A quick update: Telephone consultation with Prof... - PMRGCAuk

PMRGCAuk

12,305 members22,340 posts

A quick update

Kendrew
Kendrew

Telephone consultation with Prof Dasgupta today. He was very unhappy with the higher dose of steroid I've had to increase to and wants me to get down using what he called a 'clinically recommended' taper....12.5, 10, 7.5. So, dropping 2.5mg every 4-6wks again. He also was certain after a lot of questioning that the aches and pains I was experiencing at 2.5mg were adrenal related and now, are pred related. Talked about amitriptyline again but I refused. I don't need it....I'm sleeping fine. So.... I'm now somewhat bemused by it all.

69 Replies
oldestnewest
DorsetLady
DorsetLadyPMRGCAuk volunteer

We all know that’s the clinically recommended taper - but we also know from experience it doesn’t always work.

He may have been correct that issues at 2.5mg were Pred related, but you won’t know until you get there again....but can’t see how they are Pred related at a higher dose.

Pred masks most pains not enhances them. No wonder you’re bemused.

Any advice if taper goes to rats? Technical term 😳

Kendrew
Kendrew in reply to DorsetLady

I think because I had some issues when on those higher doses previously that were linked to withdrawal and occurred after each taper, he's made some kind of 'connection' there maybe. Not quite sure what though. I should have asked, but telephone conversations are so unhelpful and unproductive.

I think as the last previous dose that worked for me was 7.5....adrenals might have been issue when I began to taper down from there. (didn't know that initially at the time though) When I mentioned about recommendation to go up to 5mg above previous successful dose....he came across as being quite scathing and said advice on this forum came with no medical endorsements. Whether it does or doesn't.....it's still based on legitimate experiences of what works and what doesn't for people! I was a little surprised at how annoyed he seemed at me. He even said he was going to let me just get on with it and he would be recording it in my notes.....like I was being punished! That had changed by end of conversation though as I felt I had to apologise to him for not doing as he'd instructed and he then seemed back on board. I know he was concerned about the dangers of higher doses of steroids and emphasised this repeatedly, but it has all left me in a quandary as I said. Wants to speak to me in 6months!!

Watch this space!

PMRpro
PMRproAmbassador in reply to Kendrew

The "add 5mg to the dose where the flare occurred" may be advice he perceives as being from the forum. But we are just the messengers - it is a recommendation from experts in the field throughout the world. Though it does seem quite clear to me that if any advice or findings comes from outside the UK, it isn't seen as valid.

I am not in the least surprised at the reception you got.

Kendrew
Kendrew in reply to PMRpro

I was expecting some repercussions from taking control of things myself, but wasn't expecting to be made to feel like an errant child! It hasn't changed my opinion one bit regarding the importance and value of this forum though!

Manchild
Manchild in reply to PMRpro

Funny, because when I quite UK doctors to my Rheumy here in the USA, he just laughs and says they do things very differently “over there”!

DadCue
DadCue in reply to Manchild

I always remind people that doing things "differently" doesn't imply one way is right and the other way is wrong. It is only when people think they are infallible that problems arise. The propensity to "disagree" with alternative ways of treatment just inhibits the ability to learn something new.

PMRpro
PMRproAmbassador in reply to Manchild

In the context of PMR and GCA there aren't actually that many different options and the guidelines are drawn up by the ACR (USA) and EULAR (Europe)! There are some doctors in the USA who quote something very similar to the Dead Slow approach to tapering and others who have been approached by patients are agreed it is a good idea.

Do it as differently as you like - but the role of the doctor in PMR in particular is to manage their patients' pain and symptoms to allow a good Quality Of Life since there is no cure. Even tocilizumab isn't a cure although it is thought that it does induce the underlying cause to burn out in some way. If a doctor isn't doing that, they are failing the patient.

DadCue
DadCue in reply to Kendrew

"When I mentioned about recommendation to go up to 5mg above previous successful dose....he came across as being quite scathing and said advice on this forum came with no medical endorsements."

Wow ... imagine that! Just to make sure the "he" is Prof Dasgupta???

I remember discussions like this with my rheumatologist. She would somewhat lecture me about increasing the dose of prednisone without a sound basis for doing so. She didn't always think my judgement was the best. In retrospect, she was probably right.

On the other hand, it was my pain and she wasn't always available to make day by day decisions for me. Taking more prednisone was a very easy thing to do but not always the medically correct thing to do.

Kendrew
Kendrew in reply to DadCue

Yes....it was prof Dasgupta. As you said.....he wasn't easy to access for advice and I couldn't even get my gp surgery to answer the telephone at the time.....let alone book a telephone consultation with a GP! So, I had to take control and do something! It will have been right in some people eyes and wrong in others and although I try and weigh up all the information and advice I receive from all the different sources, ultimately, it's my body and my decision to opt for the choices that seem best. I know I won't probably get it right all of the time though. Thankyou for your input.

Thelmarina
Thelmarina in reply to Kendrew

‘Ultimately it’s my body and my decision to opt for the choices that seem best’. And that neatly sums it up. That’s the bottom line. 🌺

Ha I had the same conversation with him” so you’re back to where you started then !”😰 I imagine he suggested such a fast taper as you’d only been at the higher dose a short time? He usually recommends a slower taper . I worked out my own taper with the help of this amazing forum, doing the DSNS when I got to 8mg and now reducing by 1/2mg at a time from 6 onwards. Good luck.

Kendrew
Kendrew in reply to Maisiek

Thankyou Maisiek. Yes....I intend to follow his taper regime to 7.5 as this did actually work first time around and then I too will follow the DSNS taper regime. Quite reassuring to hear you experienced similar with him. Sometimes I feel like I'm just a 'guinea pig'!

MrsNails
MrsNails in reply to Kendrew

You can still do a DSNS Taper but it maybe be a bit more jumpy but dropping from 12.5mg->10mg can make you feel like 🤯 anyway.

Kendrew
Kendrew in reply to MrsNails

Ok. Thankyou for that info.

MrsNails
MrsNails in reply to Kendrew

I do my taper over 3weeks & then the last week is ‘The New Dose’ so when they ask/tell me to reduce by Xmg per month, it’s the same difference......

I’m a 0.5mg a month reduction gal now, l’m back on full dose MTX (25mg) so starting the slow reduction from 13.5mg just hitting 13mg this weekend......

Good Luck 🍀

Kendrew
Kendrew in reply to MrsNails

Thankyou. Good luck to you too.

MrsNails
MrsNails in reply to Kendrew

The other thing you could do is drop 0.5mg every week ie 2.5mg in 5weeks...

Maybe less stress on your body & achieve the same result?

Kendrew
Kendrew in reply to MrsNails

Thankyou. I like that idea. Appreciate yours and everyone elses input. Really helps.

MrsNails
MrsNails in reply to Kendrew

It would be so much less stress on your body & do read up about Amitriptyline as some Doctors recommend it when decreasing the Pred to help, l’m not convinced that it does but it certainly works for painful shoulder muscles & helps you to get a more relaxed sleep 😴

Kendrew
Kendrew in reply to MrsNails

He did seem very keen to put me on it but to be honest I do actually sleep ok and my levels of muscle and joint aches doesn't really impact on what I can and can't do pain wise. It's more physical fatigue if that makes sense? I certainly won't rule amitriptyline out but don't feel I need to add to my cocktail of drugs further just yet. I will definitely do some reading up on it though. Thankyou.

PMRpro
PMRproAmbassador in reply to Kendrew

There are some doctors who are so sure they know better what pred does to the patient than the patient themself! Pred at 15mg doesn't stop me sleeping - my bad nights have other causes and they are irregular.

My fatigue is a quite specific thing - lack of motivation in some ways, an inertia that simply doesn't let me summon up the energy to do something and feeling as if I've already done loads when I haven't. But even that doesn't express it properly.

Kendrew
Kendrew in reply to PMRpro

That's a good attempt though!....and very much the kind of description of some of my experience of fatigue although there is a definite physical/motor aspect to it too.

PMRpro
PMRproAmbassador in reply to Kendrew

In what way? This is intriguing - we may be able to get through to them! Have you seen the 15 sorts of fatigue post? I haven't compared it with the original to see what she has added!

info.sjogrens.org/conquerin...

Kendrew
Kendrew in reply to PMRpro

I had read this before, but I don't recall the two additional ones at the end..... 'Fatigue that comes from being with family and friends who don't have the disease', and 'Doctor Fatigue'. I feel my fatigue is predominantly akin to the first 3.....Basic, Rebound and Sudden....all involving limitations on physical assertions. But my fatigue definitely has elements of some of the others too.

PMRpro
PMRproAmbassador in reply to Kendrew

No - they do seem new from what I remember. Not sure I'd call them fatigue - more frustration!

Thelmarina
Thelmarina in reply to PMRpro

I think it’s a combination of the slightly numbing ongoing fatigue, even when we have a ‘can do’ day, and the fact that our heads are always in advance of our bodies and we feel younger than we are! 😅

PMRpro
PMRproAmbassador in reply to Thelmarina

A friend said last night "why don't our minds feel older?" ...

Thelmarina
Thelmarina in reply to PMRpro

Oh yes! Perfect!

DadCue
DadCue in reply to Kendrew

I personally take Zanaflex (tizanidine) which is a short-acting muscle relaxer. It works by blocking nerve impulses (pain sensations) that are sent to your brain. I take it randomly up to 3x per day but I usually only take it a bedtime. I take it as needed which works better for me. It wears off quickly.

Amitriptyline works differently and is longer acting. I rarely do well with long acting medications because I don't seem to metabolize them very well. There becomes a cumulative effect that I dislike which is why I stopped taking amitriptyline.

"My fatigue is a quite specific thing - lack of motivation in some ways, an inertia that simply doesn't let me summon up the energy to do something and feeling as if I've already done loads when I haven't. But even that doesn't express it properly."

I can relate to that ... some of it came from the shear exhaustion which happened whenever I did get up a do something. It became a negative reinforcement for almost any activity. It was profoundly different from how I use to be. I prided myself on my endurance and stamina.

PMRpro
PMRproAmbassador

Have to ask - what is clinically recommended about dropping 2.5mg below 10mg? ALL the reduction schedules I am familiar with say 1mg at a time below 10mg and it is also said that tapering at more than 1mg/month is predictive of flares.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Good point.....and his name is on the recommendation is it not!

Kendrew
Kendrew in reply to DorsetLady

I so wish I'd known that before I spoke to him!! How strange that he's not advocating something he's recommended!

PMRpro
PMRproAmbassador in reply to Kendrew

Doesn't surprise me ,,,

powerwalk
powerwalk in reply to Kendrew

This is why they have us so confused!!!!! Even my own rheumy did a U turn on a previous conversation to the point I just sat there trying to get my head to take in what he was saying while panicking at the same time cos I didn't want to go down the road he was now going!!!! Hope your taper goes ok for you, best of luck .

Kendrew
Kendrew in reply to powerwalk

Many thanks

Just to stick my oar in :) I have taken Amitriptyline for many years. The sub-theraputic dose, as they call it, is used for lots of reasons. IBS, migraine and nerve pain being the main reasons. I remember thinking when I was first given this "anti-depressant" that I was being robbed off. However after several years of taking a low dose, 10mg, I can safely say that this drug is beneficial. I take my dose at 7pm as I have found that helps me with pain relief and doesn't give me a "hangover" the following day. Because I have degenerative disc disease with some nerve involvement I now take 50mg at night which has helped me to get comfortable at night. I do have a weird sleep pattern where I may not sleep until 3am but I do sleep well when I do drop off. I am four years into PMR and on 5mg of prednisolone. I am in Essex but not one of the Professor's patients. I am lucky to have found a Rheumatologist in Broomfield hospital who looks after me very well :)

MrsNails
MrsNails in reply to S4ndy

Yes Sandy, me too, it really helps with shoulder pain especially if the shoulders are tight & knotted! And, it’s way beneath the dose for antidepressant use, god knows how the patients ever used to wake up when they were on the full dose!....

PMRpro
PMRproAmbassador in reply to MrsNails

Probably didn't so they didn't know they were depressed ;)

MrsNails
MrsNails in reply to PMRpro

Exactly!

Kendrew
Kendrew in reply to S4ndy

Who do you see please cos I'm not far from chelmsford!

S4ndy
S4ndy in reply to Kendrew

Dr Peddasomyajula (Dr Mani to his patients). He is based at Broomfield Hospital. I see him on the NHS but he also does private work at Springfield Hospital. I am quite happy with him :)

Kendrew
Kendrew in reply to S4ndy

Thankyou for that. I really appreciate it.

This could be an odd question, has anyone suggested a Synacthen test, now you are way below 5mg? Just to see if your adrenal glands have woken up and a starting to work?

When I had my first consultation with my Rheumatologist back in January 2018 we had a very thorough discussion which included my refusal to take Alendronic Acid. It all culminated in him saying to me "I am the consultant and you are the patient. if you don't do as I say you can find another Rheumatologist" I just looked straight in the eye and said "Mr Xxxx, that's not a very nice thing to say. I thought we were having a meaningful clinical discussion about my treatment. Seems I was mistaken". He wrote on my notes; patient is a Pharmacist and refuses AA. He was seeing me every 4 months because of ?GCA with PMR. I haven't been recalled for over a year. I don't let it bother me now because I was getting myself in such a state prior to seeing him it affected my health.

PMRpro
PMRproAmbassador in reply to PMRnewbie2017

I would have found another rheumatologist - one who didn't feel threatened by a sensible discussion with a fellow healthcare professional who was aware of the other side of the bisphosphonate story.

That's so interesting to hear yet another similar attitude to the one I experienced. When I told my rheumatologist I wasn't prepared to start taking amitriptyline again because I wasn't manifesting the issues he said they'd alleviate, he didn't put on my notes, that we'd discussed it and agreed they weren't necessary at the present time.......he simply wrote.... 'Patient refused Amitriptyline'. Makes me come across as arrogant and I truly don't think I am. At least I hope I don't come across as that! I feel his reaction was rather similar to that of a petulant child!

'the aches and pains I was experiencing at 2.5mg were adrenal related' . Adrenal problems are more like overwhelming fatigue, dizziness, nausea. Aches and pains are more likely due to PMR and inflammation, IMHO. If he thinks they are adrenal related he should be sending you for a synacthen test.

Kendrew
Kendrew in reply to tangocharlie

Well, that's what I thought, but I guess I was just bowing to his greater knowledge!! It's so challenging trying to navigate a path through all the misinformation and ambiguities that pour out of the mouths of 'experts' who you should be able to trust.

tangocharlie
tangocharlie in reply to Kendrew

It is indeed, I have suffered a major setback through a rheumatologist forcing me to reduce my dose according to a schedule even though I protested, and I'm now in a right mess as inflammation has built up again. SOME rheumatologists and their fixed ideas are often the cause of, rather than the solution to our problems. But that is the way the system works, they cannot suggest something unless it has been 'proven'. And nothing is 'proven' because it hasn't been researched. It's so frustrating.

Kendrew
Kendrew in reply to tangocharlie

I'm sorry to hear of your current situation and hope you manage to get things under control again soon. It is actually reassuring though to hear that even someone like yourself....with your extensive knowledge and experience.....can also struggle to persuade medical professionals that there might be a better way forward for you, than the one theyre suggesting! It shouldn't have to be this hard should it?

tangocharlie
tangocharlie in reply to Kendrew

That's kind of you to say, thank you. I'm very lucky in several respects. My rheumatologist is Sarah Mackie now (I switched back to her after the last debacle with her colleague) who is absolutely amazing and one of a rare breed of doctor who likes to listen and learn and wants to help. Also as you say, my knowledge and experience helps me ask the right questions and not be fobbed off. I try asking questions rather tha stating what I know. Often the answer is 'we don't know' and I'd much rather have that tbh than a wrong answer.

DadCue
DadCue in reply to tangocharlie

I was blessed with doctors who never claimed to know everything but I always acknowledged that they knew more than me. They were the people licensed to write prescriptions so I couldn't expect them to sign off on everything I wanted.

Prednisone was always an interesting medication but it wasn't like my doctors tried to restrict my dose. My ophthalmologist was the first to ask me how much prednisone I needed and said I would do a better job tapering it than he would.

I once requested and received a huge dose of prednisone from my GP because of difficulty with trigeminal neuralgia. He even asked if I was sure it would be enough.

My rheumatologist went to great lengths to explain why long term prednisone was not a good outcome. She listened to what I had to say every time I increased my dose but she had an understanding way of disagreeing.

Eventually my rheumatologist convinced me. Then I went on a rant about how I couldn't taper off prednisone. I think she was amused when I practically accused her of diagnosing PMR only because I wanted prednisone.

PMRpro
PMRproAmbassador in reply to Kendrew

Except he has never had PMR, never taken pred and never had to taper off it.

tangocharlie
tangocharlie in reply to PMRpro

You know the fixed taper plan mentioned in the EULAR guidance etc, where did the evidence come from that it actually worked? How did it become divine knowledge amongst rheumatologists? Seems far too much like convenience than reality that the severity of a disease like PMR dies down by a fixed amount per month. In fact, the guidelines stress they are only guidelines and you need to be flexible. Yet here is one of the writers of those guidelines disagreeing with his own work as others have pointed out.

PMRpro
PMRproAmbassador in reply to tangocharlie

Exactly. A fixed taper is OK for some people for some time - but I suspect that when patients go back and say they can't manage it, the blame is put on them. And the old chestnut of "all in your pretty little head" raises its head - remember most patients are women and until relatively recently probably of a lower educational level than their mainly male consultants.

tangocharlie
tangocharlie in reply to PMRpro

Thank goodness for the grass-roots revolution of patients arming themselves with knowledge and helping each other out, things are changing, even if slowly.

We have to also remember that Prof Dasgupta is 'one of the good guys' and very supportive of the Charity, he teaches us a lot too

Kendrew
Kendrew in reply to tangocharlie

I know you're right. He just baffles me sometimes. 🙂

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Kendrew

Agree!

Even the experts don't always get everything right, and that is partly because still so little is known about PMR and GCA and even what lies between the two. There's no excuse for some doctors assuming they do know it all though, when a better answer is 'we don't know'. Educating doctors on how best to treat these baffling illnesses and instigating areas of relevant research has to be a priority for PMRGCAuk, not to kow-tow to prevailing 'wisdom'.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to tangocharlie

I agree. But some doctors aren’t prepared to say “I don’t know” - whether they see it as a sign of weakness I’m not sure...but nobody can know absolutely everything about anything. So why not say - “I’m sorry I don’t know...not enough research”...”I’ll see if I can find out” .. or whatever applies...

piglette
piglette in reply to DorsetLady

If you are a god, you always know!! 🧠🧠🧠

Kendrew
Kendrew in reply to piglette

😄😄Haha!.......but are we not Goddesses??😄

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Kendrew

Certainly we are.....and Viking ones at that....so take no prisoners! Just in case you haven’t seen - might amuse, healthunlocked.com/pmrgcauk...

Kendrew
Kendrew in reply to DorsetLady

Loved it. Well....I've been a natural blue eyed blonde all my life and remained a platinum blonde till menopause when it became more honey blonde. I give it a little help now to hide the greys!! So maybe I have some genetic link, who knows!! I've just done an online quiz/survey to tell me which Viking goddess I'm associated with....and its come up with Freya too! Apparently, we ride a chariot pulled by 2 cats...Purrfect!😂

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Kendrew

Don’t often pull rank - but sorry - already taken! 😉. See profile

You need to earn your stripes- might let you be a deputy!

Kendrew
Kendrew in reply to DorsetLady

HAHAHA. 😂 Fair enough! I will relinquish all entitlement and say "All hail mighty Freya". Perhaps I'll just stick to 'Heather'!😂😂

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Kendrew

You are learning quick!..and I prefer Freyja 😉 .. just so you know.

Ooops! Sorry. Had not noticed the spelling. I quite like the profile for Hlín....Goddess of protection and refuge from harm. If I could choose, it would be her. I'm quite a nurturing person who likes to 'look after' and care for people. Probably why I became a nurse in the early days! Viking goddess or not.....we're strong people, and stronger collectively. Thankyou again to you and the others for your reliable information and for always being available. All hail Freyja!🙂🙂

You may also like...