Why is rheumy’s tapering schedule so inflexible?? - PMRGCAuk

PMRGCAuk

14,747 members26,944 posts

Why is rheumy’s tapering schedule so inflexible??

Nextoneplease profile image

Hi all, I was diagnosed with PMR at the end of March 2021, started on 15mg pred daily, got down to 9mg by early June but the started GCA symptoms and was put up to 40mg daily. Have now got down to 15mg again but tend to have pain again on the two occasions I’ve tried to go down to 12.5. Rheumatologist has a given me a strict schedule and seems to live in a different universe from you lovely people on here. He says I’ll need to go on methotrexate if I can’t reduce in the next couple of weeks…….Honestly I feel so unsupported by docs, I don’t understand why they’re so inflexible. Anyone got any ideas…..please?? Thank you in advance

73 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

He’s probably following the guidelines, which may work for some people but not all - and they (unfortunately) imply that everyone should be able to get off Pred within a couple of years whether they have PMR or GCA or both. Those of us in real world know that’s not always possible….

The guidelines do however say that the tapering schedule may not suit all, and that the patients wishes as well as the disease activity should be taken into account……but somehow that often gets overlooked.

Is it possible to see another Rheumy who is less intransigent, and may actually have a better understanding of how to treat your illnesses.

Yours seems to one of the ones that has an aversion to Pred, which is why he is suggesting adding in MTX, but if he let you reduce in a more timely manner there may not any reason to add in another drug, with another set of side effects.

Sorry you are having issues with someone who should be helping you.,

Hello DorsetLady :) and many thanks for your reply. Funnily enough I was just reading your very helpful post from some years ago, ‘Information for new patients’ which was great…so thanks for that too.Sadly I doubt I’ll have any joy with a new rheumy as I’ve seen one and had a telephone consultation with another - and both gave me the same ‘reduce every two weeks’ schedule. Sorry, I know I have to think for myself and speak up etc, I think more than anything that my post was a cry of frustration!

It doesn’t help that I have a number of other long term conditions, in fact am on 28 pills a day currently, and all but pred rely on regular administration…..sometimes I feel as though I spend all day either taking pills or thinking about it!!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Nextoneplease

I did wonder if you had other issues as you’re on the AF forum….so I can understand doctors not wanting you on Pred longer than necessary….but you need what you need……and as both illnesses are self limiting, it’s not forever.

The post you refer to is in the FAQs - there may be others in that thread which help as well.

I need to come off the AF forum really as (touch wood) I have recovered from it. Not sure how to go about it though…..I must have signed up years ago!!

I never knew that you could recover from AF. I have just had a Halter test and they said I had AF and I assumed it was forever.

Hi piglette, recovery may be the wrong term but I don’t have AF symptoms any more 😊 Four years ago I needed open heart surgery for valve repair and while they were there they did some sort of surgical procedure for AF - I’m afraid I can’t remember exactly what it was called but it’s worked so far!! (In defence of my memory, I was quite ill at the time).All the best to you and I hope you have at least an improvement x

PMRpro profile image
PMRproAmbassador in reply to Nextoneplease

An ablation? When they work they are great

Nextoneplease profile image
Nextoneplease in reply to PMRpro

Yes, I think so 😊and it has been great so far 🤞

PMRpro profile image
PMRproAmbassador in reply to Nextoneplease

They won't do them here until they have to - because they say too many fail.

Ah, that explains it, it didn't just go away!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Nextoneplease

Underneath the banner which say what forum you are on there are two boxes on right hand side…one is the Write function (blue) the other is a box with a tick in it. Select that, it should ask “do you want to leave” - select yes, and you will unjoin. It should then have “Join” in the box.

Thank you DL 😊 I have figured it out and took a deep breath and left…..!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Nextoneplease

You can always rejoin if necessary…..although hopefully not.

My experience has been the opthalmologist...he is all about saving the eyes...I had one put me on 125mg prednisone per day at the onset of GCA (Maine, USA). Then you have your GP or Internist....save the body...cut the prednisone. Back come the symptoms and blood results (sometimes), and the rheumatologist lands somewhere in the middle. Perception is everything. Thanks to people like DL, Pro, and others....my rheumy (Indiana, USA) now reads...PMRGCAuk material.....yay!!!💖 Our body....should be our call~!

Fantastic!

Yes, Jane, 'tis the truth....and that is why PMRGCAuk is SO IMPORTANT to so many.💖

Thank you for your reply Grammy, I’m sure you’re right - the evidence, such as it is, can be interpreted in all sorts of ways. As it happens, my ophthalmologist tends to the view that I may not have GCA and that my vision problems could have been caused by cataracts - although of course at this stage, he can’t be sure ;) It’s all so unsettling isn’t it - and what’s best, choose one's doc and go by what they say, or follow what your own body says??? Time for bed here in the UK, and hope not to think about it too much….All the best to you :)

So true, especially if you have a laundry list of chronic illnesses...which never stopped me from anything until now. Like you, I'm on many meds, and I don't think I know what is causing what half the time. May it be all the meds? I can only try to stay positive, and I can with 🎵 'a little help from my friends' 🎶 on the forum.💖

cycli profile image
cycli in reply to Nextoneplease

Your own body every time Nextone. No matter how informed or erudite the specialist is unable to comprehend the sheer extent of the helplessness this disease imposes on our bodies unless they have truly experienced the extreme to which it can exert itself. It isn't just the physical pain and immobility. It is the sheer hopelessness and depression the condition engenders. You actually consider giving in and that has never happened in all my life. We were looking into power of attorney because I couldn't sign my name. Pathos. How can they possibly relate unless they have been there.

Nextoneplease profile image
Nextoneplease in reply to cycli

I so agree cycli 😊I have many many and varied illnesses (some more life threatening than PMR) but none more down heartening somehow…..it’s odd. And I too could barely sign my name before pred - I overheard my husband explaining to a neighbour “it’s as though she’s aged 20 years overnight” which is just about how it felt….

Take care and all the best x

cycli profile image
cycli in reply to Nextoneplease

Truly unique. This is life changing in so many ways. Strangely I have come to see this as a positive. I'm even excited at the possibilities offered by this drug that I have to take. I watched my fathers body physically and mentality destroyed by it 40 years ago through ignorant misapplication as they honestly knew no better. They were only trying to help. Knowledge is POWER. Learn. Think. Apply. I've lived 70 years and since I can remember(from about1.5yearsof age) that has been my modus operandi.

I held a 'mental funeral' for life as I knew it up to age 79. I was one cool Grandma with multiple interests; handwork, committees, and travel. SCREECH~that was the end of that (GCA, sight loss), and that was two years ago. After the funeral, with the help of all the people here, I indulge in naps and pick and choose what I do. Easy? NO! Worth it? YES!

Removing as much stress as possible about things we can no longer do honestly does help us feel better. Stress is an actual trigger for many. Like cycli, I've just tried to make the most of it.

I believe I did age 20 years overnight...no kidding!

I hope you draw strength from all the folks on the forum... we are here for you.

👭👩🏻‍🤝‍👩🏻👩🏾‍🤝‍👩🏽👩🏾‍🤝‍👩🏼👩🏽‍🤝‍👩🏽👩🏽‍🤝‍👩🏻👩🏼‍🤝‍👩🏼👩🏼‍🤝‍👩🏻👩🏽‍🤝‍👩🏼 💖

Just seen this Grammy 😊 I’m so sorry for how you felt at 79, but very pleased to hear how you’ve coped since then. I believe you’re still one cool Grandma, despite it all 😎 xOh, and I’m sure I did age 20 years too, although with luck I may have clawed a few of those back since starting treatment ….

All the best to you

Nextoneplease x

💖😎

Grammy80 profile image
Grammy80 in reply to cycli

💖💖

MrsNails profile image
MrsNailsPMRGCAuk volunteer

As we often say PMR hasn’t read The Book or the Tablet of Stone these ‘Tapering Rules’ were written in/on…….Maybe your next Step from 15mg could be to 13.5mg ie dropping by no more than 10% & see how you get on?

At the beginning of my journey l could never get past 11mg - every time l went to 10mg everything would Flare Up again….

You can read My Methotrexate Story in FAQ - l’m on a higher dose of MTX now by Injection and have made it back to 11mg (again) from 15mg at Christmas BUT l feel better too - l was laying in bed until after lunch & just wasn’t firing on all cylinders…..

Now l’m reducing very slowly as per my Rheumatologist (at my pace) & for the first time in 10years l have a Normal CRP

MTX is not tolerated by some people but it does work - l’ve been on it three times - l know l’ll never get to Zero Pred but my lovely (now deceased) Rheumatologist said she’d be happy if l got to 5mg & remained there indefinitely - l’d settle for that willingly!

Kind Regards

MrsN

Many thanks MrsNails 😊 I think I will try to drop to 13.5 but not until about two weeks time as I have a lot going on in life - had lots of anxiety dreams last night - so feel just now probably isn’t quite the right time. Stress doesn’t help PMR does it?!?Glad MTX is working for you and will have a look at your story x

MrsNails profile image
MrsNailsPMRGCAuk volunteer in reply to Nextoneplease

That 1mg extra may make the difference - do it when your ready - there’s no point before as you’re setting yourself up to fail! There are lots of Papers written on various Tapers which you could present to your Consultant…..

I’m technically ‘not here’ but PMRpro could point you in the right direction.

Thanks Pro

Kind Regards

MrsN

PMRpro profile image
PMRproAmbassador

You aren't at the N&N by any chance are you?

I wish I knew where this touching faith comes from that PMR only lasts 2 years and that if the patients struggles to follow a fixed reduction schedule (it isn't a taper, that is neither rigid nor does it have such large steps) MTX is the answer. If it were, they would use it from the start (they don't) and the evidence available is very ropey which is why one top UK rheumy is trying to get funding to answer the question once and for all (I don't think it will but what do I know). It MAY help you get over the steps down a bit better, it MAY get you to a slightly lower dose - but there are no guarantees.

jinasc profile image
jinasc in reply to PMRpro

I think I have missed something here - Bhaskhars 'ten top tips', posted on here somewhere, as I recall says Metho does not help GCA at all. - I could be wrong but............

PMRpro profile image
PMRproAmbassador in reply to jinasc

I know he does. Sarah wants to get funding for a proper trial of MTX to "answer the question once and for all" as Max Yates from the N&N said. But there are a lot of rheumies who believe it does work and use it, mostly I suspect because they don't differentiate it from an inflammatory arthritis - I mean, look at the number of people we hear who are told it doesn't affect joints (the synovium is the joint lining) and there are almost certainly patients who have been misdiagnosed where it might help - or they might have got off pred anyway, we know plenty of 2-3 year journeys. As it is now becoming abundantly clear PMR is a complex and multifaceted disease, they are going to find some patients where it apparently works - but if they lump everyone into one pot they won't get any answers. And they seem to ignore the long term patients - they want to work with steroid-naive patients and that is half the problem with recruitment because most patients have been started on pred by the GP.

At one point it was being said MTX helps in GCA when started in the first month after diagnosis - why should that make a difference? Is it the same as the fact most patients who had delayed diagnosis and treatment seem to have tougher journeys?

jinasc profile image
jinasc in reply to PMRpro

Thanks, that has cleared that up for me. 👍

Nextoneplease profile image
Nextoneplease in reply to PMRpro

What a very good point about them not using MTX from the beginning! I’ll certainly keep that point in my back pocket! Thank you 😊

Hi, since you had a suspected GCA why are they not suggesting tocilizumab? Sorry if someone has already suggested it.

No, no one has suggested this / least of all the rheumy 🤷‍♀️In my latest summary letter (of a very unhelpful- to me - telephone appointment) he clearly gives my diagnoses as PMR and GCA. Should we be looking at tocilizumab?

If I were you, I would go for that father than methotrexate.

Can I ask why?

From everything I have heard about both medications so far, it has a better record of achieving remission than MTX. I don't have any personal experience of it, but I would imagine it would be worth asking a question.

Thank you, I will if they insist on adding something to pred 😊

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Nextoneplease

Problem is TCZ is v. expensive, and in UK is authorised to limited numbers on a cases by case basis (for GCA anyway, but not for PMR) ….and maybe to the Rheumy who shouts the loudest.

Plus over the last year it’s been used for Covid patients, so it’s limited by that as well.

Thanks DL 😊 I just looked it up and a low platelet count can be a contraindication- and as I have that, it may be another unspoken reason why it hasn’t been mentioned….

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Nextoneplease

Could be, haven’t any personal experience of TCZ, hadn’t been approved for use by NICE when I had GCA…but they were trialling it.

cycli profile image
cycli in reply to DorsetLady

My rheumy after my "interesting" consultation wants to set me up for TCZ as a way to help come off the prednisone. He said that they need a biopsy report to confirm GCA diagnosis. Trouble is the time lag now I've been on pred. for 3 months at high dose make any test potentially inconclusive. He's not insisting, in all fairness, as he recognizes the possibility of a procedure that might have no worth. Unfortunately they won't release funds for TCZ unless they have a confirmed diagnosis. Catch 22. I've said if he has to ok; but hold for now. how do we know that I can't reduce down without any help? It's all unknowns so we go with the flow as always.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to cycli

I didn't have any “help”, but what I did have were 2 separate GPs who didn't rush me. The first because she’d misdiagnosed me, so was ultra cautious about reducing too quickly, and a second one who was much more experienced and didn’t have the fear that most doctors seem to have of Pred.

Only saw a Rheumy twice….7 & 10 months after diagnosis…..

personally I think that was probably a bonus.

I've been off of TCZ for 3 1/2 months. After a recent flare, my pred was increased to 40mg again. I'm pretty sure the rheumy will put me back on TCZ next month. After thinking about it, I'm willing to give it a go too. My rheumatologist stopped it because I had cellulitis in June. I'll be watchful, and we shall see what comes of it. I had been on it from September 2019 until June 2021. I don't know why and neither do the Doctors, but nothing seems to work for long. I've made it clear that my sight MUST come first.But...no guarantees.

💖

PMRpro profile image
PMRproAmbassador in reply to TheMoaningViolet

I think it is not yet automatic it can be used first line for GCA despite that being the intention of the company. Initially NICE restricted it to relapsing GCA

Nextoneplease profile image
Nextoneplease in reply to PMRpro

Thanks PMRpro 😊

I am on MTX, which after a slight improvement in the first weeks has done me no favours at all. But while the rheumatologist (we are not on 'rheumy' terms) mentioned TCZ, I had the strong impression that I wouldn't get that until MTX had failed. Matter of cost, presumably.

I can never quite understand how they calculate cost. Surely someone making progress with recovery faster adds up in terms of cost as well. And every new medication comes with its own set of side effects which sometimes means more medication etc. I am sure that MTX works for some people, but it should not be the first choice of steroid sparer solely on the basis of cost.

PMRpro profile image
PMRproAmbassador in reply to TheMoaningViolet

TCZ is not approved for PMR at all but it costs IRO £12K per annum for GCA. MTX is at most a couple of hundred pounds (based on the cost in Canada as I can't access the BNF for accurate UK figures). Obviously you will have to "fail" MTX to be offered the pricier version at that sort of difference!

Nextoneplease profile image
Nextoneplease in reply to PMRpro

Thanks for this, really worth knowing

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

UK prices for MTX - approx

25mg per 1ml injections - £14-16

10mg tablets, box of 100 - £50

TCZ 100mg per 1ml injection - £940

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

MTX is even cheaper than I thought - at 10mg tabs, that is £50 for 50 weeks - though for rheumatology you usually get 2.5mg tabs as standard which are probably more expensive.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

All Tarif Prices -NHS Indicative prices higher..£2.20 for box of 28 x 2.5mg tablets

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

That's about a month's worth so not that much different ...

I know a taper to 13.5 from 15 has been suggested, but I wonder why you wouldn't simply try 1 mg at a time? You may be able to taper at the same rate but with lower risk of withdrawal symptoms. If you have difficulty tapering at these lower doses then a slow taper method is often hepful as it allows a gradual introduction of the lower dose. "It isn't slow if it works."

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

I think the “not more than 10% reduction of current dose” was being applied…so a drop of 1.5mg.

HeronNS profile image
HeronNS in reply to DorsetLady

Oh I see. I never tapered more than 1 mg, so never had to deal with larger taper even from 15 mg, and I was at 7 mg within six months, 3 mg at the end of the first year, with no flares. The only glitch was dropping to 9 from 10, and that was sorted by starting slow taper method at that point.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

Once I got down to 15mg I did 1mg as well until 7mg, then 0.5mg

HeronNS profile image
HeronNS in reply to DorsetLady

That was when I started the .5 drops as well. December 2015. ☹ Actually I did 7.5 from 8.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

Me - Autumn 2014, took me 2 years to get to zero……hopefully you will get there one day 😊

Just been to physio to try and get my arm sorted following shoulder replacement early last year. Because of COVID had no physio rehab, so just followed online info…

Although shoulder itself is brilliant, the muscles around it not! ..so when I get arm in certain positions it sort of twitches and clunks a bit😳..so 3 months of muscle building on the cards…deep joy.

HeronNS profile image
HeronNS in reply to DorsetLady

Good luck - do not overdo it at first. Like a pred taper, slow and steady wins the race.

I'm just a bit cross about my pred situation because I was so well at 2 and it's so hard to get back there. I know, heed my own advice - patience!

Sorry to be dense but I’m getting confused! Do you stay on each dose for a month? Or two weeks when above 10mg, as the ‘official’ schedule I’ve been given by the rheumatologist suggests?Grateful for any advice 😊

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Nextoneplease

We usually recommend 4 weeks, 3 at the absolute minimum, unless you are using a slower taper that takes that amount of time to get from a. to b.

Problem is, if you only stay on current dose for 2 weeks, you are not 100% sure it is enough, a flare can take anything between a few days to a fortnight to materialise.

If you are one of the people it takes longer, you may reduce without realising ....and say if you are 12mg, and then reduce to 11 or 10mg, and the flare begins to build you can't be certain whether it happen at 12mg or 11/10mg...hope that makes sense.

Thank you DorsetLady, I’ll go with 4 weeks I think (just wish I didn’t have to basically ignore rheumatologist in so doing - after all, I’m a good girl, me!! 😂)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Nextoneplease

Aren't we all - 🤦‍♀️

Sharitone profile image
Sharitone in reply to DorsetLady

And I think most of us are sneakily having to ignore rheumatologist's advice, too! I was told on the phone to reduce from 20mg to 15 mg, after 4 failed attempts to reduce!!

What planet are some docs on, Sharitone? I don’t include all of them, obviously….Anyway I’ve just drawn myself a schedule up to and including next May 😂 Organisation has always been a strength of mine and I think PMR and pred (along with my lovely grandchildren 🥰) are going to frustrate that. Still, onward and upward and prepare to adjust my very slow schedule on a daily basis if necessary 😊x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Nextoneplease

“Anyway I’ve just drawn myself a schedule up to and including next May 😂 Organisation has always been a strength of mine and I think PMR and pred (along with my lovely grandchildren 🥰) are going to frustrate that”…..

Very true - on all counts.. so please don’t be too rigid with your schedule - it’s a PLAN - it’s not set in stone, and certainly likely to be disrupted by “life” getting in the way…

accept that, and you’ll be fine!

PMRpro profile image
PMRproAmbassador in reply to Sharitone

Good definition of madness - doing the same thing and expecting a different result!

cycli profile image
cycli in reply to PMRpro

sounds much like my life's been 😂😂

piglette profile image
piglette in reply to DorsetLady

😈😈😈

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to piglette

🤨

You may also like...