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Reducing pred: dead slow and nearly stop method

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.

122 Replies

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  • lodgerUK NE Emis Moderator

    Thanks Alan

    We do issue them free of charge if patiients contact us by looking on the net for PMR GCAuk North East Support.

    To date we have distributed over  nearly 200 and counting.

    Some GPs and Consultants have agreed to there use when Patients have taken them and discussed both plans.  So far so good.

     

  • maurice1962 Emis Moderator

    Cramps in my legs in my hamstrings have woken me up 230 am. Once that subsided it move to the side of my leg and i couldnt straighten them for at least 3-4 minutes. Thats the longest ive had to endure any sort of cramps before!! Ive recently four days ago reduced my prednisone from 20 mgs to 16mgs . Does anybody think this is prednisone related or unrelated? Ive had pmr for only 4 months and im a 54 yr old male.I started back at work 11 days ago at my occupation as a knifehand at the meatworks. Was on 20 mgs for around 3 months . Looking forward to your replies thank you 👍👍

    • dea13 maurice1962

      Hi Maurice, I can only say what I feel. I also get calf muscle pain, am reducing. I take a mega magnesium tablet just before bed and it help me big time. Magnesium relaxes the muscle and gives great rest for me>

      Good luck Dea 

    • paula21528 maurice1962

      I had cramps in my right calf last night it woke me up I couldn't straighten my leg for a few minutes had to rub it hard to get rid of the cramp I've never had cramp before last night was the first time I got it I hope I never get it again

    • freda07782 maurice1962

      Hello Maurice, I too suffer very badly from cramp in my legs when I sit too long or very early in the mornig. It is extremely painful and I have to get up and wiggle my legs and walk about. It certainly makes a very disturbed night. A friend's doctor told her that Zinc if the answer for cramp. And indeed every night now I take  Zinc, Magnesium and potassium. At first it gave me pain free nights for about a month but latterly I've been bothered a bit with the return of cramp, but not as bad as it was. So I suggest you get yourself some zInc and try that. Hopefully it will have the same positive effect. I only hope I'll continue to sleep through the nights without doing my midnight wiggle!!!! I had wondered above Vascillitus!! Hope I spelt that correctly. Also wondered if this cramp In the legs is associated with PMR which the docs believe I have. 

    • freda07782 maurice1962

      Hello Maurice, I too suffer from night leg cramps, but have the answer for me. Tonic water every day, 200ml if Fever Tree brand. If I use the cheaper tonic water sold in the big stores I need a good glass full. I understand it's the quinine that does the trick. I've had restful nights for over six months now since trying out the tonic water. It works for me and I would encourage you to try it. I've read it doesn't work for everyone, but I for one, know in the night if I forget to take my glass a day!  Good luck! 

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