Who to believe ?: Good morning all from a very wet... - PMRGCAuk

PMRGCAuk

12,637 members22,953 posts

Who to believe ?

Jud666
Jud666

Good morning all from a very wet and soggy Yorkshire.

My specialist and my GP disagree completely, which leaves me very confused. I have PMR and i am tapering very slowly from 4mg to 3mg via some time on 3.5mg. My symptoms seem to be returning so rang GP to see if i could go back to 5mg, he said not without blood tests because patients often put all aches and pains down to PMR.

He read my specialists last letter that said if two reductions fail i should take long term 5mg. My GP disagrees with this completely and says he likes everyone off steroids within 18 months (which is where i am now ) It's a rock and a hard place, i notice on here lots of you have been on steroids for a lot longer. I have lots of faith in my specialist but equally my GP is a very straight talking Yorkshire man !

77 Replies
oldestnewest

Hi

Others will be along later

But PMR can last to 9 years and more in some cases

I would go back to 5 and stay thier and hopefully you will be able to reduce again .18 months is a short time so you are doing really well .

I was diagnosed in Mar 2016 with GCA, then after a couple of months developed severe pain in legs. GP says PMR because it goes with GCA, Rheumy says it is not but has not said what else it might be!

PMRpro
PMRproAmbassador

Your GP is - to put it relatively kindly and politely - a prat. I can straight-talk too...

According to a recent study which conforms what patients have been saying for years, PMR has a median duration of 5.9 years and less than 20% of patients are able to get off pred in under 2 years - so I truly pity his PMR patients and I hope they are all able to see a different GP who knows better. The median time to get to 5mg is 18 months - which obviously you have achieved.

practicalpainmanagement.com...

In which hospital does your specialist work?

Daisychain12
Daisychain12 in reply to PMRpro

Bravo PMR pro. I agree. Gp is not helpful with such intransigence. It is stubborn and ill advised imo. Poor Judd.

'Prat'. Is that a medical term PMRpro..? :-D

prat:- idiot,ass,halfwit,nincompoop,blockhead,buffoon,arse,rear end! Seems ok Mark!

PMRpro
PMRproAmbassador in reply to markbenjamin57

Probably in some language...

yup . Prat: Medical Dr. or PHD or general know-it-all who does not listen to others.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to markbenjamin57

Pompous Recalcitrant Arrogant Tosspot

Another medical term DL..? :-D

PMRpro
PMRproAmbassador in reply to markbenjamin57

Of course!!!!!

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to markbenjamin57

One of many!

Ha Mark, these ladies are obviously getting out of hand 😵 maybe our antics will soon become acceptable to the 'club' 😜🤔😵

Blimey Pete, that would be a turn up for the books :-D

Love it!

Only for some doctors and rheumies who deal with PMR!

Jud666
Jud666 in reply to PMRpro

Hi

Thank you so much for your reply. My specialist works at Airedale General, Keighley

Judd I feel you need better advice as I am in agreement with PMR. It’s not right what your gp says

Greetings Jud :-)

I'm sure you'll get lots of responses to this one, but if it helps:

In similar circumstances to yours, I had a similar (unhappy) experience with a temporary GP who emphatically said "I get ALL of my patients off the Preds within 2 years", and then implied that she would take a view on continuing to prescribe them for me. Mmmm...

So..

(armed with knowledge from here..) Letter of complaint to the Practice Manager quoting a research paper (British Society of Rheumatologists / Prof Dasgupta, I think) which mentions (sic) 'the Heterogeneity of PMR disease course, and therefore any steroid tapering schedule should be flexible in terms of the Patient's context and presentation of symptoms'. I also complained about said GP's manner, which was uncompromising.

Result?

Appointment offered with senior GP at the same Practice who was totally understanding, listened, agreed with the above, and said he was happy for ME to judge how fast or slow to taper. Good man...

That was about a year ago. Still on / back to 3 mgpd after a brief fling with Pred Club Zero but returning symptoms after quite a strenuous time. Now at 3, feeling marvellous symptoms-wise recently (i.e. virtually none!), so another try soon to nudge downwards - like you.

My (amateur) Conclusion? Your Rheumy has the right advice - and attitude. Your current GP is mis-informed and also dogmatic. Sadly, there are a few GPs out there who just don't 'get it' in terms of the unpredictability of PMR and Pred tapering. Stand your ground and put things in writing - for the record.

Best wishes and keep your chin up ;-)

'Uncle' MB

From a cloudy North Somerset..

Oh hats off Mark! That’s the way to do it.

It's the way I tell 'em...? ;-)

Thought of you when I was giving my car a good cleaning yesterday.a lovely day and not so hot. 😎

Ah ha bunnymon - car valeting! :-) My favourite pastime (after terrorising You Lot of course). Hope you did inside the door shuts and dressed the tyres..? ;-)

Inside the doors but alas the tires were skipped. Never even occurred to me. I am obviously not a professional.

At least you did inside the doors (most people don't bother)! To be fair, valeting a car thoroughly (especially an older one) can take a day of hard work if you have to do things like cleaning or renovating alloy wheels, interior trim & carpets, dressing rubber door & window seals, touching-in scratches and scuffs, waxing paintwork, cleaning glass inside and out etc etc - and with the right products and materials. In the motor trade, it's called 'Detailing'. I love doing it! :-)

Gosh, do you do housework?

Yep, I do Benjamin Mansions once a year - whether it needs it or not :-D

Thank you so much for taking time to write a a full and comprehensive reply, really appreciated.

Ha Mark, your obviously a Dutch Uncle 😁 I think however that if I took your line, and knowing the medics in my surgery, they would gang up and ban me for life, I would be regarded as a trouble maker. I am glad it worked for you 🤗 as you say, it's the way you tell em! 😵

Well Pete, in the 'Day Job' / my main work I'm a Communication Skills Trainer and Consultant - including Assertiveness and Negotiation Skills among other things. Ohh.. and Writing Skills of course! It helps in situations like the one Jud describes..

But if all the Soft Skills fail, a good punch-up usually sorts things out ;-) :-D

Lovely, I always thought you were some sort of guru 😉 only kidding, the internet is quite a giveaway 🤗

Do you mean my professional website? ALL FAKE NEWS SPREAD BY BAD PEOPLE!!!!! Or is it...? ;-) :-D

Yes your professional website, must be fake news, I thought it was written by Trump 😁

I know neither of those Men or not.... :-D

I must admit that I wondered how you would answer that 😊 well Mark you can fight in my corner anytime 🤗

All part of the service for any of Us Lot here Pete :-)

😁

Oh dear! I am more with your Rheumatologist here. Don’t they outrank GPs in this instance?

Your blood tests will be clear - that’s what the Pred is doing.

Side effects on these small doses are negligible and yet they can make all the difference to the quality of your day to day life.

Bless your GP for being a straight talking Yorkshire man ( terrifying) but I would go back to 5 rest there for months maybe, then creep down when the time is right.

Let us know what happens, you are going to have to be assertive. ( says she who is frightened of her straight talking Yorkshire gas fitter).

Hear, hear, Jane :-)

PMRpro
PMRproAmbassador in reply to SheffieldJane

Now a straight talking gas fitter is of far more value than a GP - you can't afford to lose him!!!!!

He’s the only one who can service my Rayburn in the whole of Sheffield. He made me cry once, blunt is not the word.

PMRpro
PMRproAmbassador in reply to SheffieldJane

Lord - what did he say???????????????????????

Ladybird25
Ladybird25 in reply to PMRpro

I was going to ask the same question! What a bullying gas fitter.

PMRpro
PMRproAmbassador in reply to Ladybird25

But as long as he also bullies the Rayburn!!!

SheffieldJane
SheffieldJane in reply to PMRpro

It was when he’d gone, he just made me feel like an incompetent fool. He asks questions that he knows I can’t answer and then there’s a kind of irritated, eye rolling. Trouble is, the Rayburn loves him.

Horses for courses Jane. Blimey! He sounds like a medic to me! I can't always say I love them though!

PMRpro
PMRproAmbassador in reply to SheffieldJane

Which really is what matters ;-)

blunt:-straight forward,frank,plain spoken.candid,direct,not sharp! Any good Jane!

Try rude, misogynist also. It doesn’t help that gas kind of scares me. My mother’s stories of standing on the table trying to light a delicate gas lintel, when she came home from school at the age of 12 on a dark winter’s afternoon don’t help.

1960's Caravans! Very delicate they were those lintels!

PMRpro
PMRproAmbassador in reply to Pepperdoggie

You can say that again - breathe on them too hard and there they were gone!

Pepperdoggie
Pepperdoggie in reply to PMRpro

Some strange beauty about that primitive myself & the stinky caravans!

DorsetLady
DorsetLadyPMRGCAuk volunteer

‘Scuse me, but who’s the expert in PMR! A Rheumy or a GP?

I know we don’t always agree with all Rheumies, but your GP is stepping outside his comfort zone here methinks!

I know which way I’d be following.

Insert straight-talking for arrogant!

PMRpro
PMRproAmbassador in reply to DorsetLady

That's debatable sometimes! But absolutely essential is: which doctor shares his care with you? In this case - it sounds like a rheumy who realises patients are individuals. Not the GP who is wearing blinkers and being a bit of a donkey...

Pepperdoggie
Pepperdoggie in reply to PMRpro

Does the referral process work in reality for the NHS. Do they fire missives at one another if they disagree? Can't imagine that! Is it our choice between them? Well GP usually deals with all other stuff! Jud666's one is following old script & rheumy is listening better. Choices eh! Better always when you look em in eye!

I feel really sorry for all your GP’s other patients with PMR if he wanted them off steroids in 18 months. I wonder if he is actually talking about patients on steroids in general which may be a bit more understandable - possibly. It amazes me the doctors who say PMR will last x years, as if the PMR has a calendar it is ticking off and when it gets to the x point it says Ahh time to go into remission!

caterpillar
caterpillar in reply to piglette

yes! and PMR is also consulting the calendar when choosing it's victims... apparently anybody under 60 (recently revised to 50) is not chosen!

It's remarkable that the GP is not prepared to listen to the specialist. Too often we find the GP is more understanding of the patient's plight than the more remote rheumatologist, but not in this case. I would go a little further and say that even the specialist is expecting a bit too much. One taper failure should be enough to stall the taper process at least for a short time. I made two attempts last year to taper to a dose which was evidently too low, and after dealing with the resulting flare it took a whole year to get back to where I'd been. I, too, was at a very low dose, presumably doing me little if any harm, but still a lot of good PMR-wise. Your dose of 3 or 4 mg and steady if extremely slow progress on the taper front should make both your doctors happy.

Thank you all so much, it's really good to have this site, i feel a lot stronger now to follow the specialists advice. I just wish i had the nerve to show my doc all your great comments, thanks again, Jud

PMRpro
PMRproAmbassador in reply to Jud666

Do you not have a choice of GP at the practice?

Jud666
Jud666 in reply to PMRpro

Hi, Yes i do. I'm part of a very large practice, 19 consulting rooms ! It's very difficult to have continuity of care. An appointment is always available that day but with so many GPs it's a lottery. To request an appointment with someone specific is almost impossible, and if available it would be weeks in advance.

PMRpro
PMRproAmbassador in reply to Jud666

That is appalling. I see the point of large practices - but then you should be able to see the doctor of your choice if possible. My daughter has a similar problem and simply refuses to see the really rubbish ones. They have messed her up badly both with asthma (THEY had to dial 999 for her to be blue-lighted to hospital by her paramedic colleagues and even the unqualified driver knew what to do better than the GPs did!) and renal problems - it took a year to get the operation she needed and which should have been done within a couple of months to guarantee long term success. The NHS is in a mess - but her GPs contributed to the problem...

Jud, only a suggestion but...

If you put things in writing to the GP Practice Manager AND send a copy to your nice Rheumy you will a): avoid any difficult and stressful face-to-face interactions with your intransigent GP and b): quite possibly encourage them to talk to each other / work together in your best interests (as they should!). Or.. the Practice might help you to get an appointment with a more sympathetic / flexible GP in future. Or... the Rheumy might just 'pull rank' on the GP as PMRpro suggests should be the case anyway.

And if that doesn't work, you at least have your issues (with the GP) on record and some recourse via whatever body governs that particular GP Practice's Patient Care policy. I'm sure others here can advise on how to escalate things formally if necessary...

Main thing is: 'Don't get angry - get a (Your desired!) Result' ;-)

Fingers crossed.. keep us posted.

MB

Hi Once again thank you for that. You are absolutely right, in my working life i have always been in charge, and like my doc i too am a Yorkshire lass and we don't suffer fools !! BUT i sort of chose this doc because when he was a young keen GP he looked after my mum through a long and difficult illness up to her passing away in 1999. So when i returned to the area he seemed an obvious choice, but i suppose many years of NHS stresses can harden any GP.

No problem Jud, all part of the service :-)

Interesting that you know your GP from the past when he was clearly very helpful to your late mum. But as you say, he, too, might be under all sorts of pressures nowadays. As far as I know, GPs don't get any training in Psychology / Relationship / Communication Skills during their 7 years to qualify. For better or worse, they're trained in Medical Science and Pharmacology - not Humananistic Psychology!

And.. Medics (like the rest of Us Lot!) have differing Communication Styles to boot. I'm convinced that many of the 'conflicts' like the one you describe (and I have experienced too) are as much about differing Personality and Behavioural Styles as they are about who's Right or Wrong.

Food for thought.. ?

Hi Jud,

I agree with Mark that something needs to be put in writing to your Medical Practice.

The following paragraph from the article that PMRpro has mentioned would be a good starting point:

".....In the new study, the median time to taper below 5 mg a day for 6 months was 1.44 years (95% CI, 1.36-1.62) and the median time to permanent discontinuation was 5.95 years (95% CI: 3.37-8.88). At 2 years, the mean cumulative dose was 4 g and at 5 years, 6.3 g. The mean daily dose at 2 years was 6.1 mg and 7.2 mg at 5 years. The average initial dose was 16.9 mg daily......"

However, I would print out the whole article and attach it to your letter.

The others have said it all about how we feel about your GP and Rheumy. We know which one we'd choose! I would ask the Practice Manager which of the GPs has a special interest in Rheumatology. However, the bottom line is that you know your body better than any doctor does.

Let us know how you get on.

It would be a good idea for your GP to look at this forum, it would certainly tell him a lot more than he seems to know about PMR, l hope that you find a more understanding doctor ,the previous posts have said it all,l wish you all the best.

Again, thanks so much everyone, i'll post any progress.

Hi Judd,

With so many replies (some of them a bit off track!!) I wondered whether to add my Pennyworth but here I am....

As an ex Yorkshire lass myself but now living in beautiful Tasmania, I have had PMR for 14 months and am currently on 9 mg using the DSNS tapering method. I feel so blessed that my lovely GP lets me decide when and how much to taper and has never suggested I see a Rheumatologist. She diagnosed PMR straightaway and has a friend who has had it so I guess that helps?

Remember that not that much is known about the condition , it was only identified and named in 1969. Everyone is different and everyone will follow their own path to recovery. I would steer clear of any of the health professionals who have intransigent attitudes, this is not a black and white condition it has so many shades of grey.

Incidentally, my brother in Wales also has PMR. Anyone else got it "in the family" as it were? I know it has a strong genetic link.

Above all be kind to yourself and cut yourself lots of slack - no "shoulds".

As a fellow Yorkshire woman, I am fortunate in having an excellent relationship with my GP. However, he did comment at the beginning of this PMR lark, that I should be careful about following any recommendations on the Internet (!!!???) It's following said recommendations on this website which has led me from 20mg in May 2017 to 3.5mg now. And we don't talk about the internet - bit like don't mention the War! So grit your teeth and get your letter off to the Practice Manager - you don't have to face your "straight talking" (aka arrogant) doctor and he may very well get a grip and realise that he can't bully people into doing what he thinks is best. Phew - think I might have to go for a lie down. Good Luck!!!

Jud666
Jud666 in reply to borednow

Thanks Borednow

I've had the same experience. I'm on 5mg and have tried every sort of tampering, unfortunately within months I'm in pain, all the symptoms etc which renders me useless for about 2 or 3 days. Having read various posts and loads of good advice from experience people on this blog, the general feeling was, listen to your body and if you dont feel right then do what you feel is best for you. I took this advice and dug my heels in with my GP and said under no circumstances am I reducing from 5 mg, which went down like a lead balloon, but I dont care it's my body and I know how I feel. So, the doctor prescribed calcium together with Alendronic acid ( which I already take). The problem is of course, is that the glands (not sure if that is perfectly correct) get lazy and therefore doesnt produce the necessary amount of steroids. In order to check this my consultant suggested I leave out the pred until I have an attack, then get blood tests whilst in this state. My response was the same as I gave to the doctor. The consultant has written to my doctor, suggesting that this action should be taken under the doctors supervision in order to monitor inflammatory markers. Really, whats the chances of getting a blood test when I have a flair up and get an appointment, the answer to that is two week!!! So that's not happening either....

I know I havent given you any answers but I thought you should know, you are not alone in this, I wish you all the best.

Jud666
Jud666 in reply to Bobbury

Thank you Bobbury

I have been off pred for one week and creep around wondering if I feel ok or not. Am off down south on Thursday for a weeks holiday seeing my mates I left behind when I moved up North. I have packed my spare preds (5mg ones) just in case. My legs still feel like lead but perhaps that is forever the week away will be the answer me thinks , they improve as day goes on but I still walk like a snail 🐌. When I come back think I will ask nicely for a bit of an overhaul as since moving up here have not even had blood test, I ask doc for steroids and just get the prescription which isn’t too reassuring is it. Many of you sent me kind messages re my son who having had his colon removed was diagnosed with cancer. He is still awaiting chemo as his operation scar proved infected so that has to be cleared first what a worry it is. Will let you know how my holiday goes without steroids !!

If your specialist has written the treatment plan in a letter then your GP has to conform to it, without unnecessary blood tests.

You, as the patient , also has the right to demand politely to be put on the increased dose that your specialist has recommended , because you also have a legal right to have a say in your own treatment.

Tell your doctor that you want to go back on 5mg with the plan to try to reduce it as soon as possible and you do not need to have blood tests to do this.

Explain to him that you want to take your specialists advice , and although you do not want to cause barriers in your relationship with him , you will have to contact the specialist and inform him that your GP will not allow you to increase your dose and ask him to request by letter for the GP to do this again. It is highly unlikely that you will leave your surgery without the appropriate dose.

I understand that you like your GP, he may be straight talking, a good egg, we all have them . Unfortunately, their priorities and beliefs in treatment protocol may work for them, or their practices, but it can be at the expense of the smooth ongoing management of symptoms of you , the patient.

If they know you will fight your corner, politely and considerately , with all the facts you need , early on in your treatment , it will mean working with them in the future will be alot easier, it will cause you less stress and your treatment changes will happen when required by you, not when they think you have struggled on enough.

My friend is going through this with changes in medication , and the GPs , constantly saying they cannot have them without bloods every month, the specialist says this is unnecessary on the roses they are on, my friend tells them the score, or the specialist rings to sort it out, and my friend gets the meds.

It is just such a shame that doctors of all levels feel it is fine to put us under added stress and work to get medical health because of their priorities or beliefs , not our diagnoses, especially as it is them who then ironically tell us to try and be less stressed because of its affects on illness.

Good luck and keep strong.

Surely the central point here is that we poor untutored patients should never have to face the problem of two Medics who disagree with one another over an important matter like this - and to decide which is one of them is right. It's NOT our job to decide between them. Whichever one was second to give an opinion should have contacted the first, as soon he / she realised that there was a disagreement between them. Then they should have put their heads together (or picked up a phone), and come up with a carefully considered united front to put to you - the poor confused patient. If they still can't agree with one another - THEY should seek a further opinion.

I think you have to explain this simple logic to them. It's just such a pity they can't see it for themselves.

This has happened to me. It is disgraceful. Grrr!

i am steroids for 15 years and can not get down past3 mg

You may also like...