Tapering from 30 mg Pred?

[LBM1953]

Hi All. I have just began tapering from 30 mg and first step was to 27.5 mg and all seems OK so far. Had a look on this Forum for (approved or acknowledged) plans for tapering from this dosage and all I have found is the Steroid Taper Application which has plans from 15 mg only and not of much use otherwise. Are there any such plans commencing from 30 mg or is it a "try this and suck it and see" situation? Regards. LBM1953

[jinasc]

PMR, normally the recommended dose is 10% of what you are on. So your 2.75mg is within range.

You can clear the decks for 5 days so you have very little to do and take the drop and see how you feel.

Or just follow the plan of days. There is no hurry to reduce, you are looking for the lowest dose to control the inflammation.

Hope this makes sense to you.

[LBM1953 in reply to jinasc]

Hi Jinasc. Is the 5 days an acknowledged period for any effects of the reduction to normally manifest itself? Regards. LBM1953

[jinasc in reply to LBM1953]

No, not at all, it was just something a group of us thought about and tried it out.

The reasoning behind this was we thought about illegal drugs or smoking etc and they suffered with withdrawal symptoms and realised once your body is given something and it gets used to it, it wants to keep it.

What we found was that if you cleared the decks for the 5 days and the withdrawal symptoms had stopped then wait a week or two and off you go again.

Then we met Ragnar who had worked out a plan. Two more slightly plans were devised. DSNS and Tortoise & Hare. Dr Sarah Mackie was interested and this was the result.

Dr Sarah Mackie a leading Researcher into GCA & PMR has kindly allowed us to inform you of progress being made.

Dr Mackie emphasizes that you should always talk to your own Doctor. We have also stressed this whenever the plans have been sent to patients.

“We have been trying out the Dead Slow and Nearly Stop (DSNS) steroid reduction plan as part of the FACT study protocol.

The FACT study is a very small pilot study, funded by Vasculitis UK and approved by a research ethics committee; this study isn’t actually designed to test different steroid reducing regimes, but is an exploration into causes of fatigue in people taking long-term steroids.

We incorporated DSNS as an option on the basis that we know that DSNS, or something like it, is already used by many patients in the community and because we didn’t necessarily want to taper steroids over-fast in people who were experiencing fatigue.

The study is still ongoing.

So far it seems that some patients find that DSNS suits them well, especially those whose symptoms tend to flare up when they step down their steroid dose.

However, DSNS will not suit everyone. DSNS is just one of various different approaches to tapering the steroid dose, and it has to be stressed that there’s no one-size-fits-all to this – you should always talk to your own doctor about what might be best for you.”

Dr Sarah Mackie, Consultant Rheumatologist, Leeds.

[mloyuken in reply to jinasc]

Here in the States, GP doctors seem to be "winging it"! I got 40 mg initially, then he told me to drop 10 mg each month to a goal of 10 mg. I instead tapered 2.5 mg each week to each goal. Now than I am at 10mg, he tells me to go to 5 mg immediately, then each week drop 1 mg. Goes against your gradual program and especially the 10% reduction goal, and especially the 1 month at a time protocol. Seems like he wants to hit 0 and see what happens.

[herdysheep in reply to mloyuken]

Have to confess I would not be following your GP plan from 10mg down. You have seen the benefits of going in smaller amounts but over the same time. Hope you can find a way to educate him and hold your ground. Avoiding flares is crucial, if you possibly can.

[mloyuken in reply to herdysheep]

I wish pred was OTC, because GP controls prescription pad. Gave me just enough 1 mg. to do 1 month at steady reduction. Guess I will have to complain about flare up to get more, There goes the steady but sure reduction plan. I don't find any forums are protocols here in the States. GP's seem to tolerate a kill the disease and go away philosopy.

[herdysheep in reply to mloyuken]

Until we know what causes the disease, we can't 'kill it'. The only thing we can do is control the inflammation. I hope your GP does some reading, and yes, it is worth pushing the point for slower reduction, to avoid the flares.

[DorsetLady PMRGCAuk volunteer in reply to mloyuken]

Then perhaps you should forward him this - and highlight para (5) treatment and tapering -pmrgca.org.uk/wp-content/up...

[PMRpro Ambassador in reply to mloyuken]

At a guess - a flare! You can't kill a chronic disease that lasts 2 years and more for nearly 70% of patients. He couldn't do it for RA or lupus so why expect to do it for any other a/i disorder.

rcpe.ac.uk/journal/issue/jo...

is a typical sensible approach

ard.bmj.com/content/74/10/1799

are INTERNATIONAL recommendations.

And this article

practicalpainmanagement.com...

has a link at the bottom to the original work by the Mayo at Rochester - and if anyone should know about PMR it is them. They found that only 1 in 5 patients is off pred at 1 year - half need pred for more than 6 years.

No chance of a different, better educated GP? But the links I gave should be convincing enough if he is open-minded.

[mloyuken in reply to PMRpro]

thanks for references. sent the mayo clinic report to the GP and he responded: You can do that if you want. So i will take longer and spread it out.

[PMRpro Ambassador in reply to mloyuken]

If you don't ask ... We WILL teach them to do it right!!!

[Slowday in reply to mloyuken]

I agree with herdysheep. It has taken me 2 years exactly to the week to get down from 60mg to 2 mg. The further down the ladder you come the slower you have to climb. It has taken me 9 months to come down from 4.5 mg to 2mg and that is without any flare ups. My rule of thumb is roughly 0.5mg reduction per month or slower if you feel any semblance of a flare up. Unfortunately for me the lower the dose the higher the fatigue as the body is screaming out for more, more, more. Cold turkey is a big barrier you may well have to face. Good luck with that!

[DorsetLady PMRGCAuk volunteer]

My plan can be used from any dose (as can any) - but most/many people don’t usually require a slower plan until they get to lower doses - healthunlocked.com/pmrgcauk...

And as jinasc says - use the not more than 10% of existing dose reduction

[Charlie1boy]

Hi.Can only tell you what I did. Three to four weeks on 30mg. That more or less cleared the pain. Then 2 weeks at 25mg, 2 weeks at 20mg, 2 weeks at 17.5mg, then to15mg.

Thereafter I slowed down considerably. I followed the 10% rule for tapering from then on, usually staying at each level for at least 4 weeks, sometimes longer; it depended whether or not I still had any pain symptoms.

I hasten to add we are all different in how we react to pmr and pred. If you have any doubts, you should contact your GP.

Good luck

Paddy

[MrsNails]

Do you have PMR/GCA or both? A 10% Reduction is Standard but 30mg of Pred is high for PMR if it is for GCA it’s a low dose so you should be guided by your Doctor. Our Tapering Plans are for lower doses when it can become an issue to taper.

In the first instance you should Consult your Prescribing Doctor.

[LBM1953 in reply to MrsNails]

It is PMR as far as I know. No GCA symptoms. GP wanted me to take the 30 mg to try and get rid of all symptoms but it did not make any difference from 25 mg as far as the residual symptoms were concerned, (shoulder discomfort that is probably something else highlighted by the PMR).

[MrsNails]

30mg should make a big difference to PMR l’ve had a Course of 30mgx1week; 20mgx1week; 15mgx1mg then returned to normal tapering regime. Maybe it’s not PMR? As that sort of dose should improve the symptoms. You really need to discuss it further. Have you had any blood tests?

[LBM1953]

It really has made a difference. We were not sure about PMR at first because 20 mg made no difference at all, but an increase to 25 mg really did make a difference. Four weeks ago I could hardly walk. Yesterday I did 5 miles in this heat at less than 16 minute mile split times, and am doing this almost daily. Blood tests have been weekly and fortnightly going forward. CRP was at 106 on 18th June and was 1 on Friday last week, (16th). PV has gone from 2.06 to 1.66. Blood sugar has increased though (due to steroids) and being managed.

[MrsNails in reply to LBM1953]

I can only reiterate what DorsetLady has said, a Five Mile Walk in yesterday’s heat?….

That would be unwise for a fit person as yesterday an Amber Weather Warning ⚠️ was issued.

[DorsetLady PMRGCAuk volunteer]

Yesterday I did 5 miles in this heat at less than 16 minute mile split times, and am doing this almost daily.

Really??…..not sure you’re taking your diagnosis/illness seriously ….PRED does not “get rid of it”, it only controls the inflammation produced by the underlying disease.

Exercise is good, but in moderation…see this -healthunlocked.com/pmrgcauk...

[LBM1953 in reply to DorsetLady]

I assure that I am taking it seriously but as I have not been having any adverse effects from my walks I am not sure why I should not carry on with them? I have read that exercise is good but only if you don't overdo it. I am not going to sit around if I don't have to. I am not walking today because I have washed the car and am pottering around the house and garden so that is my "exercise" for the day. I do what I can............

[DorsetLady PMRGCAuk volunteer in reply to LBM1953]

I agree you should do what you can…and if you played golf regularly and walked around the course, then your walking capacity is inevitably better than most on here…..

but if you have PMR you do have a serious systemic illness, and walking 5 miles in the blazing sun (if it was as hot where you are as it was here yesterday) then to me that's not being particularly sensible…..but just my opinion.

We will probably continue to differ on that one…but you know your body better than anyone else so do what’s best for you.

[LBM1953]

Before Covid we holidayed a lot, in Mediterranean climes, and we walked extensively in temperatures similar to what we are experiencing in the UK now so I am (relatively) used to the heat. Also 50% Asian extraction (dunno if that makes a difference). Under normal circumstances I would be on the golf course today, heat or no heat, pushing a 25 kg trolley and swinging a golf club (too many times probably)!

[PMRpro Ambassador]

Above 15mg the usual advice would be to have taper steps of not more than 10% of the current dose - The standard approach to PMR is a starting dose of 15-20mg. The theory has been that only PMR responds so clearly and speedily to a moderate dose of pred so it has been part of the diagnostic procedure. If you go to 30mg that potentially clouds the view - other things will respond to the highers dose so there is no information from that. And it is extremely unusual for "just" PMR to need that much - needing that much really is a sign that a rethink over the diagnosis may be needed and more investigations.

Your 5 day question to jinasc - that's a how long is a piece of string question. If the return of pain is due to the change in dose, steroid withdrawal rheumatism, then it usually starts immediately you change the dose and improves over following days, It may just be briefly or for some people it can last couple of weeks or more. It is likely to be worse with bigger steps down. If the new dose is only slightly too low it can take a month - sometimes more - for the inflammation to build up to a level that will be noticeable again. If it is a lot too low, the bucket of inflammation will be filled by the dripping tap much sooner.

Funny - I live in Italy - you can tell the tourists! Locals go out in the early morning, walk on the shaded side of the street and go home from 12-3 (we're a long way north) - tourists go out later and sightsee over lunchtime when the shops are shut.

[Purpleazalia]

It is a bit of trial and error to find what suits you as an individual.

I have pmr and was started on 40mg/day reducing by 5mg per week until 10mg. Then reduce monthly by 1mg. I was fine with the 5mg weekly reductions until I dropped from 15 to 10 when the symptoms started to return. My doctor advised me to go back up to 15 (or 20) which is where I began my slower taper.

If it's working fine, carry on! You will get to know your temporary 'withdrawal' symptoms (usually during the first week if you have any) and the signs of returning pmr symptoms which indicate you have probably gone too low for the current level of pmr activity.

[LBM1953]

25 mg gave me the relief and optimal. 30 mg was no more benefit, so I consider that I'm not really a 30 mg starter, and from what I have read 25 mg is not uncommon for PMR.

[PMRpro Ambassador in reply to LBM1953]

In the 12 years I've been involved, I'd say that not that many patients with PMR are started on 25mg. It is only since the 2015 Guidelines were published that 25 mg has been mentioned much although 25-30mg was common maybe 20 years ago before they got all iffy about too much pred. The 2015 Guidelines consider 25mg to be the top of the routine range.

[Meggsy in reply to LBM1953]

I started on 15mg but needed to go to 25mg to clear the pain three and a bit years ago. I tapered by 2.5mg to 15 then 1mg to 10. Couldn’t get to 9 so from 10 have tapered by 0.5mg. Have had a few glitches along the way and presently on 3.5mg and about to begin a slow taper to 3 with fingers and toes crossed. I’ve been here before! All the best. 🌻

[LBM1953 in reply to Meggsy]

Hi. Just a quick we question. Are there 0.5 mg tabs? I thought the smallest tab was 1 mg?

[DorsetLady PMRGCAuk volunteer in reply to LBM1953]

No 0.5mg…….but in countries where 1mg and 2.5mg are available you can mix and match until you get to requiring 1.5mg or 0.5mg. Not so easy in countries where 5mg is smallest - like SA, Cyprus- just to name a couple.

[LBM1953 in reply to DorsetLady]

Ta. 👍

[Meggsy in reply to LBM1953]

I cut the 1mg in half along the centre line with a pill cutter from the chemist. I do a few at once so I don’t need to do it daily. Same with the 5mg when I need 2.5mg. I use 2.5 + 1 for my 3.5 dose to save my ones as I will need them when I am on 3 & 2mg. I am in Australia and not sure whether there are 2.5mg tabs available. I have a repeat prescription for 5mg x 60tabs so might a well use them up.

[LBM1953 in reply to Meggsy]

I bought a pill cutter to cut 5 mg tabs but all it does is shatter the pill into bits!! Now being prescribed 2.5 mg as well as 5 mg so saves me messing about. The web says that the smallest is 1 mg but this must be incorrect if DorsetLady is being prescribed 0.5 mg.....

[DorsetLady PMRGCAuk volunteer in reply to LBM1953]

I never said I was prescribed 0.5mg - not sure where you got that from…

Must have misread - “No 0.5mg” was my reply - meaning no there aren’t 0.5mg tabs.

[LBM1953 in reply to DorsetLady]

Apologies. Just assumed that as you said that there were 0.5 mg tabs you had been prescribed them. ☹️

[PMRpro Ambassador in reply to LBM1953]

What sort of tablets are you on? Are the 5mg ones plain white or red?

You can cut plain white ones and with a bit of practice it is easy enough - maybe try a different pill cutter? My husband has the same design, bought from the same pharmacy but I cannot use his!

You must NOT cut the coloured enteric coated sort - and they will definitely shatter if you try because the outside is very hard. Enteric coated are only available in the UK.

[LBM1953 in reply to PMRpro]

I have 5 mg white and 2.5 mg gastric resistant. I don't use 1 or 0.5 mg yet. It's just I thought 0.5 didn't exist and the 1 mg are so small that I thought you couldn't split them (or at least the gastric resistant ones are).

[PMRpro Ambassador in reply to LBM1953]

You must NOT cut the GR anyway. I wish I understood the rationale of handing out a mix just to get 2.5mg tablets - the two types of pred are absorbed at very different rates. And 2.5mg plain pred is available anyway

[LBM1953]

I started on 15 mg with no benefit. Increased to 20 mg with no benefit. Increased to 25 mg and bingo. 30 mg made no difference. So I was really at the top of the 2015 PMR Guidelines.....

[Susan1705]

I am currently tapering from GCA diagnosis and have gone the starting level of 60 and have moved down 30mg, lowering 10mg every 2 weeks and will move from 30 to 20. I was on 30 two years ago with PMR as well and moved to 25mg and drop was fine. You don't notice so much at higher levels. The drop from 7mg to 6 was much worse. It is about finding the right level that manages the inflammation.

[jazzgirl80]

I tapered from 30mg. Reducing by 5mg. I am now on 2.5 as I struggled from 10mg to 5mg. I think it's trial and error, it's individual.

[Bcol]

Individuals are all different and in the end it will be what works for you. I started on 15mg, after a few days a new doctor reviewed my inflammation markers and bumped me up to 30mg for 5 days, then 25mg for 5 five days then 20mg and I've tapered down on the five or seven week taper plan since. My pain pretty much went in the first week, though pain free didn't mean anything back to normal. Had one bumpy spell where I put myself back up a couple of Mg for a week and are now on the 6mg to 5mg taper. On these lower levels (7mg downwards) I have increased my time on the lower dose for an extra two weeks before I think of starting the next taper. I am back walking the dogs, took me well over three months to get to that point, but I certainly wouldn't be walking me or them during the day in the present heatwave Totally against all medical advice, both human and veterinary. We are out at around 04:00 in the morning when it is very pleasant and then again last thing at night.

[Michdonn]

Hi I finished tapering from 30mg last October. Please do not get discouraged it should not take anyone as long as it took me. A couple of important things first follow DSNS tapering method; second try to reduce your taper by no more than 10%. Try to stay active, don't over do it, that was my problem. Stay positive and smile, believe me it helps. Good luck on your PMR journey, smiling at you, you can do it!😊