Update AA and Dexa, and Dr Mackie

Hi everyone

"Man from Delmonte he say yesss!" Sorry about that - a very old tv ad.

GP said I can have the dexa and surprised that I had not had one already???! Then he realised I was on AA, told me I was on bone protection so all should be ok. I said I'd rather not take AA unless scan proved necessary as it can cause problems. Got bit of lecture about that but he has agreed to scan.

Getting him to refer me to a rheumatologist was harder. My reason is the constant pain in upper back,shoulders and neck. His reason is that I have not been able to reduce preds fast enough. He says that I need to reduce 1mg every 4 weeks. I explained the dead slow method I have started but he disagrees with it and said I'd be on it for years. However in the end he agreed to refer me, so I asked for Dr Mackie and stressed her interest in PMR but he said I could not choose and all rheumatologists know PMR.

But at least I get dexa and maybe nhs choices when it comes to referral.

41 Replies

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  • Hi

    Actually the ad is no so old- it seems to have been revived on some channels!

    Another GP who doesn't understand PMR and Pred. If you're pains are bilateral could be you need more not less - unless it's something else of course, hopefully a Rheumy visit will clarify.

    Of course you're going to be on it a long time, it doesn't work like other meds on other illnesses.

    Oh Lordy!

    Good job we can have a witter on here.

  • Yes it helps to have a rant and thank you for your support, I feel more inspired and will insist!

  • He's wrong - and that is pointed out in the link I gave you (didn't I?). Someone else was told that and because of NHS choices ended up with a right prat who knew nothing about PMR. And yet another demanded an appointment with the senior partner - who said yes immediately because they knew they had to!

    "If you are referred for your first outpatient appointment then in most cases you have the right to choose which hospital in England to go to. This will include many private and NHS hospitals that provide services to the NHS.

    You are also able to choose which consultant-led team will be in charge of your treatment, as long as that team provides the treatment you require.

    Therefore, if you wish to be treated by a particular consultant for a procedure, you can choose to have your first outpatient appointment at the hospital where the consultant works, and to be treated by that consultant's team – but this doesn't necessarily mean you'll be seen by the consultant themselves.

    This choice is a legal right, if you are not offered a choice at the point of referral, ask your doctor why and say that you wish to go through your options. If you are still not offered, or refused, a choice, contact your local CCG."

    nhs.uk/NHSEngland/AboutNHSs...

    It is your first appointment - you have a legal right. If your GP won't agree - go to the CCG. Do not be bullied by someone who does not know their company rules. He may think all rheumies know about PMR - there are a lot of patients who would disagree from personal experience. Mostly bitter!

    So: you want to be referred to Wharfedale Hospital in Otley to Dr Sarah Mackie's rheumatology team. No ifs or buts. Get your husband to call them if you are too scared!

  • Yes thank you I have your link. I will call the surgery on Monday, tell them I definitely want Sarah Mackies team and quote the link if necessary.

    A great big thank you for all your help and support in all this.

  • Marlenec, last week I did exactly what PMRpro suggested to you and my GP is referring me to Dr Mackie. I said I didn't mind whether I went to Otley or Leeds, whichever would be quickest. I think I'll have a long wait though. Unfortunately, Dr Mackie doesn't do private appointments as I emailed her to ask as I would have been prepared to do this to speed things up. Understand how you feel. Best wishes.

  • PMR pro I know its off topic but could you please give the link about right to be referred to consultant of choice again. I have been given the name of three specialists by the Scoliosis society and my hitherto symptomless scoliosis has started to give real problems in the form of a "shout out loud" muscle spasm in my back. The conventional wisdom seems to be that there's not much to be done at my age but the society says there have been improvements in managing the condition which I believe my Parkinsons has caused to get worse. Must be an improvement on the GP's desultory raising of my jumper at the back and silent mmmmmh!! I know the walk-in centre I went to made recommendations but two go's at extracting this from two different G'P's have yielded nothing. Paranoia is setting in. I have access to the medical records I have access to (!) but not to those which come through on a different system.

    So much for freedom of information. So I am gathering my ammunition before approaching the surgery . By the way, by coincidence, around about the same time you recommended it the other day I happened have a private physio massage to the offending thoracic region and could hardly walk afterwards b ut I'm a lot b etter today..

  • paddyfield - the link is 3 above this reply - from pmrpro - in blue and begins nhs..

  • nhs.uk/NHSEngland/AboutNHSs...

    If you have muscle spasm a decent sports physiotherapist or sport massage therapist can probably help a lot. At whatever age. Here even the rheumatologists happily do hands on therapy! I had my second appointment with the rheumy who has been doing myofascial release on my shoulders, it's pretty agonising at the time but boy does it help! I'd love to know what she and the pain specialist I used to see did to build up such powerful thumbs!!!!

  • Well done! Round two, follow the advice and insist. 😡

  • I shall!

    Thank you for your support.

  • Hi Marlenec

    From experience, I agree with all of the advice here. My conclusion? Some GPs and even Rheumies aren't always 'right', or as well informed as they could be about PMR and GCA, for all sorts of reasons. This was a predominant theme in the Bristol PMRGCA Roadshow this week, and why this forum is such a valuable resource at all levels.

    As Harry Hill (for those not in the UK, he is a very successful British alternative comedian now - and was once a Doctor!) would joke: 'There's only one way to resolve this.... FIGHTT!!!'.

    I can imagine the scene - a battalion of several hundred (thousand?) PMR / GCA sufferers lined-up against, and defiantly skirmishing with an equal number of defensive GPs and Rheumies across a crowded medical battlefield. Faulty diagnoses and reliable counter-diagnoses are exchanged like bullets in the fray. Big guns fire in the form of PMRGCA Forum posts and endorsements. Counter-offensives are launched by the Meds wielding Ph.D certificates and 30 year-old data. The fight gets dirty, and there are many casualties :-(

    Then, at some point, a Truce occurs as if by magic. Both sides cease hostilities and end-up kicking-around the proverbial football like allies, not adversaries, for a few moments at least. Well, stranger things have happened! ;-)

    Good luck and keep us posted...

    MB :-)

  • Tell me about the roadshow then...

  • Well organised and attended (50-ish of us).

    Kate Gilbert facilitated well, Prof John Kirwan did a very informative and entertaining piece explaining the anomalies between PMR patients' (to us, naturally quite common) experiences and GPs' relatively (statistically) rare experiences of presentations of PMR - hence explaining things well in terms of GPs' (and even some Rheumies') lack of knowledge of the condition and / or suitable treatment regimens. He mentioned the topic of steroid tapering, and how large doses of the preds act very differently on the body to lower doses, although it is essentially the 'same' drug.

    It was mentioned by another speaker that the 3 main symptoms of PMR / steroid treatment are: Cognitive, Emotional and Physical 'pain'. Slow tapering is a non-negotiable, according to Prof Kirwan. Good to hear this.

    Other speakers included hospital / specialist consultants who deal in the diagnosis of PMR / GCA and how to spot GCA symptoms opthalmically (eye / retinal examinations). There was massive consensus in the audience that 'Life post-PMR is very different, and that most were fit and active previously'.

    Prof Kirwan (as I remember it) suggested that Pred really is the Drug of Choice in the majority of PMR / GCA patients due to its low cost - approx. £5 per patient per year typically (but don't quote me on this), and alternative treatments have their own drawbacks too. So, pred is still the way to go until or unless there is a breakthrough with something better.

    One point of note was that with GCA, temporal biopsies to assess the degree of inflammation in the relevant artery / arteries can be very 'hit and miss' due to some parts being clear, and others not. But we know this already...

    There was also some input from a speaker around the push for greater research funding around the causes of PMR / GCA in parallel with more effective treatments. It makes sense..

    Ohh, brain whacked out after all this writing but will continue later..

    MB :-)

  • Mark - was there any discussion about patients' fears of PMR sufferers developing GCA and practical steps to monitor/deal with such a perceived event? You could put it to the back of your mind but it's a worry for many.

  • Hi Rokerman

    Of course, the fear of GCA developing from, or independently of PMR is a huge one.

    There was a lot of information to take in at the Bristol Roadshow but I seem to remember Prof Kirwan and another speaker (Dr Catherine Guly?) describing the various symptoms of GCA and stressing that, if in doubt, to get an urgent examination. Locally, the Bristol Royal Infirmary (I think) offer a Rapid Access clinic and fast track pathway service for both PMR and GCA to assist in collaboration with GPs and speed-up the diagnostic process. Maybe others here can confirm that I understood things correctly...

    Again, from memory, it seems that (and as we perhaps already know) the main issue with GCA symptoms is that patients don't recognise or report / get treatment for them soon enough, by which time any sight loss is irreversible. At the same time, I seem to remember one of the speakers suggesting that sight loss with GCA is relatively rare (although that's no consolation to those who've experienced it!).

    That said, it might be useful if we can get extracts / a summary of the various presentations from the Roadshows as a stand-alone document so that we can pick up any nuggets of information that aren't here already?

    MB :-)

  • That's a good idea - thanks Mark. I've a Dexascan arranged at Kingston Hospital next week - think I'll ask, when there, if they have any fast-track entry - I'm not hopeful tho'!

  • The truth is that although it is being rolled out, the fast-track as trialled by Southend is far too costly for district hospitals with a less populous hinterland than the SE to cater for. A NE hospital tried it and abandoned it on that alone.

    IF GPs would phone the local rheumies they would almost always get an emergency appointment - like a heart attack or stroke gets. Part of the problem has been that GPs are under the impression that urgent means immediate - it doesn't, for years it has meant a bit sooner than routine.

    What is needed above all is GP education.

  • Fingers crossed Rokerman, keep us posted! :-)

  • Hello Mark - the Dexascan was carried out yesterday - unremarkable really but the instructions for turning up required the patient not to wear trousers with metal parts - zips etc. So I arrived in my pristine track suit (the gym never suited me..) - I've never been to a hospital looking so fit, felt a complete fraud!

    The radiologist from Poland - sweet girl - hadn't much clue as to why I was having the scan - had never heard of PMR/GCA, but listened at length and attentively to my patient history and symptoms - could see why I had concerns as to any GCA onset and agreed that A&E should have an agreed fasttrack procedure.

    Needless to say, she didn't think there was one nor anyone available to discuss it! So - as she suggested, I will take this up with GP and Rheumatologist!

    How are you keeping out west?

    Over the last 2/3 days my hands/knuckle joints seem to have swelled up and are extremely painful - have you ever heard of this? By the way, after my Dexascan, I had an encounter with Torquemada - sorry, I mean my new dentist..... He informed me of the possibility of osteonecrosis - think the hands gripping the sides of the torture - I mean dental - chair may have contributed to the knuckle problems.......

    All the best!

  • Hi Rokerman

    Ha, I can imagine you bouncing into Radiology in a double breasted pin-stripe track suit! Hope the scan results are ok..

    It doesn't entirely surprise me about the radiologist and fast track (or lack of) at some A&Es - it seems a bit of a postcode lottery? I think the moral of the story is to push, push, push your GP if you are worried about / have any symptoms of GCA.

    I'm not bad out West, thanks. Weston super mare is waking up for the Spring / Summer season, warmer weather and longer days at last. I did struggle with more pain, stiffness, fatigue etc during the cold spell, I'm certain the weather affects PMR as much as anything. Hey ho... Fortunately I don't get any joint problems as such, just the standard issue bi-lateral stiffness in shoulders, thighs etc. But it's more or less under control with the Preds, hovering around 6-7 mgpd and hopefully reducing again soon. It's a long old journey but I'm managing to do some physical work in between - I think it's the natural fidget in me!

    Don't mention dentists - I'm overdue for a check up. That said, my local one is hilarious (but very well respected). We always spend the first few minutes of a consultation cracking gags and falling about laughing - it helps when the needle goes in!

    Keep well and let's look forward to a good Summer (at last)!

    MB :-)

  • Hehe - you've touched a nerve there (pun intended) - this guy engaged in humourous conversation for about 15mins too - before setting to with a vengeance with his Black&Decker.....

    My rearranged USA trip is coming up very fast (he'd been there, done that of course) - am trying to keep stress levels down but I've got a lot of work to get thro' in the next 10 days - am seriously of the opinion that that this doesn't sit well with PMR!

  • True, Rokerman. It's well-known that Stress doesn't help in the PMR equation - but how to avoid it?! Then again, I'm sure a bit of 'positive' stress (i.e. excitement / anticipation) is good for you too. Those little adrenals need a bit of healthy stimulation along the way ;-)

    Have a good trip across the pond if we don't catch up before :-)

  • Er, folks, the dexascanner operator has as much relationship to A&E and, in most places, radiology as I do! In the UK you don't have to be a radiologist to use one, you just have to the appropriate training. In my husband's department it was a medical physics technologist trained in nuclear medicine. Really not the same thing!

  • Haha - no, wasn't expecting too much from radiology operator (interestingly, passed the 'Nuclear Radiology' dept on the way .....!) - just hoped for a contact at A & E and felt obliged to explain 'why'

  • What we call PMR is just the symptoms of an underling condition - and is often confused with LORA, late onset RA. Or other forms of inflammatory arthritis. Which can manifest in the hand joints, either fleetingly or over longer periods.

    I had synovitis and tendonitis with PMR - but it wasn't the knuckle joints that hurt, it was the fingers.

  • Thank you my. I have read some of your earlier posts. SUPER SILLY just what we need 😀

  • Ah, thanks so much Marlenec - I blame you lot for encouraging me! ;-)

  • Mb

    As if!

  • I too have had resistance from GP about dexa scan. Asked him earlier this week to get one and got a pompous, leaning back in his chair touching fingertips "why?". After a lecture he looked at his PC and realised anyone under 65 with PMR should get one plus all the blood tests. Told me grudgingly that it could take over 6 months on waiting list and do I still want one?! "Yes" came my loud reply!! I still want to know the state of my bones after all this medication!

    Jeez!

  • Good for you. I didn't get support when asking. I think i can get one anyway.

  • How arrogant! I wonder if that's true about the waiting list.

    Good luck with everything.

  • I waited less than a month for my dexascan, after asking the GP to refer me. But I live in West Wales and maybe I was lucky, for a change. I won't be taking any additional meds until I know the state of my bones at the start of steroid treatment, although now I read that omeprazole can damage bones too.

    Seems we can't win.

  • It might be in some areas but I got mine within two weeks here in Milton Keynes. And my new GP was very good when she saw it was recommended that I had a dexa scan five years after my first one she ordered it straight away. I've had PMR 6 years. The scan showed osteoporosis so I'm now on AA.

  • When you are on pred you should have follow-ups every 2 years. Any sooner is not much use as the changes it has to measure are actually quite small and it isn't sensitive enough.

    Waiting times depend where you are. Here in northern Italy I waited a whole 2 days! I got the prescription, rang to make the appointment and was offered one the next day - but we wanted to make a trip of it as it is an hour away and in the middle of a lovely town.

  • I'm in Scotland

  • I have been writing on this forum before , and have had ups and downs , and found this more helpful than advice given from my doctors .

    For two and a half years have asked to see a rheumatologist and always told it wasn't necessary ,even though my inflammatory markers crp and ESR were mostly over30 having come from 59 on the first diagnosis November 2014 .

    I get severe headache and and reduced at Christmas time from prednisalone to quickly .Usually reduce 1/2 mg per month . This time reduced 1and1/2 mg by mistake . Exmas stress etc . Told to go up to 10mg 3days drop to 5 mg . Due to the fact that I didn't know I was brewing chest infection ended up in Luton an Dunstable hospital where they referred me to their rheumatologist department Yes Yes Yes .

    My inflammation marker crp was showing at 91 . However antibiotics due too the subsequent chest infections brought it back down. Was

    So now i am ecstatic because I am having a Dexascan an MRI being referred to a pain clinic . My rheumatologist suspects Rhumatoid Atheritis in my neck rather than GCA or PMR . Neck shoulder pain possibly agrevated by taking steroid . So after all this time , have been in severe pain on and off for 45 years and more ,some one is listening and trying to help . If your as lucky as I am I'm sure you will get good help 💐

  • Car00b you really have suffered. But now at least you'll get the help you should have had years ago and you can see a light at the end of the tunnel. Airing our grievances on here is such a big help mentally, we not only have someone listening but get comfort from such good advice as well. I wish you well for the future.

  • Good for you Marlene - it can be a bit like swimming thro' treacle (and I'm a non-swimmer.........), getting the right treatment - but looks like progress for you!

  • Thank you Rokerman - fingers crossed!

  • well done and good luck

  • Thank you 1602

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