  I eat a container of yogurt, then take the prednisone. Watch AM news. By 7:30 or 8:00, I'm ready to go. 

      Some say no yogurt, but it works for me??

      Judy

    • Posted

      It's a labyrinth! Look forward to the next instalment...

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