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

    I have GCA, is it different for this disease then PMR as far as tapering? 
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    • Posted

      You can use the plans as well for reduction.

      People with PMR are looking and following their symptoms and feelings, you look out for yours.

      GCA only 5 years and now in remission going on 6 years.

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    • Posted

      Sorry Harriet, I only know about 4 people who have gone into remission earlier.   But do not despair, we only get to hear about the people with problems.
      Report Reply
  • Posted

    Gday every body.........This is my first first post even though i have had PMR for about 14 years........took my doc ages to find my problem......i couldnt dress my self etc.......was dehabilatating. Was heaven i when first went onto prednisone..yeah..

    I have been trying to get of pred for years..but kept getting flare ups......

    Have tried Methotrexate and half a dozen others but all made me sick in the 

    stomach..........My only success so far was to reduce the dose of pred by one

    quarter mg per month.......if i had a flare i would up the dose by 2 mg for

    a few days then start again ....it has taken me a couple of years ..but am now

    down to 4 mg daily and things are going good..........i dont think you can come

    off pred till PMR is leaving you....regardless of what you are taking.........

    But reducing the dose super slow is (in my opinion) the way to go........

    There appears to be no magic bullet...........

    Billy 49454

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    • Posted

      PS........i am taking Fozamax and it appears that is keeping my bone

      density in good shape while taking Prednisone...........

      ....................Billy...................

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    • Posted

      Billy you need an ACTH test, appt with endochronologist to see if those Adrenal glands are working and up to speed.   Long time on pred so it is essential  you have it done.

       

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  • Posted

    Just found site and I am thankful !  Had PMR for 8 months , and currently on prednisone 10 mg a.m. , 2mg p.m. . Dr's want me off night time totally , 

    but never have I tolerated . Just droping p.m. 1mg at 3-4 weeks and shoulders say no way . Is it agreed that that getting off p.m. dosage a must ? My new Rheum Dr wants me on 7.5 /7.5  am/pm and alternatingly drop 1mg per month . Scared to do it as feel I am going backwards , and am worried about night/adrenal issue . But I am weak generally , and shoulders particularly . My sed rate has gone from 70 at start to 9 , 12 , 29 and 17 (11/4/16) . What do you think ? Thank you .

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