Between a Rock and a Hard Place!: Hi there. I could... - PMRGCAuk

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Between a Rock and a Hard Place!

Kendrew
Kendrew

Hi there. I could really do with some counsel again please. Having suffered a flare at 2.5mg after returning to work, I eventually had to increase to 12.5mg and I'm now on 11mg. I had a telephone consultation with Prof Dasgupta last week, and his report says; "I feel reassured that at the moment she does not have active PMR symptoms."...... despite me saying I still have intermittent aches and pains in my arms & legs, hip girdle and sometimes, my neck & shoulders. He felt this was all steroid related. Could it be?? He's given me the previous tapering schedule that got me down to 7.5mg before, but I'm concerned my symptoms may get worse rather than improve! Previously, I felt rubbish with side effects of steroids but had no muscle or joint pains. This is the taper schedule he's recommended.:- 10mg daily for 3wks. (10mg, 10mg, 7.5mg) on 3day rotation for 3wks. (10mg, 7.5mg) alternate days for 3wks. 7.5mg daily...... and; "....thereafter in the same pattern in future in a gradual, slow and steady manner"......whatever that means??? I know from all I've learnt here that I'm probably going to be told this taper regime is too fast but I don't want to anger the Prof by ignoring his advice (I've already experienced that once, when he found I'd increased my steroids independently!) So!....what's to do??? As always, any advice, gratefully received.

70 Replies
oldestnewest

There will be more experienced people answering soon. But what concerns me about the taper schedule you've been given is the difference in size of doses you are suggested to take while you taper. Could you look up the slow taper methods and see if any of then take you more gradually down to roughly where Dasgupta wants you in a similar time frame? Basically I think he's giving you about two months to get from 10 to 7.5? Could you ask him if you can slow that down somewhat and go from 10 to 8 in two months by using a slow method like Dead Slow Nearly Stop. If you use the 4 day start, rather than the 6 day one, it takes a month to taper one step. It is recommended by everyone that the drop be no more than 10% of the dose so it is worrying that the supposed world expert is recommending a much larger drop than that. In fact below 10 mg many of us do better by tapering only .5 at a time, and often taking up to six weeks to do that. The lower the slower.Remember what PMRpro said long ago and I've repeated many times, "It isn't slow if it works".

You'll end up with a lower lifetime dose of pred if you don't trigger another flare.

Kendrew
Kendrew in reply to HeronNS

Thankyou for your response. I agree with everything you said. This regime worked last time as far as 7.5mg and then with hindsight, I realise things began to start slowly unravelling again. I really want to get this right this time as I don't want to start a downward spiral of 'yoyoing' with doses! I like the idea of DSNS 4day start. Thankyou for responding.

The 'problem' here is you are having advice from The Prof but feel it's against what you think may work & what generally we would consider too extreme.....So, where do you go from here? I'm just about to listen to the Prof talk on Diagnosing PMR & think Pro is on as well, so we can chat to you later.

MrsN

Kendrew
Kendrew in reply to MrsNails

Ok. Thankyou.

Sorry Kendrew if this is a stupid question but does he mean actually taking the steroids now are actually the cause of this pain as in side effects or damage they may have done or trying to taper?

Kendrew
Kendrew in reply to powerwalk

I'm not really sure now you ask. I interpreted as it being the steroids causing side effects, that amongst other things, are manifesting as the discomfort I'm currently experiencing. To be honest...I'm quite confused at moment.

powerwalk
powerwalk in reply to Kendrew

With you there, its all so confusing at times trying to do things for the best. How are you meant to know whats casing our pain if the steroids are part of the problem. I really hope you get some of it sorted.

Kendrew
Kendrew in reply to powerwalk

Thankyou......and thankyou for taking the time to respond.

I totally sympathise, it has taken me over two years just to get a diagnosis as apparently I am too young at 53 to have GCA, but records say it can manifest at 50? I don't desperately need a label but it is the swinging between Complete certainties and then the grey vagaries that cause me endless confusion. Tapering down my steroids has been a negotiation as dropping by 10 mg of Prednisolone in one go has in the past been too harsh and lead to significant set backs so will not go faster than 5 mg now no matter what I am urged as I live the consequences. I do not dismiss the expertise of the professionals, but consensus seems elusive.

DadCue
DadCue in reply to powerwalk

"does he mean actually taking the steroids now are actually the cause of this pain?"

This is not a stupid question. In my opinion that is exactly what happens. Steroids taken long term will replace the problem of PMR with the problem of not being able to taper off steroids.

Both problems are painful and one mimics the other.

powerwalk
powerwalk in reply to DadCue

Honestly some days you just dont know where you are. Thank you.

DadCue
DadCue in reply to powerwalk

I know the feeling ...

I have struggled with trying to decide whether or not prednisone was actually the problem. Over time the nature of my rheumatology visits changed. At first the visits were about how to manage PMR. Over time, the focus of my visits became more about how to get off prednisone.

Trying to decide what causes what is a huge dilemma for me. I was taking prednisone for twenty years before PMR was diagnosed. My ophthalmologist noted that I was "skilled with tapers". However, the tapers were always high dose ... short term. I could always taper off.

Relatively low doses ... long term are a real pain.

powerwalk
powerwalk in reply to DadCue

Yes, Totally different ballgame!!

DadCue
DadCue in reply to powerwalk

Between a rock and a hard place!

I do not believe that pred normally causes a side effect of the very condition it is treating! We do, however, sometimes get muscle wasting and that brings its own problems. Do you think that's what he means? Never mind, to control PMR pain and discomfort you need what you need. Muscles can be brought back to strength by physical exercise. Never extreme, just a gentle but regular use of your muscles. A walk, a set of physio or yoga exercies, tai chi, that kind of thing. Never overdoing it because the muscles are intolerant of what might in other circumstances seem quite normal vigorous exercise.

Kendrew
Kendrew in reply to HeronNS

Thankyou. Yes....definitely feel I have some muscle wasting but not sure if that's what he meant. These telephone consultations are just so poor for being able to get across what you mean. I hate them. Xxx

DorsetLady
DorsetLadyPMRGCAuk volunteer

Getting from 10mg to 7,5mg within 6 weeks might be doable, with an additional 3 weeks at 7mg making overall of nine weeks but I’m not quite so sure about the 10/10/7.5 scenario - but it does work for some. I guess you can only try.

For future, I hope he not advocating 7,5/7.5/5 - that might be a tad ambitious - but you’ll have to see.

Good luck

Kendrew
Kendrew in reply to DorsetLady

That 7.5/7.5/5.0 is exactly what he advised me to do on my previous taper. I did what he'd advised and I now feel with hindsight that it was at 7.5 that things began to go wrong. That would back up the idea that the taper was too quick. I really don't understand why he's taking this path with me and nothing he's advising me seems to reflect his so called enhanced understanding of the condition.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Kendrew

As PMRpro has said below - not sure he’s on the same wavelength as us! As we know problems can start around 7.5mg when the Adrenal issues kick in - so smaller steps are required from then on....something he doesn’t appear to acknowledge.

I know you don’t want to rock the boat , but once you’ve got through the initial taper (🤞) maybe you could adapt the second one to a different form - DSNS or mine!

When you get nearer to that, and have been given a timescale by Prof. perhaps we can work something out!

Kendrew
Kendrew in reply to DorsetLady

Thankyou. Yes, I'd very much appreciate that. I'm so grateful to you all for your help.

PMRpro
PMRproAmbassador

I've just sat through his webinar - not sure what world he moves in but it isn't the same as the average PMR patient. In one breath he told us patients should be referred to a rheumy within 1-2 weeks - and later said that there weren't enough rheumies for that ... And told us that paracetamol should be used for pain relief rather than start the patient on steroids - two pointed out paracetamol and NSAIDs don't even TOUCH the pain but he was insistent they should be used to reduce the dose of pred.

You know my thoughts on that taper approach - and look where it got you last time.

Kendrew
Kendrew in reply to PMRpro

As I just said to DorsetLady, he doesn't make me feel like I'm in the hands of a leading authority! I know from all I've learned from yourself and the other experienced people here that the tapering regime he's giving me is too rapid, so I will be taking it much slower. I really want to minimise my chances of a flare happening again. I find I'm much more able to confront him with concerns and question his reasoning in a f2f consultation, but telephone consultations make it so much more difficult. He wanted me to take amitriptyline for the pain and discomfort and never mentioned paracetamol. Obviously I know now that paracetamol wouldn't work for PMR pain but his advice often seems contradictory.

PMRpro
PMRproAmbassador in reply to Kendrew

It certainly was today!!!

Pastit
Pastit in reply to PMRpro

This whole issue is confusing, what I am more concerned with is the statement or the issue that steroids that we take can cause the symptoms of of PMR. Something not quite right here??

Kendrew
Kendrew in reply to Pastit

I understand what you're saying. I think maybe because withdrawal after a taper can also cause aches and pains...he was referring to that? I'm baffled if I'm honest and feeling a quite frustrated with it all. The only advice I get that makes any sense is from this community. Thank heavens for it's very existence.

Pastit
Pastit in reply to Kendrew

I agree, this community has certainly helped me a great deal, unfortunately my local doctors do not really know enough enough about it. My last flare 6 months ago took me back to 15mg. and the doc said we better get you back to a consultant. I am still waiting. By my own decision to do a quick taper, I am on 3mg.

PMRpro
PMRproAmbassador in reply to Pastit

I think he meant poor adrenal function, withdrawal and long term steroid myopathy can lead to aches and pains. But if he took the time to talk to his patients and, above all, listen to them, he would probably hear them say that most of us can tell the difference. I certainly can! The slide that showed the features of PMR, GCA, RA, red flags was excellent, absolutely spot on for me in terms of a PMR diagnosis. But he would probably refuse to consider me as I had an insidious onset of the shoulder stiffness, followed by leg weakness that really was early signs of claudication and only then did I wake one morning after a very stressful medical incident unable to move and I never had blood markers out of the normal range. But an ESR running in the upper teens is very high for ME personally even if he accepts it as fine. The scoring algorithm is also fine as far as I am concerned - I score 6 without any difficulty - but I don't get in the door to start with because he won't have it the ESR/CRP being normal is not a primary factor.

I agree - all far too black/white. In a disorder that it is becoming increasingly apparent has several version, you have to move to technicolour!!

Pastit
Pastit in reply to PMRpro

Very interesting. Since I have been on this forum, 6 years plus, I am convinced that I had PMR even though my inflammation markers were very low. I had the clastic symptoms of shoulder pain, could not move my head side to side without extreme stiffness and I couldn't lift my legs high enough to get out of a car properly. I haven't got those symptoms now, but can't seem to get lower than 3mg, if I do, I eventually develop a flair after a few weeks even after a slow taper. What I do experience is pain over my lower body when in bed after a few hours. They don't fit the PMR condition because I do not get the stiffness in neck or pain in shoulders. It is very strange, and the doctors haven't got a clue, all they offer is pain killers like gabapentin which had terrible side affects. The only pain killer which slightly helps is codeine and as we know that is addictive and constipating so I resist taking it.

PMRpro
PMRproAmbassador in reply to Pastit

Have they looked at late onset spondyloarthropathy as Dasgupta suggested yesterday? But where is the problem accounting for not being able to get below 3mg? My rheumy here admits he has had a lot of patients on pred for a long time at low doses - I'm unusual because I can't get down from 15mg at all at present. I did get down to 5mg with no problems for quite a time until more cardiac related events sent me back to higher doses since the cardiologist said she couldn't offer anything better. I definitely struggle for a long time after a flare - in fact, each one is like starting from the beginning but each one is a bit different from the others.

Pastit
Pastit in reply to PMRpro

No, they haven't looked for late onset spondyloarthropathy, I will pursue it. I agree that my PMR flairs appear to be slightly different each time. The flair about six months ago gave me shoulder pain, not as bad when it all started, but I also felt that I had been kicked by a horse in the backside. It all went a way very quickly with 15mg of pred for a few days. I then dropped to 10mg and was ok on that for two weeks. I then did a very quick taper over 6 months to get to 2mg which was too low. I appear to be more stable on 3mg for the time being. Incidentally to my cardiologist, said I require a replacement heart valve, but I do not experience symptoms. I have had an angiogram and my arteries or ok. Work that one out if you can. I'm a retired professional engineer, and our moto was "if it isn't broke don't fix it" but the cardeo guy said its putting my heart under strain. I can walk 3 miles with no pain and do not get shortness of breath. Quite a dilemma really, especially with Covid widespread.

PMRpro
PMRproAmbassador in reply to Pastit

If I ever get to 5mg again and am doing well - I will accept that happily!

Pastit
Pastit in reply to PMRpro

I am sure you are correct.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Just watching a webinar of C19 hosted by ZOE - company doing the Covid symptoms survey in UK.

Kendrew
Kendrew in reply to DorsetLady

I'm watching it too!

Yes I watched it too. Interesting info on the vaccines. It’ll be available on YouTube later for anyone who missed it streaming live.

Bcol
Bcol in reply to PMRpro

I was also watching the webinar and was really quite surprised at his approach. He spoke in a very black and white fashion and leaving no room/place for the possible individuality of the patient, heaven forbid that patients needs/requirements may be different. Have to be over 50 etc. I am very definitely not an expert in this area but what he was saying seemed to be very, very different to the actuality of the users of this forum.

PMRpro
PMRproAmbassador in reply to Bcol

See my reply to Pastit a bit further up ...

I would be in a quandary like you Kendrew. The Prof is absolutely cutting edge - tapering is like fine tuning a violin. I would be tempted to do exactly as instructed and just see if lo and behold it works. He is responsible for so much progress in the field of our diseases. Then again, all my instincts agree with the advice you’ve had and your own sense of what will work.

PMRpro
PMRproAmbassador in reply to SheffieldJane

But it didn't first time round SJ - and I'm beginning to wonder if the cutting edge is getting a bit blunted ... Sarah is way ahead ...

SheffieldJane
SheffieldJane in reply to PMRpro

I wonder if they get kind of impatient because things seem so obvious to them. Perhaps a sabbatical and a book is called for.

PMRpro
PMRproAmbassador in reply to SheffieldJane

Maybe - but listening to him yesterday he wasn't in the same world as most patients. Whereas Sarah does have a better idea what we go through and always listens to the patient input - when we say something that is unfamiliar to to her she always checks it out, even if she thinks we are crackers!!! And a few times has come back to say "you were right!"

tangocharlie
tangocharlie in reply to PMRpro

That's my thoughts. It seems Dr Mackie and Dr Dasgupta have opposite opinions on things, and I know who I believe. I cannot understand any of the logic of what he has said to Kendrew, other than reading through the lines he thinks PMR has now magically gone into remission because a fixed time is up and she is taking Pred needlessly! If it were me I'd want to question where he has got this theory from as it's a new one on me. And if he now knows something we don't then he really ought to promulgate it through the normal published papers route not pluck it out of thin air

PMRpro
PMRproAmbassador in reply to tangocharlie

He didn't approve of the patients using slowed tapers at all originally and then it suddenly appeared in his menu using Ragnar's original approach over 3 days but using a far larger step down at times though he did start with 1mg steps at about 8mg. What I don't get is why he is now pushing using it for 2.5mg at a time over 3 days which we all know from experience is too much.

tangocharlie
tangocharlie in reply to PMRpro

I think someone needs to ask him the reason for this change of approach as it goes against what he himself wrote in the 2015 EULAR guidelines which are still valid.

Kendrew
Kendrew in reply to tangocharlie

He did say in the report he sent me that he was "reassured that I don't have active PMR symptoms"!! Not sure what I actually said to make him think that though, because clearly somethingis happening and even if it's not PMR, it needs addressing! I'll definitely contact him again if things don't improve.....he said at the end of the repirt that he'll review me again in 6months time!..... that's a very long time.

Kendrew
Kendrew in reply to PMRpro

Who is Sarah please??

PMRpro
PMRproAmbassador in reply to Kendrew

Prof Sarah Mackie, Leeds. Michelin 3* rheumy (worth a journey ;) but doesn't do private and LONG waiting list)

Kendrew
Kendrew in reply to PMRpro

Thought that's who you meant. Wish I'd stayed living up in Leeds! GP passes the buck back to rheumatologist whenever I ask him anything and just want a rheumatologist who'll work WITH me and discuss options so we can make decisions that are mutually acceptable. Things really need to change!

PMRpro
PMRproAmbassador in reply to Kendrew

Rod Hughes is on a par and much more accessible for you. He worked with Sarah on OMERACT stuff - that's how I met him.

I find this mind boggling. I could never do a taper like this. Rheumies never understand as they don't suffer from pmr themselves. Mine let's me do my own taper, 0.5mg every 1/2 months and my GP prescribes what I want along with regular blood tests.

Kendrew
Kendrew in reply to diana1998

It's good to know I'm not totally daft for feeling insecure about my rheumatologists decisions. Thankyou for responding.

You are not.... I'd be screaming if I ever managed to get to 2.5mg and then had to go back up again. So frustrating for you and bad luck. That's why a slow taper is the trick. My rheumie gave me a slow tapering programme method if I needed it which I've not used yet, that was 4 years ago! I'm a tortoise!

Kendrew
Kendrew in reply to diana1998

Haha! That made me smile. I must learn to be one too! 🙂

diana1998
diana1998 in reply to Kendrew

It works better than being a hare, trust me. 👍

Who prescribes your prednisolone i.e. is it Dasgupta or your GP? And, if the latter, would Dasgupta know if you "adjusted" your tapering programme to suit you, as opposed to him? Just a thought ..................

Kendrew
Kendrew in reply to borednow

Professor Dasgupta prescribes it but I did take matters into my own hands and increased dose when I started with this current flare......he wasn't happy!! However, I know from all the expert advice from those of you who are 'in the know' because you're living with it every day, that his taper is too fast and I will be adjusting it. I don't want another 2yrs to elapse to just find I'm back to starting dose again!!!

borednow
borednow in reply to Kendrew

Well done you! My GP leaves me to it - something for which I am becoming more and more grateful after reading about some of the high handed attitude of many a GP and Rheumy. Will keep my fingers crossed for you ..........

Kendrew
Kendrew in reply to borednow

Thankyou.

I saw the Dasgupta webinar. He did acknowledge the importance of the patient opinion at one point. In fact, almost everything he said fitted my own experience with the locum GP who diagnosed me.

I too noted the inconsistency. When he was talking about paracetamol I took it to mean pre-diagnosis of GCA - but I may be confused.

My rheumatologist wanted me to drop from 10 to 7.5 in one go. I refused and agreed a very slow taper with my (normal) GP which is working. The rheumy is still 'my' rheumy but I've got a good relationship with my GP.

As regards 'will Dasgupota know', I guess it will be on your record which he will be able to see. Whatever!!

PMRpro
PMRproAmbassador in reply to ChinaWuntoo

No, prediagnosis of PMR, it wouldn't be safe to allow a patient with signs of GCA to try paracetamol/NSAIDs, the risk to their sight would be too high. It was for plain uncomplicated symptoms of PMR. Yes, there is a place to try ordinary pain killers to see if they help. But the primary point that both Lorna and I tried to make is that PMR patients almsot never get any relief from such an approach - so it is NOT likely to make a difference to the pred dose at a later stage either.

I didn't mention that one lady told to use ibuprofen took 3 doses and ended up in the ED with a coffee grounds gastric bleed. And another was persuaded to use paracetamol rather than pred at low doses because the GP was convinced the pain was due to OA. Three weeks later she had routine bloods done - which showed such elevated liver values she had an emergency ultrasound for fear of cancer. She stopped the paracetamol - back to normal in weeks. Paracetamol is a risky medication used at close to maximum dose in elderly patients.

MrsNails
MrsNails in reply to PMRpro

I’m sure everyone Pre Diagnosis of PMR had hit the Paracetamol/and/or/Codeine with Anti Inflammatory’s thrown in for Good Measure, l know l did!

I think the point he was making was the the Setting Up of Fast Track PMR Clinics to be seen within one to two weeks without starting Prednisolone but only taking Paracetamol Based Meds in the meantime.

PMRpro
PMRproAmbassador in reply to MrsNails

Yes - but that ignores the fact that he is suggesting setting up something for a VERY common disorder, he said that himself, that they haven't managed to do for GCA which is a very uncommon problem. Many of us say it is impossible to get a GP appointment in 1 to 2 weeks at any time, never mind at present. He went on to say that you couldn't send all PMR patients to a rheumy because there aren't enough to do it. So which does he want?

MrsNails
MrsNails in reply to PMRpro

He’s obviously looking for ‘The Ideal World’ but that’s not going to happen anytime soon especially as Rheumatology Teams are pushed to see Patients anyway.

But what is the answer? You suffered with PMR for much longer than most of us untreated.....

PMRpro
PMRproAmbassador in reply to MrsNails

Well it certainly isn't paracetamol or NSAIDs!!! I did use ibuprofen a bit - but more to remove any other aches/pains so all I had to cope with was the PMR pain on the grounds every little helps! They never helped with the stiffness and never mind the 45 mins in the morning stuff - as Lorna said to me during the webinar, our stiffness was all day! I don't think he - like so many - really has any concept of the disability that PMR brings with it without pred. It is far far more than "just" the pain. Most effective for me was not using stairs at all and an hour of aquafit in a warm pool - then I could move reasonably freely even if it hurt. But I couldn't iron for more than 5 mins at a time, walk up stairs (I crawled or pulled myself up on the handrail) or get anything out of a cupboard above shoulder height. I could work once I got out of bed and into the computer chair - typing only requires movement from the elbows down!!!! I could barely move when I stood up though.

MrsNails
MrsNails in reply to PMRpro

I can only agree, l was almost paralysed, when l think back now, l should have been admitted to hospital, l was totally unable to move but treated as if it was all in my head! I popped Paras, Codeine & ‘Good Old’ Dicolfen...

Hot Water Bottles, Hot Wheat Wraps & was wrapped up like a Very Elegant ‘Pass The Parcel’ in swathes of Velvet!

If everyone was seen within two weeks it would be nothing short of a miracle...

PMRpro
PMRproAmbassador in reply to MrsNails

I don't think we always realised at the time just HOW disabled we were. It was being stopped driving that brought it home to me - without a car I was totally stuck. In pain and miserable - he just scuffed over depression at one point: of course we are b£**%y depressed, chronic pain does that, it isn't that it is a different thing from some other form of pain. I think it may be due to a compounded problem: there are indubitably younger patients and HE is encouraging others to follow his lead in refusing to accept that fact. If they won't consider it is PMR because 50+ is too young - then there won't be cases in the literature because we are all told it is fibro, menopause, depression. I was - the F-word didn't get a mention at least! And it is noticeable that in the UK the ones who look wider are often younger female rheumies and the sceptics who adhere to the black/white view and defined duration of PMR are male - and often of a particular ethnicity who seem to have an above average representation amongst rheumies in the UK. PMR is very very rare in Black African and Asian populations - it is a Caucasian disorder and they won't have seen first hand how PMR affects their mum, aunty, the older generation in their family, whereas RA and co are as common in Indian ethnicities as in the rest of the world. If patients present with similar symptoms - it is logical they will tend to what they know from experience.

MrsNails
MrsNails in reply to PMRpro

Yes, that’s an interesting point about it being a very Caucasian Disorder & l do believe Doctors do choose their Speciality from past experiences, l always used to ask My Doctor’s at the Hospital why they’d specialised in a certain discipline & the answers were often fascinating....

I only recently saw some photos of me at the Christmas l was so, so ill prediagnosis, l was so thin & gaunt.....

PMRpro
PMRproAmbassador in reply to MrsNails

My thoughts about why they choose rheumatology are not very kind ...

MrsNails
MrsNails in reply to PMRpro

I’ll PM you later 😉

After my flare I was told to taper by 1 mg a month to 10 and after that by 0.5 mg per month.

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