Dead slow and nearly stop reduction plan

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.

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  • Thank you very much for this; it comes at a perfect time for me, as I'm having what I suppose is a flare up. I increased my dose this morning from 7.5mg to 9mg and will do as you suggest. It makes good sense.

  • PMRpro

    Thank you so much for this. I told my GP about it today and will be starting with 4 days old/1 day new to move from 12.5 to 11mgs. She seemed quite happy about it even though she originally told me to go from 12.5 to 10mg after 2 weeks! I will probably slow down when I get to lower doses. It's such a relief to know that I'm doing what I can to avoid flareups.

    Once again many thanks.

  • Hi, PMRpro, I am little confused about the system for reduction, for example, as there are 7 days in the week and you take a dose each day, how can you have for example " 1 day new dose, 2 days old dose" what's happening on the other 4 days? I'm obviously not reading it right so would appreciate any help you can offer. I've had another flare up, only the stupid nurse that gave me the results of my recent blood test told me the inflammation markers were normal, but i was getting shoulder pains and fatigue and I wanted a flue jab so went to the GP the next day to be told I needed to increase my steroids as the markers were up. I've only gone from 5mg to 7.5, and feel better, still got slight shoulder pains though!

  • Forget 7 days in the week. You are just taking the new dose for 1 day each time but getting those days closer together.

    Take the new dose for 1 day, then take the old dose for the next 6 days.

    Take the new dose for one day, then take the old dose for the next 5 days.

    Take the new dose for one day, then take the old dose for the next 4 days.

    Take the new dose for one day, then take the old dose for the next 3 days.

    Take the new dose for one day, then take the old dose for the next 2 days.

    Take the new dose for one day, then take the old dose the next day.

    Now you are at one day old dose, one day new dose.

    Take the new dose for 2 days, then take the old dose for 1 day.

    Take the new dose for 3 days, then take the old dose for 1 day.

    Take the new dose for 4 days, then take the old dose for 1 day.

    Take the new dose for 3 days, then take the old dose for 1 day.

    Take the new dose for 4 days, then take the old dose for 1 day.

    Take the new dose for 5 days, then take the old dose for 1 day.

    Take the new dose for 6 days, then take the old dose for 1 day.

    And then you can embark on every day new dose!

    Many doctors say that when you have a flare it is a good idea to have a few days at your present dose plus 5mg - so for you that would be a few days at 10mg and then drop to 7.5mg and then start your slow reduction again. I did that recently and it really worked very quickly but I didn't drop the dose until all the niggles had disappeared.

    Never accept "your results are normal", especially from a nurse but doctors don't get it right either. Ask for the figures and keep a note in a diary - if you have a mathematical mind, draw a graph of the readings so you can see what they do. Make a note of colds, accidents, stress - and see if there is a pattern. There often is.

  • Thanks so much for that, and yes, I had wondered how high to go back up to. My GP seems to just leave everything to me, not much help at all. They seem to know less than I do which is not much at all. I was reluctant to go all the way back up the 30 mg that I was first on, but 10 doesn't sound too bad, so I'll increase and hope that puts a lid on it. It will be 2 years in Feb when this hit me out of the blue. But I don't seem to have the symptoms everyone else has, just the terrible pain the shoulders and fatigue. Never had problems with lack of movement (other than having weak shoulder muscles just after the attack) and I don't get pain anywhere else. I asked about seeing a Rheumy and the GP says that the latest guideline is for GP's to manage this condition, no need to see one, "and they wouldn't do anything different anyway". Which in a way is good for Holiday Insurance, one less person to declare that I see. My insurance to USA sent my premiums sky high when I declared PMR, I guess they were afraid I might develop GCA. One of my GP's told me this was so rare, he hadn't seen a case in 40 years of practice. Doesn't look that way reading this forum though! Thanks again for your help, it's nice to know this forum exists, I don't feel so isolated with this now, never heard of this before I got it!

  • He isn't quite correct on that - if anything is atypical then you should see a rheumy. That means being young (under 50) or an incomplete response to 15mg pred. You needn't be fully pain-free but there should be at least the 70% improvement in everything - except maybe fatigue since that is the autoimmune bit and the pred doesn't touch that.

    You need to search around for travel insurance. PMR shouldn't send premiums sky-high - most of us found about £3 was added when mentioned, which if course you must.

    Your GP is right - most GPs often haven't knowingly seen a case of GCA during their career. Often they miss it or diagnose stroke and send the patient to hospital (if the patient is lucky). GCA should be seen as an emergency just like a stroke and diagnosed by a consultant. But even they can fail miserably until damage is done.

  • Pretty typical, over 60, pain stopped in shoulders about 2 hours after starting 30 mg pred. Fatigue also vanished, in fact I dashed out into the garden and did about 3 hours weeding I felt so good. It was only then I realised how tired a had been before. I assume that's because the pred is suppressing the PMR. For me the first warning that things are not right is the fatigue returns then the pain starts. I carry large doses of Pred when I go on hols, just in case things take a turn for the worst. I certainly pay more than £3.00 extra for annual cover, and that's after filling in at least 10 medical screenings to cross check as well as using the compare websites!

  • You are often better going to specialist companies than trying to do it online. I have always done my searches that way. Mention any illness on any ordinary site and they will almost certainly automatically either reject you or add a stupid amount to the premium. The specialist companies are much more sensible - usually means making a phone call though.

    It is also worth asking on the forums if anyone has any recommended companies.

  • Done the specialist ones and the over 50's, 60's Ageuk, Saga, all pretty much the same, best so far is the one we are already with LV. £136 for 8 days for both of us, which includes winter sports and covers all our ailments! Travel insurance is so complicated; there are so many variables - from the amount covered for delayed luggage to dropping dead! Trying to compare like-for-like requires a degree in mathematics.

  • Thnks the post, v helpful. Would u kindly e-mail to me the word document on pred reduction.

    tomharper164@gmail.com

    Thanks in advance

  • Done!

  • Hi PMRpro i would be very greatful if you could e-mail the word document on pred reduction to me as well please, thank you smboom63@gmail.com

  • Sorry - in a bit of hurry so will try to do it later but it is here:

    healthunlocked.com/pmrgcauk...

    and you can copy and paste it into Word yourself.

  • Many thanks, this will be very helpful when I reach a lower stage.

  • Thankyou so much for this I am going to try it when I hear from doctor about my blood tests.

  • Thank you this is so helpful. I have been on 15mg since diagnosis 4 weeks ago. I have an appointment with my GP on Wednesday and I intended to tell her about this. Do you recommend the gradual reduction from the start or just when the a lower dose has been reached?

  • It really does depend a lot on the patient. I used it from 15mg down because I am very sensitive to the reduction of dose and I can't cut my tablets as they are a special coated form. On the other hand, a lot of people manage 1mg "overnight" or by going via a week of alternate days old and new dose.

    Many doctors say 2.5mg at a time and again there are some patients who manage to go from 15 to 12.5 without problems. Below 10mg though I would say the slow reduction is far better. Apart from anything else, the withdrawal discomforts many patients complain of seem to simply not occur with this slow approach at any level.

    Top experts have said for years that, as a general rule of thumb, any reduction should not be more than 1% of the current dose. At 15mg that would be 1.5mg reducing to 1mg at 10mg daily dose - 1mg reductions are simply erring on the safe side.

  • I shall copy this immediatley. I am new to the forum and should have read this before I posted my first post re Am I Reducing too quickly. Now I just have to translate this into French and show it to my rheumy!

  • Sorry - can't oblige there but I did translate a French paper about GCA into English for a student last year! I didn't know my French was so good but I am a professional science translator so know the tricks. It was a challenge but such fun!

  • Well, I shall only do the succinct points! He's quite open to suggestions so am not expecting to have much of a problem convincing him.

  • I'm a 77 year old lady who before my illness was very active playing golf and teaching dance exercise, so I thank you so much for posting this valuable information for sufferers of PMR/GCA.

    I have been on 'Pred' since being diagnosed with this condition in 2009. I was put on a high dose of Pred which my Rheumatologist suggested I reduced eventually to 7.5mg. I eventually achieved this in 2012. For several years I felt comfortable, but was never encouraged by my GP to reduce futher, in fact I didn't see a Rheumatologist from 2009 until May 2015. Sadly in 2012 I was admitted to hospital with Sepsis which caused my kidneys to go to sleep, then cellulitis, and AF. During my stay in hospital my Pred was monitored by the Consultants and two months later I was discharged home on 10mg of Pred. In 2013 I became ill with shingles so was put back onto 25mg of Pred to control the severe pain I was told to reduce by 5mg over 4 days, then 5mg fo 4 days then reduce back to 7.5 mg. It was difficult as I was still feeling unwell. My doctor then suggested I take 10mg until I felt comfortable. During 2014 I suffered two set-backs with respiratory infections so once again my Pred was increased and it became a yo-yo situation until the infection was under control. In January 2015 I had anothe flare up this time I was diagnosed with trauchanteric bursitis in my left hip and leg, in fact the pain in my groin was absolute agony. My GP was concerned and I was admitted to hospital. On discharge I was back on 25mg Pred for a week to reduce back to 7.5mg in a further 10 days. Again I was in great discomfort and beginning to despair, even questioning if I would ever lead a comfortable life ever again but I continued on 7.5mg but In May 2015 I had another nasty flare up so again my Pred was increased back to 25mg. It's now July, and I'm now taking 7.5mg. I've been in discomfort and pain in my right shoulder, also pain and swelling in my left knee for weeks and I'm at a loss as to what to do to control this painful situation. My feeling is that my body is confused with having so many health problems to deal with and that yo-yoing with Pred medication has definitely not helped. I question whether I should increase my Pred and use the reduction chart to monitor how I feel and hopefully progress during the forthcoming weeks and months. I would welcome your comments.

    Kindest regards.....

  • I'd have thought that corticosteroid injections would be a far better way of dealing with things like bursitis - the effect is local and you use far less than if you increase the oral pred which doesn't reach joints, bursae and tendons well as their blood supply is poor. I had a fairly aggressive therapy using iv pred, pain killers and diazepam - it worked a miracle but unfortunately I had a very rare but known reaction to the iv diazepam so it had to be abandoned and the much slower traditional way was resorted to which included cortisone injections amongst other things. I'm not in the USA or UK though which does make a difference.

    And I'm going to suggest you try to find a Bowen therapist - it may help, if it does you will know within 3 sessions and if it doesn't you just stop. Your traditional medicine management really doesn't seem exemplary - adding in a bit of the alternative stuff may ease some of the pain which would allow management with a bit less oral pred. There are a lot of people on this forum who have tried it in PMR and it has provided some relief - often dramatic.

  • Thank you for your comments and advice. It's so reassuring to be able to discuss problems with PMR/GCA with people who understand the condition and the pain and discomfort it brings. I am going to try and find a Bowen therapist in my area

    and as you say, if after several sessions it doesn't bring relief then you stop. In the

    meantime I'll continue to take 7.5mg of Pred and use the slowly slowly method of

    reduction over the next months.....I could be onto a winner!

    Regards,

  • Thanks so much for that post!

  • This is very helpful thanks. Could you email me word document please to amanda.lee@intu.co.uk

  • I'm sorry, no I can't do it at present as it is on an old computer which isn't easy to get at - the original post was put up a long time ago.

    However, you can get a copy of it and a second similar reduction plan from

    pmr-gca-northeast.org.uk

    I presume you do it using the Contact Us button to send an enquiry.

    You can also copy and paste it into a word document yourself.

  • Thank you so much for this link.... very interesting and useful info. I will copy and paste this to my medical file.

    :-)

  • Copied and pasted many thanks.

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