Greetings All, Aunties especially. Hoping your day is going better than mine did recently.
First, as You Lot know, I'm not usually one to let-off steam here - I always prefer to make people giggle. And, as an honorary Uncle, I guess I should know the answer to this one. But isn't it strange how you can sometimes question your own judgement in these things?!
Ok, here's the Scenario:
I present to my new GP (age and gender not specified) at my local surgery after 2 weeks of Man Flu and feeling pretty wiped-out still.
My question / request(s):
'Might it be a Chest infection? I had a nasty bout of Bacterial Pneumonia 2-ish years ago and am a bit concerned about a recurrence. And, can I please arrange a routine FBC (Full Blood Count) test as my previous GP (since retired) advised. Also, I have struggled to get down to a low dose of preds (now 4mgpd), and I understand that a Synacthen (ACTH) test is advisable at these levels after a long period on steroids, to check Adrenal function. Can I arrange one please?'.
GP (typing furiously on her - er, their - PC before 'sounding' my chest):
'You might have a chest infection, I'll refer you for a Chest x-ray. Take this course of antibiotics for a week in the meantime. You don't need a FBC test / regular blood tests since your ESR is '2'. Are you off the steroids now?
Me: No, I'm at 4mgpd on a slow taper after a brief respite from symptoms a couple of months ago. It's taken several months to get down from 6mgpd - the Fatigue is often a problem.
GP (curtly): Once you've finished the antibiotics, I want you to reduce the pred immediately to 3 mgpd and then by 1mg every 4 weeks after that.
Me (calmly): 'But the reduction you're suggesting means proportionally greater drops each time compared with the previous dose, at short intervals, and at what I understand is a critical stage in the tapering process'.
GP (emphatically): 'I get ALL of my patients off of steroids within 2 years. If you are still Symptomatic later, we'll test your ESR again. Are you taking your Alendronic Acid?'
'Me:(re. AA) 'No, in view of my gender, age, previous fitness, lack of any personal or family history of bone fractures / Osteoporosis, and what I have learned about the side effects and efficacy of AA, I decided not to - sorry'.
GP (now exasperated, and in patronising tone as if talking to a decrepit, elderly relative): 'So, when you're 70 (i.e. in 10 years' time), if you fall over and break your hip as opposed to fracturing it at 80, how will you feel?!'
Me (politely): 'That's a bit hypothetical isn't it? I don't have a history of falling over - I'm pretty good on my feet after 25 years of playing Squash and being generally very fit'.
GP: (now visibly irritated): 'Ok, I'll consider referring you for a Dexa scan when I've done a Frax (?) assessment. Look after yourself... goodbye'....
(end of GP consultation)
Even with my knowledge of these things (thanks to You Lot), I leave the surgery feeling like a naughty schoolboy after a good ticking-off by the stern, new Headmistress... seriously! ;-/
The Outcome (if you can call it that):
X-ray result 'Normal - no action' (phew..). Dexa scan referral approved (ok, a result I didn't expect but the GP's probably only covering her back?). After some reflection (and with indignation building - I am a 'slow burner' that way), I hand-deliver a letter to the surgery f.a.o. the Practice Manager stating my concerns about the GP's declined requests re. FBC / Synacthen tests, and querying the wisdom of her Pred tapering 'command', including quoting BSR BHPR / Prof. Dasgupta's guidelines (paraphrased) 'no consistent evidence for an ideal steroid regimen for all patients / approach must be flexible and tailored to the individual due to disease heterogeneity, etc, etc'. Letter includes a request for earliest possible Appt with another / more senior GP to discuss my concerns and review all issues. 48 hours, no response. Chase-up letter to PM at local surgery, only to be told she is based at a different surgery. I call the other surgery. Letter has been received and ..you'll like this bit!.. (q. Receptionist): 'She's looking after 3 surgeries and will get back to you in the next 10 days'.
As I said, is it me / am I losing the plot?
Answers on a postcard please, once you've stopped laughing at my plight - You Cruel Lot (only joking) ;-/
Hey ho, the ever-thrilling world of PMR, Preds and GPs. Happy Days!
MB
aka 'Mr Disgruntled from WSM'
Written by
markbenjamin57
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No surprises there then!! This race to get you off steroids .....maybe alright for less serious health issues .... unfortunately most GP's have no real knowledge PMR/Vasculitis/GCA etc ....😳
You have my sympathy.... just remember Aunties know best ! 😊
Well, as I speculated here a while back, they perhaps do (or at least should?) have this knowledge - but are 'playing all ends against the middle' (if you know what I mean?) with patients on steroids so that they cover their backs professionally.
Mark, I am lost for words I just don't know what to say 😬
Well, I like to think I'm pretty. Oh, er, sorry, I meant .....pretty calm and accommodating of people's attitudes and behaviour, in context (try to see both sides, etc). But I must admit this saga has got me going a bit. Grrrr!
Mark how frustrating and frankly condescending! Sounds like a bit of ego working there rather than care of the patient
My gp forever wants me to up steroids etc. I had no luck requesting a decsa scan, menopausal age etc so take risonodrate (not AA) - often forget though 😉 and GP wasn't doing regular bloods even though I had raised markers - they are now as I have been put in leflunomide so checking fortnightly.
My doctor is good really so I make sure I am kept under his 'care' but if they looked back in the records he is not actually my GP - who was disinterested, completely - so I saw this one once, he was on the ball and I sort of adopted him as mine 😊
I hope the PM can help you sort this situation out - being ill is bad enough without battling with the medics
Yep PMRpro, I'm sure you're right. If some of these GPs got it 'right first time' and delivered better patient care, everyone would benefit - including their Practice Managers
Quite - like my GP who spends as long as she needs and gets it pretty well right the first time. You rarely have to go back because you didn't cover it all first time round...
Dear Mr Disgruntled from WSM, wouldn't dream of laughing AT you...WITH you, yes!! But oh for heavens sake!!! Another patronising GP!! It gets worse doesn't it?? At first I thought she (?) just wasn't listening to you but at least you're referred for a Dexa scan. It will be interesting to see if you ever get a result from your letter.
Actually I don't mind whether You Lot laugh with me or AT me - so long as you are laughing
Yep, I agree, some of these medics really need a lesson or two in The Bedside Manner and Customer / Client Service / Listening Skills / Building Trust etc. But how many of them would accept that they have any issues in these areas?!
Of course she knows better than Prof Dasgupta, whoever he is, is he a medical prof she thought? A lot of GP's dislike intelligent patients much less knowledgeable patients if you have to see her again play stupid ask silly questions, then do it your way. Best wishes. 😡
Oh dear, like Pete, what does one say. It sounds like it wasn't much of a discussion, more like a lecture and an uninformed one at that. I should count my lucky stars that my GP is "....." brilliant and always open to discussion. I feel your frustration!
Read page 4 in your hard copy and then go download it and send it to her. Reduction plans and Dr Sarah Mackie a world leading respected researcher words.
And Bhaskhar, so I have been informed, approved the plans that are on here on an App. No, I don't know what an App is and before you tell me, I don't want to know at my age. I still have a Nokia coming up to age 18.
You could also do the same with the BSR Guidelines and Treatment for both PMR & GCA and post them to her at her home base and say 'bedtime reading for you'. Mind it will cost you paper, ink and electricity................
I am short of time and won't write more - but hey - it took a long-time for you to meet a 'know-all' who 'knows nowt'.
Keep dancing.................................in the words of you know who.
Oh dear, Mark, not "laughing at your plight" at all (or only slightly!) but laughing at one of those GPs who prefer not to be faced with a patient who is 'educated' in their condition. All I can say, is stand your ground if my experience is anything to go by. I tried to get the recommended 2/3 year repeat chest X-ray to rule out aortic aneurism due to having been diagnosed with GCA. GP said she had no evidence of this requirement, adding that if I produced such evidence from my rheumatologist, she would arrange it. Subsequently sent her the required information on an email from rheumy. Letter came back saying that the rheumy should arrange this, not the surgery. I pointed out that I had long ago been discharged from the hospital and, in any case, she had agreed to arrange the X-ray on receipt of the evidence which I had now produced. I sat tight and about 4 weeks later received a form for the X-ray from the Practice Manager. I guess they didn't want the responsibility of the possible consequences of ignoring my last letter but it would have saved a lot of valuable surgery time if they had agreed in the first place.
I'm glad the chest X-ray turned out to be normal, now good luck with the DEXA, and I hope you soon make a complete recovery from your 'Man flu'- hopefully, it won't aggravate your PMR but don't attempt any further steroid reductions until you are completely clear.
I agree with all that you say and I'm sure you're right about (some, at least) GPs being wary of patients who are well-read / intelligent / questioning of their opinions etc.
Fortunately (and only due to my learning this forum), I can and will push back - and from firm ground in terms of knowledge and research. There certainly seems to be a culture in some of these professional practices of 'Pass the Parcel' (i.e. don't take responsibility) and / or 'Kick the Can Down the Road' (i.e. avoid the issues for as long as possible).
Thanks as always for your advice and encouragement
Uncle Mark, give yourself a pat on the back. Not only did you stand up for yourself, but you displayed that you're very knowledgeable about your illness. My bet is that you intimidated the GP with your knowledge. Hope you feel better soon!
Well, I suspected this - even though I really try to be diplomatic and non- confrontational with people in Life, in general. That's why it's sometimes better to put these things in writing - and on the record? We'll see, as always!
Poor Mark! I have a GP is 12 going on 13 (although he trying to grow a beard to disguise this. ) I have found the best way is to barrel in, give him the benefit of 20 years medical expertise - and that of course of the Aunties, then tell him what he intends to do(in case he has missed the,point or not understood what he is being told to do and waltz out with referrals, prescriptions etc held in my sticky paw. He usually manages to deal with the jaw drop as I go out of the door and of course it's too late to refuse by then
Wow there's two of us! Think passive aggressive rotweiller with a mission crossed with Hattie Jacques as matron and a bit of Diana Trent (Waiting for God) and that's my usual approach. Not forgetting the smile though I've been told I am terrifying......but really I am just a pussycat.....
I had a long discussion with Prof Sarah Mackie about whether it might be worth setting up "PMR/GCA Expert Patient" courses. We came to the conclusion it probably wasn't worth it - because Expert Patients often suffer at the hands of medics they meet...
You should know by now that in the eyes of some GPs, the patient is really nothing but a nuisance. Especially if they purport to know anything about their illness, and have the temerity to ask pertinent questions the GP doesn't know the answer to!
Although the system is there to make a complaint, it doesn't always give the result you want. Sometimes it's a matter of people saying one thing, yet doing something opposite, or in fact nothing at all!
It does make you feel better at the time, but the attitude of some makes a good working relationship difficult to maintain afterwards. You'll find in life that no matter how professional people are, nobody really likes to be told they've got it wrong.
Sometimes, as CT-5012 says, it's easier to nod wisely at the words, and then do what you know is best for you!
As my dear old mum used to say - no good getting old if you don't get artful with it! 😉
The poor woman is looking after 3 surgeries, the last thing she needs is an intelligent uncle who knows more about his body than she does. Just go away and heal thyself, like a normal uncle. Duh! (😂)
I hope my experience may help you. Eight months ago I was in a similar situation as you. I bounced around 4 and 5 mg. of pred for a year and could not seem to get lower due to considerable fatigue. My rheumatologist is good, but he was of the opinion that I probably had secondary adrenal fatigue after 5-1/2 years on pred, sometimes with high doses due to GCA added to PMR. He said I would probably have to stay on 4 or 5 mg. forever and at that dosage side effects were low. Not willing to give up at that point, I requested he refer me to an endocrinologist for a synacthen test making sure the referral said I seem to no longer have any active disease (good blood tests for a year and no symptoms beyond fatigue). He made the referral. After testing my blood for cortisol and ACTH (both were present), the endocrinologist switched me directly to an equivalent dose of hydrocortisone instead of pred stating that testing while on pred was unreliable. After a month, the synacthen test indicated my adrenal glands were capable of responding. She gave me a 2-month schedule to taper off the hydrocortisone – easier than off predisone, I found. I have now been off any form of steroids for 6 months. I have felt well some months and plagued by pains in feet, knees and hands some months. That is gradually lessening and I’m hopeful that once off steroids for a year, all will be rather normal. I live in the US, so I can’t say how you can get the referral I got through your system, but I can say that even in the US, privately paying for the one visit to the endocrinologist was only $110. The test was about $200, and the hydrocortisone was almost as cheap as the prednisone. I hope you can find your own way forward on this, because that is probably what you will have to do.
That's helpful to know, although, yes we have a slightly different system in the UK. I had overlooked that I could go privately for the synacthen test - I might have to do this if my GP won't co-operate!
Been ruffling feathers again sir mark? Well all I can say is happy jousting! Gps don't like it when the patient seems to know more about their illness than they do, it means they have to do some real work. Anyway, you keep ruffling 😂
You know you are getting old when your GP looks 13! When my son was about 12, he pulled the tendons on his wrist during a sponsored swim (50 metres of the crawl will do that to you). He'd been to a physio (privately) but it was getting expensive so we asked our newly-qualified GP for an NHS referral. Instead, he took my son's height and weight measurements and pronounced that he was on the '0.5 percentile'. My son said 'Are you saying that out of 100 boys of my age, 99.5 of them are taller than me?' The GP said that this was so, and that he would be recommending blood tests at our local hospital in case the sore wrists was something serious. Asked by my son if he could resume his swimming, the GP said 'You may never swim again'. My insistence that my son was of average height for his age fell on deaf ears.
Half an hour after we got home, the GP phoned to tell me that he was 'an idiot'. He had mixed up his centimetres and his inches.... .
Only just got round to reading your post Mark. I always try to follow how you are doing as I am at almost exactly the same situation as you - two and a half years PMR, and now tapering 5.5mg to 5, having previously been down to 4.5mg.
Anyway, I rather think your GP might have bitten off more than she can chew when it comes to telling you about PMR and tapering. As is frequently said, she does not experience the pain and discomfort, and clearly, does not have the knowledge that we all accrue from this forum.
I am sure you will manage to sort things out, even though you could certainly do without all the hassle. Your story just makes me thankful for the excellent GP and surgery which I attend.
I like to think that these types of GP are in the minority, but I fear for PMR patients who aren't so up-to-date with current thinking and research around steroid tapering, and / or simply don't have the emotional energy to question / challenge them (not surprising with PMR Deathly Fatigue / Brain Fog etc?).
That's why I've found it better to do this in writing rather than during a rushed GP appointment where things could get confrontational (not good for Stress levels!). It also puts things on record which, as I think someone else here said, they take a bit more seriously - as long as you get the facts and details right. As the old saying goes; 'The Devil is in the Detail...'.
I guess I'm fortunate in being able to put together a decent 'serious' letter (c/o my business background) but I agree with you, it's all hassle that we don't need. We already have enough with PMR!
Sounds like you have a good GP set-up where you are - make the most of it!
Sorry to read your story and you have my sympathy. No wonder you are disgruntled and even you are entitled to feel that way, despite the humour.I have met a stone wall with my doc as far as tests go. Last cholesterol test was done 3 years ago - reading 7.2. Not prescribed statins "because it is steroid-induced and no family history" I asked for it to be checked again early last year. Conversation went like this: " No, you cannot have it checked. Why not? Because you are not taking statins. But the last test should be compared with a new test? Could I have a DEXA scan please, it is over two years since the last one. No you can't. Why can't I? Because you have passed your 74th birthday, and we assume at that age you will be osteoporotic anyway. Take this prescription for alendronic acid as a precaution. But I have tried and it makes me feel so ill and faint, even following instructions carefully, it has its own side-effects so why take it when we do not know the state of my bones?" I came away feeling more than a little confused. So I took the decision to pay for a DXA scan privately, in London. For about £55 had a full lower spine, pelvis and both hips scanned. The radiologist wrote to my doc to say this patient does not have osteoporosis! That vindicated my decision not to take alendronic acid.
I took the opportunity yesterday while in consultation with an Endocrinologist about my thyroid nodule, to float the subject of my poorly functioning adrenals, after 9 years on Prednisolone. I related that for most of this year I have been flattened and wondered what hope there is for any improvement. I'm currently on 3.5mg. She says that when I am stable with no PMR symptoms from the latest flare I should have a Synacthen test and she is arranging this with my GP. I know without doubt that I would be refused that test if it was left to the GP alone to order it. So Mark keep on until you get the care and treatment that you are entitled to. Keep smiling, keep entertaining us, but gripe when you need to.
Well, that had a smile on my face (a sort of understanding one) - imagine if you were the same person in that surgery who had not been subject to the input of knowledge and experience from hereabouts - you would now really be on a rocky lee shore (WSM being near the sea - and me being in the Navy brings out the sailor in me!!). Frustrating but you seemed to have handled it with aplomb - which seems to have excluded going up one side of them and down the other on full volume. This makes me think of two things, first, the 'hidden' nature of the illness - I am working on issues with my bosses where they think everything is fine because I look fine - ergo - have some more work my lad....... ummm. Oh, and second - the modern world 'sausage machine' mentality to everything where the computer knows all - your basic symptoms probably 'gurgitated a percentage result - with PMR down the list - so take a couple of aspirin and see me anon..
With these types of 'conflict' I've learned to step back, try to separate emotion from facts, record all of the relevant details (e.g. what was said, exactly - I have a good recall for conversations) and then put it all in writing - with my requests.
I agree, so many diagnostic processes are driven by IT nowadays, not Human intervention and judgement. I guess that's fine in many contexts but it often seems to fall over in the medical profession - esp with slippery conditions like PMR!
Good luck with convincing your bosses that you maybe aren't as fit as you look. Again, maybe some hard research evidence / factual info from this site could help?
I loved your analogy of the naughty schoolboy...I ,too, feel like a naughty schoolgirl when I come out if the doc's office...almost any doctor. They get very bent out of shape if you show any trace of knowledge about your condition. I hate feeling like I know better than the doctor but there's nothing can do about it.
Your GP sounds like she has seen tons of PMR patients and cures them all in two years . My husband made a sweeping statement like that once.."I've seen lots of GCAs and they were all fine after a year" It turned out that "lot of" were two and "a year" was more like three😂😂
I really enjoyed your post. I wish I was as eloquent and brave to speak to my doctors like that! Wouldn't it be great if they taught docs some Empathy and Humility in med school?
Love the story about your OH - think you've got it in one. Trouble is, I have very accurate verbal recall, and have quoted my GPs claims back to her via the PM - alongside the 'proper' research evidence. They won't like that at all!
I totally agree with you about the humility / empathy thing with some medics - this topic comes up quite often here....
Good for you! I have a huge handicap in Spain as all my PMR lingo in English ,plus my Spanish gets really poor when I'm angry. I've always been a pushover and don't hope to ever be taken seriously by the ones with an attitude problem..I just act meek, and then just follow the aunties' advice. Since I have my OH for prescriptions , I really don't even need anybody else besides the aunts and uncles... Could continue perfectly fine with just the forums. I stick with the system here because I don't want to have to pay for blood tests and if I ever get GCA , I figure I may need them for something..
I'm going to copy you and write an official complaint about my rheumi .He ordered one of his interns or residents to give me the instructions to get tested for TB, Hepetitis and B and HIV.No explanation was given.I wrote this on another thread and learned that these tests are protocol for pre treatment with Actmera .I was not informed about it,ever, the rheumi just mentioned it literally as I was going out the door that we "may" try tocilizumab ( I don't know how to spell it but the rheumi didn't know how to pronounce it, even) ..that was over three months ago.How does he even know that I will consent to it, and be has already ordered the tests in preparation.
According to my HO, we, the patients need to write complaints more..I'm not sure if people with such huge ego can change, though.
I can only imagine the scope for confusion and mis-understandings with medics about complex medical things across languages Gaijin - it's often bad enough with medics in a common language! ;-/
Yep, putting things in writing / on record makes things more official and 'demands' a response. It also helps you to clarify and structure your thoughts / experiences / requests better than in a spontaneous conversation - where emotions can get in the way of clarity and the facts.
I'm fortunate because I've trained professionals in Business Writing skills for many years and 'know the ropes' in terms of structuring and composing letters / articles etc, with clarity, and to get results.
It reminds me of the old saying (attributed in different forms to various historical figures):
'I'm sorry this letter is so long, I didn't have time to write a short one'.
Will let you all know the progress (or otherwise!) in the GP saga - many thanks in the meantime.
Just what you need then - all this extra stress! You know what your body needs and what the profs advise. With your wit you can develope a strategy - you, the profs, this forum against the GP - I almost feel sorry for her! (almost, I said). "Don't get angry - get even".
Nothing funny about your plight. Fire the arrogant b___h and find a more compassionate soul. You shouldn't have to work so hard. The doctor works for you.
Unfortunately, in the UK / NHS it's not so easy to 'fire' a medic (unlike in the business world that we both know so well). But in my experience, if you put everything on record, that does wake them up a bit because the medics are overseen by various professional bodies: not just for their clinical decisions, but also their patient (client) care.
Poor Mark. All I can say is Thank Heavens for the knowledge gathered from THIS SITE and THE AUNTIES when having to deali with arrogant professionals like this!!!
Yep, I thought about that in between all of this current nonsense with the new GP. Without the massive amount of wisdom, expertise and support from this forum and You Lot, I would be feeling totally confused and feeling even more fed up!
Well this is really a more detailed progress report from your last post with the added result of no progress!! I think so many of us have GPs like this. I am very aware that I have a very fractured relationship with my GP who told me no way had I got GCA, alarm bells would just be ringing!! - well they were for me! So took myself off privately to see a Consultant who wrote to her re my GCA symptoms! I think our relationship seriously went downhill after that. I have been refused a dexascan, refused a further vitamin D test, have been sneered at ( a little) at being on a "fancy" drug- Lefludomide, even told I would probably have to come off it if my blood pressure went up, and have been told that sooner or later I will have to " bite the bullet" to reduce the steroids. I have since seen two other GPs in the practice who are , in my view, a lot nicer! I have managed to get dexascan done with one of them and maybe will try another one for the Vit. D test. I have decided that with my own GP that it is really the immovable object meets the irresitible force and even though like you, I tend not to make a fuss, I equally stand my ground and will be assertive but very rarely do I move forward with her. So I think that the expression " there is more than one way to skin a cat" comes to mind. You have written to the PM but it appears that although long term this may produce a result, short term they might pull together. Maybe see another GP in the practice to get what YOU want - I.e your FBC and your test. As far as the advice given re reduction- well does it fit in with guidelines and your own experience - no and is totally, in my opinion anyway, unreasonable and irresponsible. You know your own body and you're following that. All this though could and sometimes adds to the stress doesn't it so we have to ride above it and sometimes achieve what we need via the back door! All best wishes for a good outcome. Keep us informed. 😀
1. It all (quality of patient care etc) depends on the individual GP's knowledge, attitude etc.
2. Some try to 'bully' / guilt-trip patients into unrealistic steroid reduction regimens without taking their individual context into consideration.
3. Many under-estimate their patients' intelligence and level of knowledge about PMR etc - and feel upstaged / become defensive when challenged (!)
4. Yes, it's stressful when you feel you can't trust your GP's advice and expertise, and / or are upset by their poor relationship / communication skills
5. Many patients know themselves / their symptoms very well
6. Yes, if in doubt, ask for a second opinion and / or a Plain English explanation as to why a particular GP is advising / not advising a course of action
7. Beware the risk of a GP practice / their PM 'closing ranks'. If so, report in writing to, and seek advice from their regulatory body (e.g. the CQC in the UK?)
8. Keep accurate records of ALL interactions with the GP / surgery ('the Devil is in the Detail..')
9. Take a deep breath and be aware of your Stress levels in the process!
10. Take advantage of the trusted Support and Advice here
I'm sitting on my hands waiting for the PM's response to my detailed letter - when she gets around to it! :-/.
I did book, and get a double Appt jinsac - but that didn't seem to make much difference! The other requests seem to be nigh-on impossible with my local GP surgery. Just getting through on the phone is a feat of determination over motivation.
Here's an extract from my hand-delivered letter to the surgery PM about getting appointments (not to mention the GP issues!):
'After trying continuously to get through to the surgery by telephone from 08.00 to 09.30, on the 11th attempt I was informed by the receptionist that the earliest available appointment (with Dr ---, who I understand is my regular GP) was two days later, but that I would have to telephone you on the day to book this.
In response, I explained that, due to the problems experienced with the surgery’s same-day appointment telephone booking system today, I was not confident that, by calling you again on the day I would in fact get a same-day appointment - and I would therefore be back to square one. The receptionist then informed me that the earliest pre-bookable appointment with any other GP at the surgery is 2 October (3 weeks from today)'.
Hence the letter on Monday (last). AND, a further hand-delivered letter will follow tomorrow, since I didn't even receive the courtesy of an acknowledgement. I called them after 48 hours again to enquire about receipt of my first letter. And then, only
a casual 'she's very busy and will get back to you in 10 days' response. Can I trust that? Methinks Noooooo!
The phrase 'Adding Insult to Injury' comes to mind from a Patient / Client service perspective? The stuff of Courtesy / Managing Expectations isn't the proverbial Rocket Science. Grrrrr
Enough already! I'm off to play with my toys now, and do some colouring-in in my new Big Boys' Book of, er, something or other
Laughing with you or at you, what does it matter, we all look forward to your banter. It all sounds very frustrating to me having a GP who is just not listening. You seemed calm markbenjamin which is more than I would be in same situation, I would have hit her over the head with a wet lettuce......or just run out of the surgery crying....depending on my mood. Keep up with the positive mood dear man, you are good for us all. take care, Maz
Seeing the funny side helps me to survive these things (and keep the stress levels under control). And You Lot help ME in the process too!
I might just try the wet lettuce strategy if all else fails. I checked the British Hard Leaf Salad Society's website (yes!) for the suitability of different types of lettuce in administering pain on unhelpful GPs. Now, will it be Cos, Lollo Rosso or Iceberg (Iceberg probably best as its harder - ouch!
My partner has tried various types of lettuce to administer pain when I am a very naughty girl and yes Iceberg is definitely the hardest.....Ouch Ouch ! Ha ha.
My partner has just read my last reply and says you are bringing out the worst in me Mark and says I am daft as a brush....now the brush really did hurt !! Have a nice day, sunny here in lovely Hampshire x
So sorry to hear you have had to battle with this when you are keeping us all cheerful and up to speed! Do hope you get some progress soon. Incidentally I am hugely impressed with ESR 2 - my last one was 19 (originally 101) and I suspect it is going up again. Time for another blood test, although I understand that they are not a totally reliable indicator. I have also managed to get down to 4mg after 12 months on pred but think that may be a drop too far pain-wise and a rethink is necessary! Prof Das Gupta's guidelines should be enough for anybody. Best wishes and keep reporting! Especially on progress with the wet lettuce .... 😊
Well, that's not unusual with some GPs?! Have been away for the weekend to clear my head, back on the case on Weds ;-).
As for ESR readings, my understanding (correct, I hope?) is that a low and / or 'normal' reading doesn't necessarily tell the full story in terms of PMR disease activity, since the Preds supress it and / or it can vary +/- for other reasons too. My issue with the GP is around the (declined) routine FBC blood tests especially, as they give the bigger picture on other factors that the Preds can influence, like cholesterol levels, Diabetes risk, Liver function etc etc?
Hey ho, we'll see what the GP Practice Manager comes back with after my letter quoting Dasgupta et al - and about steroid tapering in context. 10 days is more than long enough wait, methinks...?
Keep steady at 4mgpd, it can be a slow and frustrating journey even at these relatively low levels - as I well-know and many here will confirm.
Will be back on the hotline v. soon, wet lettuce at the ready
Have a good week to you and all here, more Mirth to come..
Thanks, MB! Glad you're feeling a bit brighter now. I think the ESR conundrum is gradually getting clearer. I also meant to thank you for the article from you and the Prof in Newswire - amazingfull explicacious as one of you might say!
Good luck with GP/PM and keep the lettuce handy! MG 😊
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;-/ 
The other requests seem to be nigh-on impossible with my local GP surgery. Just getting through on the phone is a feat of determination over motivation.
Synacthen Test
Hello I am IanR I am new here. I have been on 40mg preds for a month. I was diagnosed with gca last Thursday
Blood test.
Big time flare up so now on 7.5 😱 update
