When I was newly diagnosed the experienced people on this sitee recommended this Rheumatologist in my area. Apparently she has a special interest in PMR and GCA and is running a research project. An appointment has come through for me in the new year and I want to make the most of it. I have seen a Rheumatologist in Sheffield who just suggested a tapering system to get me off Prednisalone.
Can anyone advise me on how to make the best use of this referral?
I am hoping for greater insights into my condition and perhaps some more definitive tests. Above all I want to see someone who is knowledgeable and especially interested in this condition.
Written by
SheffieldJane
To view profiles and participate in discussions please or .
I think I would keep a list of current symptoms or issues you've been facing as well as a list of questions. Jot things down on a pad over the next few days as they occur to you. I try to remember to email my questions a day or two prior to my appointment so that the doctor knows what's on my mind and is prepared to answer. I bring a copy with me as well so I remember what I wanted to talk about. It's worked pretty well for me. Another thought - would it be helpful to get your blood work done ahead of time so you have current numbers to talk about? Bring other results with you or have them sent ahead of time so the doctor can see how you're doing over time. Hope this helps and good luck with your appointment
It often isn't as easy as that in the UK system (I'm assuming you are in the USA?) Most GPs are not familiar with the sort of blood work a rheumy would do so it makes more sense to wait until you get to the hospital and see what the specialist wants to look at. And emailing before you have seen a doctor won't help a lot either - in the UK the doctors are in a hospital system, not in private offices.
You're right. I am in the USA and went directly from a physiatrist to a rhuemetologist. Mine is part of a big hospital but they have an email system for each doctor for questions and renewing prescriptions and such. The nurse checks it and either gets back to you or hands it off to the doctor. I think it's relatively new here but it's great because my blood draw results are posted and appointment reminders etc. my only issue is it that my primary is on a different system because they are connected with a more local group so results need to be faxed or mailed if she wants them. I forget that medical administration is different in different countries!
I live in northern Italy - they are in the process of digitalising it all - but even then, while my GP can see everything from the hospital, the hospital can only see what she adds to a referral for privacy reasons. And things like my dexascan results come to me - I have to take them to the GP myself as it is from a hospital out of area.
There are rheumatologists in the UK who will respond to emails or who assign you a rheumy specialist nurse but they are both rare birds!
You'll definitely get that in that department SJ. It will almost certainly be similar to your original first appointment - history and physical examination. Make a bullet list of your symptoms and another of your questions - don't make it too complicated though. If you see Dr Mackie she will order the tests she wants - and if you are to be offered the chance to be included in the study you will get the info and be sent for a range of tests for the study which wouldn't always be done.
You may see others in her group - but she will always be in the background, especially with the study.
Thank you both for responding. I'm fairly sure that you gave me this contact PMRpro, in the bewildering early days, thank you for that. It will be great to have someone who is genuinely interested in this queer condition. I am not great at explaining about this condition, I forget time spans, doses of Pred. Tests I've had. I wish I was professional and clear like you. I need to tell her what she needs to hear, not what's on top for me. Thank again. I'll let people know how it goes.
It was! Keep a diary and sit down soon and write out what you can remember for your own benefit. Looking at your posts on the forum will also help you do that. Then pick the main points to offer the doctor you see, not too many, that just confuses the issue. And relax - they won't eat you!
Just to let you know that I am part of Dr. Mackie's study group, I think I may be slightly different to you in as much as it was essential I wasn't on pred before the study started. As part of the study, I have had loads of bloods taken, some I will never know the results of, some are for my records, I have also had scans of arteries, etc. I was also asked if I would participate in a study into the effects of steroids on the muscles, and as such have had muscle strength tests, an MRI scan, and a muscle biopsy.
Just from my experience at Otley hospital, they will probably take BP, weight, height and bloods. You will then get a chance to discuss your issues with Dr. Mackie, so as PMRpro says jot down your main points for discussion and don't worry if you forget something you can always e-mail Dr. Mackie's secretary later.
Dr Mackie is a lovely person and so enthusiastic and knowledgeable about her subject. Wharfedale (Otley) hospital is quite a small hospital and very friendly, plus the car parking isn't expensive and you only pay at a machine on your way out of the hospital, so you don't have the worry as to how long to park.
When is your appointment, as I think I will be having to go to Otley myself in the New Year, although I do have one next week at Chapel Allerton hospital, which I think may be part of the study as I believe Dr. Mackie's clinics are finishing at CA.
Any other information I can give please let me know.
Bless you Primrose2, that is all very useful reassuring information. I get tired of being dismissed by the NHS as an older woman with various 'unsexy' conditions'. It would be nice to feel valued and have someone take a proper interest in diseases that rob us of our quality of life. I provide essential childcare for a doctor and university manager, I did voluntary work with the victims of domestic violence and the victims of other serious crimes for years up until PMR hit. We make a massive contribution! End of rant. Sorry and thank you so much. Just seeing a Rheumatologist who is interested and knowledgeable about GCA and PMR will give me a massive boost. I may have more questions when I've seen her. I may also be being unfair to the lovely young doctor who diagnosed me and the charming young Rheumatologist with whom I traded stories about my grandson with stories of his ( same age) son. I'm just being a grumpy old woman today.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Ugh rheumatology visit.
South Tyneside Rheumatology
Satisfactory Rheumatology Appointment 
Post Rheumatology Appointment 
Dr Sarah Mackie and The Target Consortium paper:
