I am so sorry for those of you who do not have a positive experience with your GP, since the start of this journey mine have been brilliant, immediate treatment and very responsive
Today’s appointment, face to face, we discussed how I was doing, sorted out a visit to the in house physio to decide which ‘pains’ were PMR and which were other issues, like my old shoulder break and the arthritis; discussed a DEXA scan, not happening as the rheumatologists don’t think it’s needed so discussed the usefulness of Aledronic Acid at this stage to help prevent osteoporosis - not taking it as yet, I’m not happy to add extra drugs into my regime, but using the calcium etc for now, revisit in a few months; happy with my slow tapering adjusting as circumstances dictate without having to go back up because of a flare; happy with the levels of exercise etc I am doing (walking for about an hour every day, Pilates once a week, osteopath every couple of weeks, training the dogs once or twice a week)
No pressure at all to try and get off the steroids quickly or do anything I am not comfortable with in relation to additional medication
I did ask her how many PMR patients she dealt with and she thinks she probably has 10 on her list, with more in the surgery.
Sensible doctor, educated in the issue and ready to listen to the patient
Good luck everyone, sensible GP’s are out there
Written by
Billiebobdog
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That's how it should be - there was one woman in my UK practice but I hadn't seen her, I saw the bloke who, nice as he was, hadn't a clue! But even she didn't come up to that because when you saw her, she was running so far behind there was no time to get any discussion.
OTOH - that is sort of treatment I get here from my rheumatologist. f2f, as long as I need and appropriate treatment ordered or provided by him there and then. Even in Covid times ...
I just feel so sad for those that just do not seem to be getting fair treatment, how can it be so very different from one doctors practise to another?
The information is all available, maybe we just have to be far more forceful in our advocacy for ourselves and keep banging on about how we want to be treated - not easy when the exhaustion is ever present
I think GP practices vary a lot anyway - and not all have this well set up a system. I bet they have different GPs with different emphases - so she gets more PMR patients for example. And when they see several with differing problems, they realise better that it isn't as simple as some think.
There is a TV series, GPs behind closed doors, and their set-up is brilliant. And so are the doctors running it.
Fingers crossed , we have a new GP at our surgery whom I saw face to face for my infection , not only did he not look like a deer in headlights when I began to tentatively talk about my issues in an educated manner , he even said , " You are a sensible person and know what you are doing so if you need to make a change or call me I'm happy with that ".
Hoping that I may finally have someone I can feel like I am working with and not against...Time will tell of course!
Just discussing that with the bereavement psychologist - how some of the doctors in the hospital still think they are special and need not be accountable. I listed the doctors I have close contacts with - all of them the type who treat us as equals. And it makes such a difference,
What is really interesting to me is the mis-diagnosed illnesses by gp's and other doctors! (Our GP was terrific after years of experience but then he retired at age 80!) My brother was told he had neutropenia/autoimmune type. Now suddenly he has a new doctor since he moved from California to Michigan and they say he has something entirely different which has similar symptoms called myelodysplastic syndrome. Now he might need a bone marrow transplant. At least in America we can see doctors, it seems, more frequently and easily than in other places, I think. One has to hope they have experience to recognize rare or unusual diseases.
It's fine here in northern Italy - I've had 4 specialist appointments in the last 5 months and all f2f. If I need to see the GP it's the same but she is always at the end of the phone - in person. Whether they always get it right or not is another thing, isn't it?
It was apparently the response from the hospital to the Gp’s request for a scan, basically don’t need a scan but that they should use the medication to mitigate the risk! As I said I declined when offered, if they want me to have more medication they will need to prove I actually need it
I suppose it is a bit difficult to get your GP to apply again. It surprises me the hospital said that. Did your GP apply direct to the Dexascan people or through a rheumatologist. Does the hospital have a Dexascanner?
I believe it was the response to the referral that was sent in by the GP
But in all honesty when I started this journey and looked on our Health authority website I really didn’t hold out much hope of ever getting there or seeing anyone anyway
Great you have a good gp. Unfortunately I am not so lucky. Spoke to practice yesterday asking if I was on list for extra vaccine as was on 15mg of prednisolone at time of 1st and 2nd vaccines.
Apparently they say I am not on the list as just because I am on steroids does not mean I am not immunocomprimised 😕😕.
The NHS website says that those on 20mg steroids at the time of vaccination are eligible for the extra shot. Many of us started on 15mg so do not get the 4th dose.
What a minefield. I have the emergency kit for testing and applying for the anti-viral, but no indication that I am entitled to a 4th dose. Left hand -right hand confusion reigns supreme!
I went to a walk in centre showed the doctor on duty I was on steroids and explained my dosage and he wrote on my records that the vaccination I was having that day was a 3rd dose and I would be informed by text when I should come in for a booster.
My treatment is GP led and like yours he has been great .
Just a thought re dexa scan . Here it is run by osteoscan and although I did get mine through the NHS ,when I looked on their site I saw they also did private .
The cost quoted was 150 pounds .
Had I of known this I would probably have gone through this route to get scanned quicker .
I am on Risedronate. ,First tried Teriparatide but had bad reaction .
I do have gastric issues so was very wary with Risedronate.
If I am honest and had I have known about it earlier , it would have been my option . Long story short by the time I got my scan I had a few fractures unfortunately.
Appreciate we are all different but my personal opinion . If you have concerns get the scan if you can 😊
My GP referred me for a DexaScan as soon as I mentioned I would like one. There was a wait of a few weeks, but no quibble about needing one as a baseline to compare with at a later date. It looks like West Yorkshire is a good place to be for things like this.
Pretty sure our health CCG doesn’t want to spend any money, just lucky with the GP
My GP is in special measures and I have no faith or trust in them. I know I am extremely lucky that I can afford self funded private care which I will continue with asI feel I have no option. Going private I saved a lot of time as my PMR was diagnosed quickly and my symptoms controlled. It certainly is a postcode lottery here in the UK with regard to medical treatment - don’t get old and no get ill😂
Yep, the good ones definitely do exist. I have a GP who sounds similar to yours Billiebobdog. I feel just so fortunate to have him helping me. Worth his weight in chocolate biscuits for sure…
Well done on finding a GP who will listen and understands PMR 😀 It is possible to have a DEXA scan privately if you so wished. I believe that the price varies from region to region. I think I’ve read on this forum people paying between £100 to £200. I was lucky to be able to have one arranged by my GP and then a follow up 2 years later.
You're very lucky Billiebobdog! Sadly, except for the senior partner - with whom it is impossible to get an appointment - all of my GPs have told me to ask the rheumatologist. Great, you only get to speak to them every 6 months. Hence the fact that I've now had to go privately and I've been told that I need TCZ...once I have his written report I shall try and get the NHS to pay via the GPs but I don't have a lot of faith. But I am glad that at least one surgery in the UK are on the ball.
My GP is excellent, too! Long conversation with him last week re staying on low dose steroids & tapering slower (his suggestions, not mine), & I could have seen him face to face if I’d wanted to. I baked our surgery some biscuits at Christmas to thank them, & yesterday received a handwritten thank you card from my doctor.
Wow that’s so good to hear. In the 5yrs since my diagnosis it’s neither been checked on nor mentioned. Even my in yearly blood tests it’s never included. My notes apparently show there’s no problem - how do they know ?!? It’s this site that answers my questions and gives support. Even the note on my pred box shows “to take as required”. I feel I’m in my own here when struggling with this nuisance disease ☹️
I also have a fab female GP - she listened to me (by phone), sent me for a blood test, then phoned 9am next day to say she understood how I felt, and told me about PMR.
Recently I asked her to refer me for a private DEXA - I just wanted to know my bones - but she said she was able to get that on the NHS. It’s not been a long wait - I’m going next week.
I don’t see her face to face but I do already know her - she saved my life by sending me for a scan when many GPs would not have, and it turned out I had breast cancer - I was in my 40s. I was astonished. It would have developed into secondary cancer if I’d waited until the routine scans.
So, lucky me, but it is dismaying to hear how others of us have a different story.
Needed to see GP this week and had a word with the receptionist who is lovely. 15 minutes later my GP rang me to ask if I would call in to see him within the next 30 minutes which I did (I haven't seen him for over 2 years).
I can only assume GP is either beginning to see the light or I'm more ill than I think I am!!
Oh dear!!!!! Is he at least a decent doctor? My gynae/obs guy in Germany was a tall blond Adonis - and such a lovely person and good doctor too! Made you feel better just walking in to see him His wife was on the reception desk - can't imagine why
No - he's rubbish!! Did get original PMR diagnosis right in 2017 but I think he must have peaked then. Think he's pretty near retirement age though so I'm hoping he goes before I do!
I too have a wonderful GP, but currently under supervision of a rheumy due to an attempt at a new medication to taper my pred dose lower.
I would recommend a Dexascan scan in the early days to serve as a baseline for comparison later down the line. Strange how they suggest AA before they do a bone scan??
All the best moving forward, sounds like you’re in good hands.
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His wife was on the reception desk - can't imagine why 
feeling out of my depth
Enlightened GP practice!
Six years into PMR. What should my GP be testing me for?
Now my teeth are falling out:)
Osteopenia - should I persuade my GP not to prescribe AA?
