1mg or .5 reductions?

[Hopingsail]

Having got carefully down to 5mg Pred (and resting) on Dorset Lady’s Simple Taper - and reducing .5 per 5 weeks since passing the 7mg barrier - then Covid came visiting at tge beginning of Feb. After two (testing +) weeks I felt so rotten I upped to 7.5 and gradually felt improvement.

6 weeks on and I’m on week 2 of 7.5>6.5, having judged a straight return to 5mg was probably unwise. So far so good except for a little groin ache (my weak spot!).

I was intending to resume reducing by .5 at end of this cycle, but reading PMRpro’s repinning of the DSNS scheme I note it speaks of a 1mg per cycle reduction? I’m a bit confused as I have understood that .5 reduction was generally recommended at the lower dosages (10% rule)? Is it that the DSNS cycle is around twice the overall time of Dorset Lady’s?

An advantage of the DSNS scheme is that might avoid fiddly splitting of tabs! But generally I have found .5 per 5 weeks and resting for a couple of weeks seems to work.

Maybe I have just answered my own question!?

[SnazzyD]

I think going with what already works for you is the name of the game. I’d also stick to 0.5mg because you have been through the mill and not that far away from Covid. Move those goalposts by smaller steps and the opposition (perhaps an unfair term for your poor body) is less likely to notice.

[Hopingsail in reply to SnazzyD]

Thanks SnazzyD - I think that is about where I had come to! Living on my own, ideas churn around and writing them out can help!

[Gossiplady in reply to Hopingsail]

hi Hopingsail! Yes, I too live on my own and keeping a diary helps tremendously. On the occasions I have felt a bit down on my progress, to look back six months makes me realise how I have really improved. Keep smiling!

[piglette]

I agree 0.5mg seems to work well for me. Do you think the groin pain might be due to osteo arthritis in the hip? Just a thought.

[Hopingsail in reply to piglette]

Thanks piglette - but don’t think so. It’s more in those pesky muscles and it comes when Pred reduction is challenging a bit and then fades when system adjusts. I take it as a ‘sign to pause’ .

[piglette in reply to Hopingsail]

If it is a sign to slow down at least you get a warning!

[Billiebobdog in reply to Hopingsail]

yes weird groin pain here when I’ve overdone it - it’s very strange

[arvine in reply to piglette]

a few mos ago, I had excrutiating pain in groin, rheumy sent me for MRI on hip, result was 2 small tears in the tissue surrounding ball in hip joint, thus apparently affecting femoral nerve in groin, was given t3 forn pain as no sleep for over a week, took a couple of weeks then settled down, also showed osteo in hip, so I feel pred, weakens muscles, tendons, tissue etc, and concluded that and wear and tear caused those symptons, but to add to that theory, was going to physio, and thinking some of that treatment may have added to that groin pain,

[piglette in reply to arvine]

As polymyalgia is a pain of muscles, they are affected and also things attached to them like tendons! Groin pain is nasty.

[DorsetLady PMRGCAuk volunteer]

DSNS is slightly longer than my basic taper - but whichever you use I would go for the 0.5mg reduction each time. It’s personal choice of course, but if it’s worked previously why change as you get lower…and make reduction bigger in percentage terms.

Splitting tablets is no big deal…. Plus you could also request 2.5mg ones -and then mix and match … until you get to 1.5mg dose

[Hopingsail in reply to DorsetLady]

Thanks so much - will be doing that!

[DorsetLady PMRGCAuk volunteer in reply to Hopingsail]

Apart from the blessed covid [I succumbed a few weeks ago much to my annoyance] how are you nowadays…

[PMRpro Ambassador]

DSNS is getting on a bit! The size of the step originally was for 1mg and even 2.5mg since part of its usefullness was for patients using the enteric coated tablets which can't be cut and at that time there was no 1mg tablet and who couldn't tolerate any plain pred tablets. If you can manage on that size drop, it often keeps the sceptical GP onside as well! But ideal is the 1/2mg step if that can be created. DSNS is infinitely extendable ...

[Hopingsail in reply to PMRpro]

I am getting on a bit too! I shall take it steady on the .5 - thanks for your kind oversight.

[PMRpro Ambassador in reply to Hopingsail]

Well matured ...

[Bcol]

Hi, I use a .5mg taper every five weeks but don't start the taper unless I'm happy with where I am. It's worked well for me had to up things things a couple of times, Covid, CTS etc but the taper has been good.

[Hopingsail in reply to Bcol]

Good - that’s been exactly my approach too. Learned so much from the heroes on here - would be lost if I had to rely on my GP.

[Bcol in reply to Hopingsail]

Yey, it is a brilliant site, but I'm also lucky in having an excellent GP as well.

[crazylady57]

Hello. I know it's so confusing. I asked my GP for 1 mg pred, so I could take what I wanted without trying to split a tablet which always resulted with most of it being over the floor. Hope this helps.

[Hopingsail in reply to crazylady57]

Fortunately we have an old-fashioned pharmacy in the village and I now order meds through them - the pharmacists really understand and readily respond to requests fir a variety of strengths. I also have a pill cutter but there is some wastage with that!

[Rugger in reply to Hopingsail]

I was cutting 1mg tablets in half and to avoid "wastage", if a tablet crumbled, I took the 'crumbs' that day and saved the better half/fragments for tomorrow. I never wasted a microgram!

[Lookingforideas in reply to Rugger]

yep, I’ve always done that chopping business. I should change my username to OCD PEDANT!! I’ve just gone through the steady 1mg barrier - I’ve been on that for over 8 weeks as I’ve been travelling & didn’t want to be chopping while that was going on, but I’m currently home and I’m back to starting chopping tablets again… as I’m being mega cautious… don’t want to fall at the last hurdle … I’m putting each tablet’s ‘bits’ & crumbs’ individually in tiny little ex sample makeup pots and recording the approx grams in my food diary making sure that the overall dose correctly tallies - and I’m keeping score of my weekly average intake too, so the plan is to ‘creep’ gradually downwards over a lengthy period. Does anyone know what the approximate average time is (obviously not if there are any hiccups en route) to get from 1 to 0.5 and then to zero?

[9lives in reply to Lookingforideas]

hi

I’m same as you, downtown 1mg, but have stayed here since January 2022. Starting to reduce really slowly to .3/4 mg. Bit fiddly cutting the 1mg into 4 but I’m getting good at it now. I did try previous to go to .5mg but the body complained!! I was diagnosed in May 2016. Day before Chelsea flower show, as I was going with my sister and was worried about walking. But the 20mg of prednisone worked and we had a lovely day xx I guess we are all slightly different and it’s what ever works for you. As for how long it will take to get to zero , well it takes as long as it takes until the disease decides to abate xx remember we always need to take enough prednisone to keep the inflammation under control, otherwise it builds up again x( as we are all aware).

And to be honest if 1 mg keeps it under control then that’s pretty good in my book. But for now I’ll give it another shot.

Good luck to you x

Carole

[Lookingforideas in reply to 9lives]

thanks for your comment- yes, I think the lower I’ve got the slower I’m going. I did get stuck a few times and I had to raise an odd 1mg now and again and wait a bit before trying again -so that’s why I’m trying to be cautious now as the last thing I want is to cause a flare by rushing it. I’ll carry on mega slowly, by chopping and licking up the crumbs - but also using the ethos of Dorsey Lady’s & the DSNS tapers by dropping in a slightly lower dose gradually alternating between the current and new doses, and being alert to any symptoms raising their heads - it’s an obsession now keeping track of it daily but with weekly and monthly averages too, to cover any slip ups ie ocasional forgotten tablets (or inadvertently doubling up which has only happened twice in 3 years 🤦‍♀️) and make sure the general trend is slowly downwards🙄

[FixThis]

I had a rough go reducing from 5mg and did a few 5-week tapers at .25mg. That worked well for me - reduced and felt good. Around 2.5mg I did a couple .5 tapers. Now down to 1mg getting ready to start a new reduction cycle. I’ll try going to .5 and see how I feel!

This is such a great forum. Thanks all!!!

[Zareda in reply to FixThis]

I’ve been trying to reduce from 1mg for at least a year. I reduce by 1/2mg over a 5 week taper. Ive gotten to a full week of 1/2mg three times now and by the 4th week I can’t move . I feel the pains slowly returning the entire time I’m tapering. So I’m back on 1 mg again and it takes about two weeks to get back where I comfortably live on 1mg. I have a feeling I will be quite chummy with 1mg for a long time. Hope you have better luck.

[PMRpro Ambassador in reply to Zareda]

If I were at 1mg I would stick there and remove the stress of trying to get any lower.

[Zareda in reply to PMRpro]

I’m with you 100%, but the rheumy is on my back about it and is now starting to ration my refills 😡

[Hopingsail in reply to Zareda]

perhaps change Rheumy? It is YOUR body. The last thing you need is PRESSURE!

[Zareda in reply to Hopingsail]

This is my second one…..lol maybe a third? It’s difficult to switch because of wait lists

[PMRpro Ambassador in reply to Zareda]

Then he is a rather silly person! Prof Dasgupta told us he often keeps patients at 2-3mg longer term as it reduces the risk of relapses and a return to a higher dose. If 1mg is keeping the small amount of inflammation from low activity PMR under wraps, then it is far preferable to risking a return to the start, 1mg is associated with no identifiable adverse effects for most people.

[Zareda in reply to PMRpro]

if I could only break through his ego of he knows everything and I know nothing. I have no side effects at all from 1mg but Im at his mercy for the prednisone. My primary just defers to him. That’s why I try to stockpile every prednisone pill I can get.

[PMRpro Ambassador in reply to Zareda]

Cynical me hears cash registers tinkling ...

[Curious1411]

How do you split a 1 mg tiny pill with a pill cutter?

[PMRpro Ambassador in reply to Curious1411]

Above 2mg it is sometimes easier to split a 5mg tablet and add 1mg tablets to get higher doses. It does work and doesn't matter if it is uneven, all that matters is that it is less than the whole ...

[Jigsawlass in reply to Curious1411]

My pill cutter does it v neatly most of the time

[MDT1 in reply to Jigsawlass]

Mine too

[Rugger in reply to Curious1411]

See my reply to Hopingsail above. Good luck! (Sometimes I got 2 perfect halves!!)

[Lookingforideas in reply to Curious1411]

I occasionally get a perfect half or even two with my pill cutter, but more often at least one half crumbles a bit or the split isn’t an exact half). As I’m so low now - (just started to try to go below 1mg) - I work on the assumption that as long as I’m fairy close to a half by using the crumbs - or even scraping tiny bits off the bigger half if it’s much bigger, and adding those crumbs to the smaller half, then I’m averaging my target amount over a few days - so I’m aiming for a few days at 1mg, then a day at approximately a half, then a few days at 1mg, then a day on the remaining ‘half’ - and so on - I’m hoping tiny differences in the split tablets on a day to day basis doesn’t really matter too much, as long as I keep the averages monitored and don’t lose any bits or crumbs. Maybe I’m being too pedantic but it’s worked really well for me so far so I’m sticking with it - and I don’t want to rush the last bit … any suggestions welcome though 😊

[Zareda in reply to Curious1411]

I have uncoated 1mg pills that are scored in the center. They are very easy to break at that score mark and they don’t crumble.

[Dewdrop456 in reply to Curious1411]

Hi there ,I just snap the 1mgs with my fingers. It all balances out.

[LozzaSandstrom]

I find this post so very interesting. I have just had results for another hip xray and nothing more showing than over a year ago but the pain in my groin and top of my leg have increased so much in the last 3-6 months.

I have been on pred 12 months now and I have managed to taper from 15mg per day to 3.5. I do struggle with this a bit mostly in my feet and that absolutely crucifying pain I get in the groin and the top of the leg so maybe just upping the pred a bit might see it improve. I had a prescription review yesterday and they have told me that no, they can't prescribe a stronger painkiller like Naproxen as they may increase the possibility of bleeds and to also stop the Ibuprofen which I am taking 6 a day. Pred sorry to say might be the answer. I hate it, my hair is thin and wispy, I have put on weight (yes I know you can change your diet but thats difficult for me being such a foodie).

So maybe the hip pain is part of PMR and not separate as I have always thought - thanks for posting

[Hopingsail in reply to LozzaSandstrom]

Hi Lozza, The wise advisors on here have a mantra: We are not in a race to zero! - but to as low a dose as we can manage. You have done very well to get to 3.5 in 12 months - I started in March 2021.

For me, the indicator I have identified which tells me that I am pushing my adrenals too hard is (as I mentioned) usually an ache in my groin that heads backwards towards top of my upper-leg muscles. That is the signal for me to pause a week or two until they calm down - then I pick up again (on Dorset Lady's slow-taper - which works to reduce dosage over 5 weeks). The lower one gets the slower the reduction needs to be. Avoiding a flare is a really good idea!

I think that the only way you will know if your ache is your adrenals protesting is to increase your dosage. Maybe go to 5mg for a week or two? There may of course be other things going on in the groin/hips... Best wishes.

PS Sometimes comments questions in what is a long post get missed, so one can get more comments by starting a new thread?

[LozzaSandstrom in reply to Hopingsail]

Wow thats EXACTLY how mine is, but its like a sharp needle pain I cry out its like someone is sticking a pin in me. I will start a new thread thank you xxx

[DorsetLady PMRGCAuk volunteer in reply to LozzaSandstrom]

Have sciatica or bursitis been considered? Or Myofascial pain syndrome-very often associated to PMR/but as Hopingsail says a new post might get more replies -and certainly related posts.

And much as you hate Pred - as we’ve said before not being on enough to control your illness is a complete waste of time -you get the side effects but no benefit. ..and most side effects can be mitigated.

[Pass7 in reply to DorsetLady]

just diagnosed with bursitis. No clue! Waiting for the shot & more relief. Anyone else with hip bursitis?

[PMRpro Ambassador in reply to Pass7]

I do - but if you want to get other replies you need to post it as a thread in its own right Probably only DL and I will see your comment here.

[DorsetLady PMRGCAuk volunteer in reply to Pass7]

Bursitis is very often associated with PMR - but can I suggest you raise a new post -then more are likely you see your question and respond.

No everyone gets notifications of existing posts.

[Pass7 in reply to DorsetLady]

I entered Bursitis & PMR & there is already a thread. Thank you.

[PMRpro Ambassador in reply to Pass7]

That doesn't matter - older threads usually just sort of stop so if you want to hear more, ask away on a new thread, not an existing one.

[PMRpro Ambassador in reply to LozzaSandstrom]

To get from 15 to 3.5 in a year is extremely fast and my suspicion is you passed the dose you needed probably 6 months ago. If you aren't on enough the inflammation builds up. Obviously the NSAIDs aren't doing much and that suggests that this is bursitis as part of PMR. It is your choice - and actually I don't see being a foodie being a problem, I eat far better than a "normal" diet and the things you need to leave out are the processed foods that have little place in a good diet for a food connoisseur.

[Lookingforideas in reply to PMRpro]

Hi there, your comment about getting to 3.5 in a year being really fast is very interesting for me . I was obviously very lucky and actually got to 3mg the end of year 1 without a lot of trouble. However, having said that I only did my very first 2 days at the UK Rheumy prescribed 15mg and then immediately dropped to 12.5 for 8 days, then to 10mg by the start of month 2, as by then I was skipping around like a teenager on ‘speed’ & very manic … my justification to myself for using that rationale was that I had also read the European PMR guidelines which had suggested a starting dosage of about 11.5 or 11.7mg ish? for someone of my weight … (I can’t remember the exact calculations they gave but they are available on line) … which made a lot of sense to me as opposed to an arbitrary dosage for any size of person. Considering children and animals are generally dosed by weight it seemed sensible to me to at least try it and it did work well for me - and that ‘low’ start has kept my overall ‘pred load’ down. I was always alert for signs of increasing inflammation and having regular monthly - 6 weekly blood tests (although I’m not sure how much value is in that particular aspect as there seems to be a lot of suggestions that the blood tests lag behind gathering inflammation ? And that symptoms should trump blood tests ? ).

Anyway, I’m on an anti inflammatory diet for MS and I’m sure (personal view only!) that’s also had some kind of helpful influence on my relatively trouble free taper too - maybe?

So from 10mg I slowed the taper down massively at that point following the guidelines on here of less than 10% decreases and letting it ‘settle’ & I got to an ave 1.5mg by the end of year 2, at which point I think I had just overshot my ‘required dose’ a bit and I started with my first experience of subtle but gradually increasing stiffness, which had been my first sign at the very start - so I knocked that on the head before it got properly painful, with a couple of weeks at 3mg which worked really quickly & then started slowly tapering again. As I approached the 1.75 mg this time I was going really slowly indeed and once or twice I increased back to 2mg when I got a bit edgy about possible stiffness again but I think I was just bordering on the required dose at that point. So I was still dodging around there at the start of year 3 - and I’m now at the ‘get below 1’ stage 3 months into year 4

[PMRpro Ambassador in reply to Lookingforideas]

"European PMR guidelines which had suggested a starting dosage of about 11.5 or 11.7mg ish?"

Not any I have ever seen and I have read most EULAR guidelines. I'd be interested in the link please.

The 2015 Recommendations recommend a starting dose between 12.5 and 25mg and using the lowest effective dose.

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

is the link to the 2015 Recommendations

[Lookingforideas in reply to PMRpro]

I can’t remember but I’ll have a look for the link tomorrow. Yes it was somewhere I read in the actual EULAR article although I’ve just skimmed it now and can’t find the weight related bit 🙄or maybe a EULAR linked article from that one - the figures I used in my post were my approx recollection from my own calculation 3 years ago from the guide I found in there - either in one of the loads of references listed at the end of the EULAR article or the linked articles at the very end and I calculated my own weight in kilos multiplied by the guide per kilo of body weight. I think at the time I was just under 9 stone so I worked it out from that, converted to kilos … I do think that at the time I saved it somewhere, but it was over 3 years ago and my filing system isn’t that good. I will rummage though when I get a chance as I’d really like to find it now. At the time I’d been reading non stop for a week or two (apart from sleeping 😂) and I had a zillion notes - heaven knows where they all are now 🙄. Mañana mañana 😊

[PMRpro Ambassador in reply to Lookingforideas]

To my knowledge there is no weight-related recommendation for PMR - in the 2010 recommendations they stated a standardised dose of 15mg but acknowledged that some patients may need more, less isn't a problem since the dose is titrated anyway and if you need much less you will be able to reduce the dose rapidly. The only weight-related figure I know of is for GCA where they say a maximum starting dose of 70mg related to 1mg/kg body weight and that is for patients with no visual symptoms or jaw claudication and they may be started with pulse therapy of up to 1000mg/day by infusion for 3 days and then switched to up to 80mg orally.

The doses used of pred vary from condition to condition and expert experience. But it is quite unusual for patients with PMR to respond to less than 15mg - and there is no point at all being on too low a dose.

[Lookingforideas in reply to PMRpro]

hi again, 😊

I’ve spent about 3 hours fruitlessly searching for where I found this🤦‍♀️. I’m really frustrated with my lack of a decent way/system to save stuff (I’m mega disorganised) and I definitely read it somewhere that, at the time, I was convinced was ‘official’ - I must have read it in mid January 2020 along with a zillion other articles & items about PMR as it was just pre my rheumy giving me my first prescription in late jan and just before ‘the lockdowns’ - I’m now on a mission to try to unearth it - like a dog with a bone 🙄 but unfortunately I’m too busy today to continue the search right now … its driving me crazy 🤦‍♀️ mañana manaña🤞🥴

[LozzaSandstrom in reply to Lookingforideas]

I remember that feeling of being a teenager on speed!! Yes thats all very interesting, I think I am going to up it and try and cut the carbs, although I find it very difficult to deny myself anything, I have little self control!! Thanks for the reply it was very helpful

[LozzaSandstrom in reply to PMRpro]

No you are right - 100% its my bad choices. I have not had a blood test since diagnosis when of course nothing came up as the blood tests I had had came back negative - maybe I should request another set - what is the blood test or tests you need to see whats happening re PMR please?

[PMRpro Ambassador in reply to LozzaSandstrom]

ESR and CRP are the usual markers for inflammation. But up to 20% of patients with PMR (and even GCA) have markers that are not outside the normal range - that doesn't mean they aren't raised for them but some people simply don't mount the acute phase response as it is called when the body experiences inflammation.

[Golden20]

I’ve learned by trial and error, to listen to my body now and taper by 0.5mg. My rheumatologist wanted me to taper by 1mg. That didn’t work for me. Do what is best for you always. Yes, it may takes longer but it’s not a race. I’ve learnt patience is the key with PMR. I had Covid just before Christmas and had to increase my pred for 10 days. Then tapered by 0.5mg again for a month. I wish you all the best of luck in your journey to recovery.

[mar48]

I was diagnosed with PMR after a shingles shot that I had a reaction to by my GP. Since then any time I get sick or have a vacine (covid shot) PMR seems to get worse. Anyone else have PMR start up after bad allergic reaction. ESR test high but Creatine within normal range. Old doctor retired new doctor says it isn’t PMR. ANY IDEAS? Prednisone worked at low level but new doctor does not want me tomtake it.

[DorsetLady PMRGCAuk volunteer in reply to mar48]

Quite a few say their PMR flares after vaccine -so could be that. But ESR does rise for a variety of reasons, not just PMR, so if you have no other symptoms you’d new GP may be correct.

But if they don’t think it’s PMR have they offered another diagnosis?