Dead slow and nearly stop reduction plan - PMRGCAuk

PMRGCAuk

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Dead slow and nearly stop reduction plan

PMRpro profile image
PMRproAmbassador

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.

114 Replies

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.

JoanJo profile image
JoanJo in reply to Judemymum

That's it! Thanks so much.

JJ

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!

PMRpro profile image
PMRproAmbassador in reply to sharon1953

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.

sharon1953 profile image
sharon1953 in reply to PMRpro

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!

PMRpro profile image
PMRproAmbassador in reply to sharon1953

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!

PMRpro profile image
PMRproAmbassador in reply to sharon1953

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.

sharon1953 profile image
sharon1953 in reply to PMRpro

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

PMRpro profile image
PMRproAmbassador in reply to tomh

Done!

notnice profile image
notnice in reply to PMRpro

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

PMRpro profile image
PMRproAmbassador in reply to notnice

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.

notnice profile image
notnice in reply to PMRpro

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

alexgranma13 profile image
alexgranma13 in reply to notnice

Hi I took a photo on my phone of the last time PMRpro gave out the info.

Hope you all taking care

Chrsitine

Rose1bud profile image
Rose1bud in reply to tomh

Would u please e-mail me the document on pred reductiom

PMRpro profile image
PMRproAmbassador in reply to Rose1bud

I'm sorry, I don't have it as a file - the link is a couple of posts above and you can copy and paste it yourself.

Or contact this charity site and they will send you this taper plan and another similar one by email:

pmr-gca-northeast.org.uk

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?

PMRpro profile image
PMRproAmbassador in reply to margiebell4

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.

Heidi_SF profile image
Heidi_SF in reply to PMRpro

In your last paragraph I know you mean "...not be more than 10%."

Just trying to limit the confusion! :-)

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!

PMRpro profile image
PMRproAmbassador in reply to Deemar

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!

Deemar profile image
Deemar in reply to PMRpro

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.

Hidden profile image
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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.....

PMRpro profile image
PMRproAmbassador in reply to Hidden

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.

Hidden profile image
Hidden

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

PMRpro profile image
PMRproAmbassador in reply to Adnamaxx

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.

Thanks

Any experience with methotrexate for PMR

PMRpro profile image
PMRproAmbassador in reply to Edtx

You would be much better starting a new thread - this is over a year old and only people who are following it would see it - by no means everyone.

There is no real evidence that mtx helps reduce pred dose for the majority of patients - if it worked for PMR they would use it, They don't. It MAY change the way your body metabolises pred and allow a lower dose to have the same effect but even that is subject to dispute. My own personal opinion is that it works for the people who don't just have PMR or who have been misdiagnosed as having PMR when in fact it is an inflammatory arthritis where it does work.

caterpillar profile image
caterpillar in reply to PMRpro

i was taking Methotrexate for 2 years, as my rheumy refused to diagnose me with Polly, it made absolutely no difference to my pain...

Thank you so much for posting this - really appreciate it! I'm definitely going to try it this way. Fingers crossed it'll work for me too!

Tag

Can't tell you how grateful i am to find this method of reduction as I've given into to pressure from doc to quickly reduce then have flare up and feel really unwell resulting in pred needing to be increased agian. Its been like a rollercoaster. thank you

PMRpro profile image
PMRproAmbassador in reply to tinwoman

Good luck! Do put up a post if you have any questions.

I was just being diagnosed when you first posted this - I only came onto the site last year and wish I'd seen it back then as I could never reduce without withdrawal symptoms. Once that was realised Prof D gave me a reduction plan very much like yours and it works much better. I've never got below 3mg pred for other reasons but seeing this has given me new hope when the time is right. Prof D says I can take as much time as I like but he says it's okay to stay on the 3mg for now..

PMRpro profile image
PMRproAmbassador in reply to Telian

Interesting - we knew he'd started suggesting to patients to spread a 1mg drop over a few days repeating pattern - and it was after this was being broadcast on the forums so I was quite amused.

There seems to be this assumption by doctors that everyone can reduce longterm pred just like shortterm courses - but for some people it just doesn't work. And of course once you are expecting to feel unwell it increases the likelhood you will. But for me the biggest advantage in this is that you are so far less likely to have withdrawal effects - which all too often are mistaken as flares. I'm sure that's why we have so few flares when people use it.

If I could get to 3mg I'd stop trying I think...

Well I have, I've been on 3mg for 17months and just increased to 5mg following colonoscopy last week where, for the first time (had three in three years), they didn't give me a top-up of pred prior to procedure saying I didn't need anything on such a low dose - how wrong were they, I did have a flare the following day which responded instantly to the small increase... have reduced by one today and am still okay on 4mg...

I used to worry about getting lower, as I didn't have this site until last year, but once listening to you and DL I realised I needn't so I don't.....

PMRpro profile image
PMRproAmbassador in reply to Telian

Er - it is on such a low dose you are most likely to need it!

Following on symptoms have returned today woke me early with body stiffness, pain in shoulders and neck, jaw ache etc, I've upped back the one to 5mgs what do you think is it withdrawals or do I need the extra? I've always suffered withdrawals..

PMRpro profile image
PMRproAmbassador in reply to Telian

Going down 1mg at a time is a lot at this level. It sounds to me as if you need that extra at present. These really are such low doses I wouldn't be worrying about waiting a month or so to try the reduction again. But only you can recognise if it feels like withdrawal.

Today I am not so good and it could be withdrawals but don't know as symptoms are the same as a flare - need to get bloods done and I have an appt with Prof D on the 20th so might stay as is until then. At least helps me relax speaking to you, many thanks for that.

PMRpro profile image
PMRproAmbassador in reply to Telian

Stick - no point rushing at this stage...

I will, thanks for your help PMRpro.

hello PMRpro, i must be missing something in your explanation of the dead slow tapering method, for example, as i read down the list, ie one day new dose, 4 days old dose, that,s 5 days out of week, what happens with other 2 days, or another example, one day new dose 3 days old dose, that,s 4 days, what happens for other 3 days? sorry, i am not understanding, my instructions from my rheumy were as follows, one day new dose, 6 days old dose, then 2 days new dose, 5 days old dose, then 3 days new dose 4 days old dose, and so on, until you have reached the week where you are taking new dose daily, sorry, i just don,t understand how the list you did works, missing days?

PMRpro profile image
PMRproAmbassador in reply to arvine

It has nothing to do with a weekly pattern, it is continuous over a period of about a month or more. You don't "miss" days - that would cause trouble..

It is much like your doctor's approach BUT from the other direction. You don't have two consecutive days of the new dose for much longer than with your doctor's approach. Which I'd say is where you struggle.

Take a monthly calendar and two different coloured markers. Start on the first of the month. Colour the box for the 1st in the colour you want use for days of new dose. Then colour the next 5 days (or wherever you want to start on the pattern) with the colour for the old dose. Then colour one day for the new dose. Colour 4 days for old dose. Continue with a single day for new dose and always one less day for old dose until you get to alternate days old and new.

Then do the opposite to increase the number of days of new dose. Often by the time you get to that stage your body has got used to the new lower dose and you only need to get to 2 or 3 consecutive days of the new lower dose to feel you could now just go straight to every day new lower dose.

If you are still inside the current month you could stick at the new dose until the first of the month and start over again if it makes it easier. Or you can just start the pattern again irrespective of the date.

Does that make it more clear?

yes,, think i finally got it, although it is not the way my rheumy suggested, but I am going to talk to her about it, if i can get down to 7 for a month, without too much discomfort, i am going to try your method to get down to 6, i don,t know if it,s stress, anxiety, or what that i have a bad night, not sleeping, and next day feeling crappy, or because i am reducing, seems when i am fairly active with grandkids one day, don,t sleep as well, and next day not very energetic, anyway, thanks for clarifiying all that up for me,

Thanks for this ! It makes so much sense to me on examining my responses to trying to taper on my own ideas

Thanks so much for this schedule....cerently worth trying. Sounds like it has a lot of merit!

Thank You🌹

Firstly Im wanna sorry as English is not my main language. I just wanna share my experience with you guys especially the new one who are struglling to stop using pred. So my story with pred start plus minus on the month of October 2017. I was diagnose with skin condition that is phompolyx. Long story short, I was given a dosage of 6 tablet (5mg each) per day to stop it. I was suppose to be taken it for 1 week and thats it. After 1 week, I was happy. My skin calm down, all going well. Then the worst thing happen. Entering the third week, I got a flare up. My body start loving pred. Doctor then prescribe me with the same dosage and ask me to temper it. One day 6 and continue reducing it in a week. But still after that, the flare come. I was so sad and wanna give up after about 4 month trying using the doctor technique of fast tempering. It's like a loop. Always the same result and never successful.

2018 came and I make a decission to try other way. I was tempering but a bit slow but still faster compare to this technique. It was working at first but I can't take below 4 tablet or my flare will come. So I start accepting my fate, maybe I will be on pred my whole life. Then, I stumble upon this technique. After reading, I see that this technique are almost the same with mine but slower. Way-way slower. This is on Mac 2018 when I discover this. So with nothing to lose, I start using this technique. Using excel to track my intake, I make a plan. I follow this technique until now, July 2019 and I'm happy to say I was down to 1.5 tablet. A number that I was just dreaming about a year ago. If I follow this plan, I will be down to 0 tablet maybe in the early of 2020. I know its look like a long time, years upon years. But believe me, it is worth a try. I got no flare or rebounce using this technique. For whoever out there who are struggling with this problem, I suggest give this a try. Don't gave up hope yet. When I am down to 0 tablet hopefully next year, I will update you guys. Thank you to PMRpro for writing this. It help me a lot.

P.S: When you do this, make sure to follow it intensely and dont miss a day. I have miss some because I forgot and trust me, it will start to show flare symptom a bit. The more you miss, the worst it get. So dont miss it.

This is so helpful thank you. I am at 8 mg at the moment and will take your advice as I try to drop to 7 mg

Many thanks, brilliant post which I shall definitely adopt.

Can I print this out? It looks very good. I’m having trouble getting below 12 mg pred

Hidden profile image
Hidden in reply to Lakesider

Yes. It is much easier if you have an example in from of you. I then used a calender to keep track.

PMRpro profile image
PMRproAmbassador in reply to Lakesider

Absolutely - that's why it's here.

Thank you. I’ll try it when I try to reduce again

1 day new dose, 6 days old dose > 1 day old dose, 6 days new dose = 52 days total, so if the dose difference is 1mg, then it should be roughly dropping at equivalent to 0.5mg per month. Yipppeee. My current prescription! I shall give this a try and report back.....around 3rd Feb. Many thanks PMRpro. :)

This link no longer works, pmr-gca-northeast.org.uk/ The charity closed down.

A pm to jinasc on this site with your email address and they will be sent to you with the resulting outcome of a small research study done by Dr Sarah Mackie.

Thank you so much for this. And, happy New Year! 🎉

I copied. Thank you!

Other tapering methods here taper.azurewebsites.net/

Finally got it saved Thank you VERY much PMRpro :)

gosh the dead slow nearly stop taper I just read here is confusing, when you read ie 1 day new dose 4 ?old dose, what happens on the other 2 days in the week, so? and it continues even to 1 day new dose, 2 days old dose, what happens on the other 4 days of the week, something doesnt seem right with this

Highlandtiger profile image
Highlandtiger in reply to arvine

Just forget about there being 7 days in a week. It is irrelevant to this system. Just work in days. It works for me. I print it out and score them off daily.

So taking your example, if day 1 new dose is, say, a Sunday, then the 4 days old dose are Monday, Tuesday, Wednesday and Thursday. Then the next day 1 new dose will be on the Friday (the next day) and the 3 days old dose will be Saturday, Sunday and Monday.....and so on.

If you can't get your head round it you may find one of the other spread sheet methods easier for you. But they do all work.

arvine profile image
arvine in reply to Highlandtiger

oh I get it now, but ive been doing what I thought my rheumy told me, that is 1 day new dose, 6 days old dose, next week, 2 days new dose 5 days old dose, next week 3 days new dose, 4 days old dose, etc, until im taking new dose for full 7 days, this seems to have worked ok for me, tapering now to 4 mgs, but thank you for explaining,

PMRpro profile image
PMRproAmbassador in reply to arvine

Nothing to do with weeks at all - if you are too confused about it get a calendar and start on the 1st of the month and then count as Highlandtiger explains. If there are any days left at the end of the month - wait until the 1st to start again.

If you want to work on weeks - use DorsetLady's way.

arvine profile image
arvine in reply to PMRpro

thank you, and what is Dorset Lady,s way please

poppetpain profile image
poppetpain in reply to arvine

Hi I found Dorset lady's tapering plan for you.

2019 edition -DL’s SIMPLE TAPER

DorsetLady

DorsetLadyPMRGCAuk volunteer

10 months ago•75 Replies

Hi,

With new patients coming online all the time thought it might be a good idea to put this out as a new post. It might be easier to locate.

I usually found once I completed week 5, I was able to go straight into the next taper. But you can always stay an extra week or so, it’s entirely up to you. On a few occasions I stayed a bit longer - if I wasn’t 100% sure my GCA was settled or if I knew something a bit stressful was on the horizon (holidays, Christmas, visitors, etc).

As I’m always saying it’s only a plan, if you need to alter it (say to repeat a week) then do so.

It’s easy enough to draw out on a piece of paper, but I do have all versions as a blank copy in Word or PDF - or an excel spreadsheet which updates the doses, so if anyone wants a copy of any or all of them please send email address to me on a PRIVATE MESSAGE - not the open forum

TAPER (5 weeks);

Week 1 -

Sun, Thurs new dose -

Mon, Tues, Wed, Fri, Sat old dose

Week 2 -

Sun, Tues,Thurs new dose -

Mon, Wed, Fri, Sat old dose

Week 3 -

Sun, Tues, Wed, Thurs new dose -

Mon, Fri, Sat old dose

Week 4-

Sun, Tues, Wed, Thurs, Sat new dose -

Mon, Fri old dose

Week 5 -

Every day new dose

SLIGHTLY LONGER TAPER (7 weeks)

Week 1 -

Sun - new dose

Mon-Sat old dose

Week 2 -

Sun, Thurs new dose -

Mon, Tues, Wed, Fri, Sat old dose

Week 3-

Sun, Tues, Thurs new dose -

Mon, Wed, Fri, Sat old dose

Week 4 -

Sun, Tues, Wed, Thurs new dose -

Mon, Fri, Sat old dose

Week 5 -

Sun, Tues, Wed, Thurs, Fri new dose

Mon, Sat old dose

Week 6 -

Sun -Fri inclusive new dose

Week 7 -

Every day new dose

ULTRA SLOW TAPER (14 weeks) - if you’re really struggling.

Same days as 7 week taper, but complete each week twice

Last edited by DorsetLady PMRGCAuk volunteer

HeronNS profile image
HeronNS in reply to arvine

One of the pinned posts lists a number of the tapering plans, with links to same, including DSNS and Dorset Lady's simple taper.

Thanks so much for reposting as I try to taper from 11mg to 10mg. This just sounds so sensible.

thank you this is the one i was looking for have tried the dropping by 1mg a month doesn't work, think this will though.

Hi PMRpro,

I've had PMR since Summer 2017 and reduced to 5 mg using this method. Then when attempting to reduce further I developed GCA at the end of 2019 and went back up to 60 mg. I am now taking 25mg and trying to get down to 22.5mg. However after 3 days on 22.5mg I awoke today with pain in both temples. I have taken 25mg this morning as per the reduction method (my second attempt to reduce to 22.5mg). My question is, should I continue on the taper or if the headache persists should I up the dose by 5mg to 27.5mg for a few days and then try again? Does the 5mg increase in dose for PMR also apply to GCA? So frustrating as am aiming to get below 20mg so that the bloating, weight gain, fatty liver and pre-diabetes symptoms will start to subside.

Many thanks.

Heron

PMRpro profile image
PMRproAmbassador in reply to Heron82

First of all - there is no guarantee that getting below 20mg will result in the adverse effects reversing - some people don't lose weight until they are off pred altogether and plenty of people with PMR who start at 20mg have the same problems. OTOH, people who were on GCA doses avoided or minimised weight gain by cutting carbs and salt in their diet - above all processed carbs and simple/added sugars. It also keeps the Hba1c level lower - some have gone from pre-diabetic to normal even while still on relatively high doses of pred.

Secondly - to have got from 60mg at the end of last year to mid-20s now is pretty fast - the underlying cause of GCA is known to remain active for a good 6 months and often longer. You need the amount of pred you need or the inflammation will build up again and you will be back where you were and requiring a high dose to protect your sight. If you have a return of symptoms never continue a reduction - that will potentially just make things worse. At least stay where you are and see if they improve over the following day or two but if they worsen immediately go back to the previous dose. You may even need to add 5mg for a few days to get back on keel.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Heron82

My advice (as is most others ) is never reduce when you have symptoms - probability is they will only get worse on the lower dose.

Try 27.5mg for at least 5-7 days - longer would probably be better as you seem to be stuttering between 25-22.5mg.

No matter how frustrating it is, if your illness needs 27.5mg or 25mg at the moment that what it needs.

You are trying to find the LOWEST dose you need - I.e. that controls symptoms - and if that’s above 20mg at the moment so be it.

You will get to 20mg, but not at the moment. You need to listen to your body - not have your eye on the dose.

If you’re stuttering with 2.5mg drops, might be worth considering 1mg tapers.

Dear both, many thanks for the sound advice. patience is required and it isn't one of my better virtues. Best regards

Heron

PMRpro profile image
PMRproAmbassador in reply to Heron82

We say on a regular basis: if you learn nothing else. you will learn patience!

Hi PMR pro,

After a couple of bad flares since last October, I am trying once again to reduce methylprednisolone. I began your slow method but have realized that the pills are 4mg and due to size can only be cut in half (single mg ‘s not available). So with 2 mg intervals would this chart still apply? Should I repeat each step?

Your input as always is respected and valued.

Sue

PMRpro profile image
PMRproAmbassador in reply to NEPatriots12

You could try getting 2mg Medrol tablets, they do exist.

If you use DSNS with 2mg reductions I would do each individual step at least twice - or start with something like 1 day new, 12 days new. It was partly developed for people in the UK on enteric coated pred who couldn't take even 1mg of plain white non-coated pred - e/c only came in 5mg and 2.5mg then, now there is 1mg as well. So they were doing 2.5mg at a time and it worked fine at higher doses, not sure about below 7,5/5mg though.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to NEPatriots12

My ultra slow plan was devised for someone who had similar issues with tablet sizes - healthunlocked.com/pmrgcauk...

Excellent advice, thank you!

Thanks so much, for this !😊

I started out at 30 mg per day for my PMR in late Feb

I got down below 20 mg and my Rheumatologist wanted me to reduce by 2.5 mg at a time I got to

10 mg and had a flare or sensitivity

She wanted me to Go to 13 mg for 1 month then 9 for a month I knew there was no way for me to go

13 down to 9 at once However it turned out even 13 did not work After

4 days of trying I went to 15 on my own That worked,so I used an adaptation of your dead slow method

It worked nicely until I got between

11 and 10 again Shoulder stiffness and some pain returned I guess

11 is my nemesis

So after 3 days back to

15 A bit slower to work but after my 10 ( I use a split dose) in the AM it goes away I am really anxious to get below 10

So I wonder if going from

15 to 12.5 at once is going to work

Since the 11-10 appears to be a trigger point , I wonder if it will work to stay at 12.5 longer ,and then back to a really dead slow will help

I have been back at

15 for 5 days

I hate to keep up the yo-yo back to 15 but would like to get back down We have a had a recent surge in Covid cases here in B.C. Canada and I know I am somewhat safer under 10 mg per day Thanks for any advice

Bridgegoddess

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Bridgegoddess

I can understand you want to get below 10mg - but to be honest there is no point if your illness needs more. You will only end up with a flare, and the more often you flare, the more difficult each resulting taper becomes.

Personally with your previous issues I would only reduce by 1mg a time - it’s much more in line with the recommendation of not reducing more than 10% of your existing dose.

As you were only diagnosed in February - your PMR has a lot longer to run ( despite what you may want or your Rheumy may think).

Thanks so much I really appreciate the input

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Bridgegoddess

Just for info, this is very old post, so unless others have saved it like me, you may not get many answers, apart from originator - PMRpro.

You may want to copy and paste your comments above into a new post - that way you’ll get more replies - but my guess would be they’ll be in a similar vein to mine.

PMRpro profile image
PMRproAmbassador in reply to Bridgegoddess

Forcing to get below 10mg is only going to result in a flare which will send you back higher to get it under control. Each time you do that is likely to make the next reduction harder. However slowly you try to reduce nothing will get you below the objective: the lowest dose that gives the same result as the starting dose did. 10mg and unhappy has no benefit re Covid - you have no natural immunity, no-one does and you can't alter the history of your pred dose. The adrenal component is as significant as whether you might possibly catch it more easily because of pred. And if you were to catch Covid then probaly the first thing the doctors would do is increase your pred dose. Not least because the knowledge now shows that pred helps in the fight against Covid.

You are at the start of this journey - half of patients remain on pred even after 6 years, only a third ae able to get off pred in 2 years.

Bridgegoddess profile image
Bridgegoddess in reply to PMRpro

Thanks , when I finally get back to 12 , should I stay there for a bit longer Since the 11-10 has resulted in 2 flares I feel that is the problem range for me at this point

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Bridgegoddess

Very good idea!

PMRpro profile image
PMRproAmbassador in reply to Bridgegoddess

Yes - it doesn't mean you won't get lower - just not yet. There is no point fighting it - if 11mg is "your" dose for now, be grateful. Try another 1/2-1mg in a couple of months. Often having a bit of a rest from reducing helps.

Bridgegoddess profile image
Bridgegoddess in reply to PMRpro

I so appreciate all the advice My GP wanted the name of this site for other patients dealing with PMR Thank you so much 🥰

I remember seeing a link to a study on a link to PMR and Effect of histamine

But I cannot find it now Could someone please direct me to it

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Bridgegoddess

You’d be better off raising a new post to ask this question - but this was post a few months ago

healthunlocked.com/pmrgcauk...

Or try typing histamines search box

PMRpro profile image
PMRproAmbassador in reply to Bridgegoddess

I'm sorry, I have no idea what you mean. I and DL are probably about the only people who will see your question as this is a very old thread and few people will be following it, Try posting a question in a new thread - I know there are a couple of people who are "in" mast cell activation.

I wrote a post on histamine intolerance a few years ago, you can find it here. Also if you type histamine into the search box on hte top right of the page you might find more references. healthunlocked.com/pmrgcauk...

Yes Thank you I read it and found it very interesting I do not seem to have problems with many foods but I am fairly careful to not overdue any one thing Thanks for your reply

Thanks Mrs Pro,

About to start dead slow stop now I have been very stable on 8mg.

New diet is chock full of anti inflammatory foods, so hopeful that I can now taper safely.

Thank you, this is exactly what I wanted. Kind regards, Sue

PS. Feel like I know you, strange. You and Dorset Lady are great.

PMRpro profile image
PMRproAmbassador in reply to Suedeshayes

Thank you!

A very good read, thank you

I don't really understand the DSNS method but I understand that we are all different where one taper doesn't fit all.

I've had PMR for 16 mths and still only on 14.5mg of pred due to flares (incorrect start 40mg - 20mg - lowest 10mg). I was reducing by 0.5mg per 2 weeks and am now coping with 0.5mg reduction per week - I plan to reduce by 0.5mg per 2 weeks when I reach the12mg mark given my past flares. Does this seem like right approach?

I will tackle a tapering plan under 10mg based on comments from others on the forum (if I ever get to 10mg).

Thanks in advance for any response.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to choirsinger1986

You don’t know until you try, but not sure why you don’t understand DSNS - it’s just getting from A to B very slowly, but I’m sure PMRpro will explain in more detail if you need.

PMRpro profile image
PMRproAmbassador in reply to choirsinger1986

It seems fair enough - anything is OK if it works for you. The only trouble with reducing every week is that you aren't on the dose long enough to know it is still enough and half a mg can sometimes make the difference between OK if it is just what you need and not OK. But becauseyou are changing dose often you then can't tell where it went pear-shaped. Below 10mg may be the time to slow down a bit - soon after that you have the adrenal adjustment on the scene as well.

What don't you understand about the DSNS concept? It is just challenging your body with the new lower dose one day at a time and being on the dose at which you are comfortable between but bringing the test days always closer together, My body takes 3 "sightings" and then decides to accept it without protest, the rest of adding in doses until you are every day new dose is then easier. Some people are very sensitive to change in dose - even 1/2mg all at once is too much and they just feel rubbish for days after. Generally, DSNS manages that so the rubbish days, if they occur, are just a single day at a time and they know tomorrow will be better.

Thanks - I understand the theory as you've explained it and how it is written down. What I see from the DSNS method is that it would take potentially 10 weeks to reduce by 1mg and to me this is far too slow - for me this would mean taking pred for another 150 weeks (3 yrs) to maybe get to zero - if I can achieve that. I would then have been on pred for 4.5 years which is a long time for my body physically and psychologically.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to choirsinger1986

If it works, it doesn’t matter if it’s slow...and to be honest you don’t how long your PMR will last...nobody does. ..and 4.5years is about average anyway!

Despite what the official guidelines may say, your doctor might telly you , or you may want - your PMR has its own agenda, and it’s very often longer than 2 years.

It takes as long as it takes.

I understand I need to go the distance for as long as it takes - just frustrating taking so long and tired all the time.

I have developed a large tumour on my pituitary gland which I suspect and hope has triggered my PMR, as I have opted to have it removed by surgery. Removing may allow the adrenal glands to get working again - as well as other glands - and correct my double vision.

Here's hoping.

PMRpro profile image
PMRproAmbassador in reply to choirsinger1986

Indeed. Presumably they can't tell what sort of tunour it is until they remove it?

Probably benign but will test when they remove yes

PMRpro profile image
PMRproAmbassador in reply to choirsinger1986

Only if you started with a VERY big gap between new doses. At I day new, 4 days old as the start it takes a month. You are always reducing the gap so it doesn't take as long as you think at first.

However - you may think it is slow but you have no idea how long you will need pred for PMR - half of patients need up to 6 years and from experience I would say a large number of people need 4 to 5 years on pred. It also slows down the tapering process if you try to go too fast and overshoot - often that can mean going backwards. With any of the slow tapering approaches it is very unusual to have such a flare, if you do and stop tapering quickly you can just mark time for a bit and then continue.

You are NEVER reducing relentlessly to zero - you are tapering the dose to find the lowest dose that works for you at the present. You may be lucky and have a straightforward journey but that will put you in a minority - only 1 in 5 patients is able to discontinue pred in a year, rising to 1 in 3 by 2 years.

Thanks for your help 👍

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