I had my first appointment with Dr Mackie at Wharfdale Hospital in Otley, thanks to a recommendation from PMRpro. I just wanted to share the sheer healing joy of being with a doctor who valued me as a person of worth and was genuinely interested in PMR and GCA. I had a full physical examination, a long diagnostic chat, an armful of blood taken ( including for the first time looking for vitamin D deficiency) two x- Rays. She speaks our language, approves of the dead slow method of reducing Prednisalone. Everyone in that little hospital was friendly and efficient. All the tests were done in one building and there was next to no waiting ( it made me fear for it under our present Government). This is how it SHOULD BE! she will give advice about dosage etc. once the results come through. So it is worth shopping around for a good, engaged doctor instead of struggling on alone. This forum is gold dust. I am also joining Dr Mackie's research project into the debilitating fatigue that accompanies PMR and GCA. Hopefully a tiny contribution to the greater good.
A lot of pain and stiffness this morning, I have either relaxed my guard or it was the 3 hour round trip to Otley. But no fear hurrah!
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SheffieldJane
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I work in the NHS as a nurse and have met many consultants in my time. I was under Dr Mackies care for 20 months. As you say she genuinely cares and is very empathetic. She is definitely the best consultant I have ever met, it is like chatting with a friend when you see her. I have now had a change in diagnosis, so have been referred back locally. I also had the privilege of helping with her study into steroid side effects, and why some get more than others. I will genuinely miss her, and hope my new team are as good as she was. Good luck with your recovery 😁
No doubt the trip, and taking in new information! Glad you've found such a good Rheumy, and yes, as you say you worry for the hospital - let's hope you're wrong.
Be interesting to see how project goes, please keep us informed, I think the fatigue is one of the most difficult things to come to terms with.
By the way - the amount of work she puts in is mind-boggling! I was at a conference in Whistler with her in May. The work day was 8.30am to 10pm finish with no breaks except for meals. She worked with groups before breakfast and over mealtimes - and re-wrote documentation overnight. She arrived from the UK carrying a hand-luggage sized bag and was never not perfectly turned out and unfailingly charming. I am very privileged to be able to collaborate with both her and Rod Hughes! (other good doctors are available )
Thank you so much for the gift of recommendation PMRpro. We really do need hope and light with this hopeless disease. I could hardly get out of the car today, it's beginning to look like my first flare, not as dismaying as it would have been, I popped 1 mg Pred. To celebrate!
So pleased you had such a good reception and interaction with your new rheumy . It makes such a difference. Good too that research is being made into fatigue. Will be interested in how that develops. A positive start to 2017.
I live in Edinburgh and had my first rheumy appointment at the end of November 2016. Unfortunately my follow up is not until September 2017! I find this a bit depressing as I am struggling at the moment with getting the right dose and have bumped myself up to 19mg trying to eliminate shoulder pain. I'm seeing my GP next week but would be happier if I knew I could see a rheumy sooner than September. Hence why I'm thinking of trying privately but would like to spend my money wisely! Decided I'm happy to travel if I have to - in the UK anyway! Any Scottish recommendations out there??
I would suggest before you spend money on a private rheumy (though have you checked who you saw before does private, otherwise you will start from the beginning again?) you see a good sports physiotherapist about the shoulder and get their opinion.
Is the shoulder pain both sides? Have you had x-rays to rule out rotator cuff injury? Did the original dose of pred improve it at all?
I saw a rheumy who had been brought into my area to cover the usual rheumy's clinics as the list had become too long. He doesn't usually work here and said it would be unlikely I'd get referred to him as out of area!
I am seeing a good sports Physio but with mixed results as my pain has fluctuated. Ruled out frozen shoulder but suspected rotator cuff but my symptoms were so acute it was difficult to establish exactly whether its the PMR or me! I have my exercises to do which I am tolerating more easily now. Its been a bit of a balancing act trying to work out the right level of pred as shoulder and upper arm pain has never gone away completely but is better now I've increased to 19mg from 16mg. (I had been tapering on your slow reduction method and it was always my shoulders and arms which were never pain free no matter the dose) The only time everything was totally improved was when I started my original dose of 20mg back in April 2016. I reduced far too quickly I now realise (lack of correct advice, my ignorance) and it has all come back to bite.
I've never had X-rays or ultra sounds on shoulders but that's what I'm going to investigate when I see GP this week. I had a steroid injection in right shoulder from rheumy which gradually worked but didn't remove pain totally. Perhaps it won't go away totally but I do hope it will be eased enough so I can do exercises to strengthen my arms and shoulders.
Scotland is slightly different from England but even there it is possible to have some choice. Most hospital doctors are unaware of the NHS rules - so it might be worth asking your GP if you can see this guy if he has moved back from the temporary cover. Have you read the link?
As far as the PMR is concerned I'd say you should be aiming for the same as you achieved on 20mg. Was that total relief - or total compared with the week before? Few people are totally pain-free even on higher doses of pred. I found the hip, hand and foot pain I had took a few months at about 15mg to fade - maybe you just need a bit longer. How far did you reduce?
I don't know anything about the NHS rules but happy to find out. What link are you referring to? The consultant I saw was shipped in from neighbouring area to help reduce the waiting times for the main consultant in Edinburgh. I have been told I will see the main man at next appointment (Sept) but I will need a half hour appointment as it will be my first time with him! These slots are harder to come by hence delay - all rather frustrating. I will ask my GP whether this is essential and can't I just be considered as a follow up and hopefully I might get an appointment faster.
When my PMR was first diagnosed I had no shoulder or arm pain it was all hips and legs! Upper half only came in after I had golfed over the summer - only a few times a month, not daily! - hence why I wonder whether I injured myself obliviously whilst on pred. I then had a stressful few months as my father took ill and sadly died by which time my flare had firmly taken root. Never really recovered pain wise so went up to 17.5mg (I was on 12.5mg foolishly as wasn't doing well!) The slow reduction began after discovering this site and I was about to embark on new dose 15mg for 7 days, 16mg for 1 day. Had such a bad week last week I abandoned it and went up to 19mg which has definitely helped. Should I try a reduction from here or could I try dropping back to 17mg in one step?
Thanks for all your invaluable advice and apologies for my long posts!!
Unfortunately the situation is different in Scotland and I can't find any guidelines online other than this statement:
"You have no right to see a consultant or a particular doctor, although this can be requested. Your GP cannot insist that you see a particular consultant or doctor. You do have the right to see a doctor competent to deal with your case.
If you have special reasons for seeing a particular consultant, for example, if your child is the consultant’s patient, you could ask for an appointment, explaining your reasons for wanting to see them. If you still have difficulty in seeing the consultant, you could write to the hospital administrator asking for their help.
You may wish to get a second opinion after seeing a consultant, either as an out-patient or an in-patient. You will need to request this from the consultant, who may arrange for you to see someone else. If the consultant does not agree, you could ask your GP to help."
So I suspect it is a case of asking and hoping that your local Health Board agrees. They will refer to England if you can make a good enough case for specialist care but it will depend on the financial status of the Board.
I am so pleased for you, Jane and hope you'll soon be feeling better after the journey. I used to live in Sheffield, but moved to West Yorkshire and live 9 miles from the hospital in Otley, but my GP has told me I am 'out of area' for a referral to Dr Mackie! PMRpro has confirmed what I knew and I'm seeing the senior partner at the surgery this week. I worked in the NHS for almost 40 years, with a long-service award, but I'm only asking for something that any patient is entitled to and so glad that you have been 'allowed' the referral.
Hi Rugger, I had no idea that my GP referral was unusual. I assumed that it was the free, competitive,market that the present government are keen to promote in every aspect of life. So a consultant of excellent repute would get referrals from all over the place and similarly "failing" consultants would eventually be winnowed out. All my GP said was that we do have perfectly good Rheumatologists in Sheffield - yes but not with a special interest in and knowledge of PMR. Please persist!!!
I saw the senior partner at my GP surgery yesterday and he's referring me to Sarah Mackie! It's 9 months since my diagnosis of PMR and I've been pretty much looking after myself since finding this forum, but I'm looking forward to seeing her and contributing to her research, if appropriate. Otherwise, it will be good to see someone who understands the condition, if only to confirm the diagnosis and check if I'm doing the right thing with my steroid dose - I'm using PMRpro's dead slow regime.
I hope you're feeling a bit better this week after your trip to Otley.
Take care, Sue. (My hobby is rug-making - hence the pen-name and photo! Thankfully, PMR hasn't affected my hands.)
I am new to this brilliant site as well - PMR diagnosed just last week - on PREDS now and what a relief - not just because the pain has diminished, but to actually "get through" to my GP that no, this is not arthritis - I already have that in my spine, so I do know the difference between joint pain and muscle pain, agreed to bloods and result was CPR was 8, which verified pmr. well, I know by what people on this site say it will be an uphill struggle sometimes, but consider I was lucky that my GP agreed with blood tests being taken - I do believe that as we get older we are less likely to be fobbed off with take up to 8 paracetamol a day for nearly every ache or pain we go to the surgery about - most of us put up with feeling rough for about 10 days or more before we even decide to get an appt. - well, try to get an appt.!!!!!!!!!!!!!!!! Being older, I think we "stand our ground" more than just accepting answers that we maybe would have accepted a few years ago, cos we always thought the Doc. was right!
Sheffield Jane, I am so glad to ear you've found a competent and caring individual to help you deal with your significant challenge. I know from first hand experience that this will make a difference.
Hello Sheffieldjane, so pleased you got on well with Dr. Mackie, yes Otley hospital is a lovely friendly place, easy to navigate and as you say next to no waiting. My only problem when I go there, for whatever reason, is I bump in to someone I know, and it's a little difficult having a conversation without actually asking why they are there! It's good you are joining the research project will this be done at Chapel Allerton hospital as that's where I have to go for the study? You must let me know if you come over to Otley again or for that matter Chapel Allerton and perhaps we can meet for a coffee. I only live about three miles from Otley and not that far from Chapel Allerton so I am very lucky. I am actually at Chapel Allerton on Wednesday for the Stay Activ study I am involved in.
Although you were tired, I am sure it was well worth you making the trip.
I wish I could find and attend clinic with Rheumatologist similar to Dr Mackie too, Had my 3 monthly appt today (2nd appt) and still no information given to me despite asking. In fact I just listen while he speaks into his dictaphone, I am more depressed after attending appt, thinking this time I will get info, help or assisstance but think he only sees a disease sitting in front of him and not a person with GCA who needs answers to at least sort some of the confusion I seem to have been in since last August
I am so sorry grandmother7, that sounds like a rotten experience, no wonder it depresses you. Where do you live? Perhaps someone on this forum could recommend a good rheumatologist. That's how I found Dr Mackie ( through our fount of wisdom PMRpro). It's an hour and a half drive from where I live but so worth it. I have learnt all I know about the management of PMR from this forum though. Stick with us! Best wishes Jane x
Hello Sheffieldjane, I live in Norfolk and thought I would speak to GP at appt after hospital visit. She has always been very helpful, but no luck there either. Just told me to be more assertive at consultant appts, not to leave until questions answered !!!!! Would still be sitting there ! Also to take family member with me (husband had accompanied me) and commented as we left "I dont think he likes women" . Hopefully if reducing prednisilone continues satisfactorily I will be able to remove myself from expecting any "support" from them. I agree with you this forum is so helpful, I too have had lots of help and advice, keeps us going ☺
Unfortunately, there are a lot of consultants of certain ethnic extractions and cultural backgrounds who convey the appearance of "not liking women" even if that is not the case. Since this is the NHS in the UK - they need calling on it and a complaint made if necessary. I will NOT accept being ignored by the doctor who is paid to manage my illness.
I know this is three years old...but for some reason it just came before me....and it really put a smile on my face..for you~! It is a whole new world when you have someone 'who sees your full picture' and someone you have faith in. It must have been so rough before!
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