I was diagnosed with PMR in March 2020 after I !! requested a blood test because I was experiencing such awful pain in both buttocks and shoulders and had been advised to exercise more. During those 19 months I have been treated by 2 GPS who have since retired and as I am tapering down to my personal best of 7mg I anticipate that the new GP will not be as sympathetic as the previous GPs.
I have never been referred to a rheumatologist and frankly I am a bit worried how my traditional 8 mg milestone phone consultation will go. I frankly find these sessions very unsettling and my usual articulacy disappears.
Any advice please if the new GP tells me to carry on tapering and take a blood test because from your previous comments I understand a blood test will not be conclusive while on 8 mg.
Many thanks for your sage advice.
Written by
AnniesRyder5
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I honestly think that telling a person in pain to exercise more is an example of micro aggression. If that was the two GP’s you’ve had, then a new one could hardly be worse. It is quite usual for PMR to be managed at primary care level. Start with the new one the way you mean to carry on. You are pretty knowledgeable now and can assertively explain that you are confidently able to manage your own taper with the help of your support group that has all the latest knowledge and experience to share, including research papers. Note down a few crib notes for yourself to keep on track. I lose articulation too and get a kind of can’t be bothered to explain feeling, almost. The above does seem to work for me though, I do know more about my conditions than they do and am often able to effectively demonstrate that these days. GPs are so overwhelmed now that I think they welcome patients being able to manage by themselves with a GP in the background for big issues arising. You’ve got this forum for the millions of little things that crop up. Try it. I have become quite terrifying. 😂
Thank you Jane for your good adviceI must admit though that just getting through the initial receptionist stage is frustrating enough to be then triaged and just maybe get a GP
Personally I'd wait until I get to that bridge before crossing it! You never know - the new one may well be one of the really good ones. Just know why you are still at 8mg - have you had flares on the way although being at 8mg after 18 months isn't bad at all. Half of patients take just under18 months to get to 5mg - that means the other half took longer.
I too was told to get more exercise. I was prescribed diazepam to relax my muscles (it gave me sleep apnoea so I soon stopped it, and it didn't work anyway) and told to go and get a massage! I too had to request a blood test in order to get a diagnosis. Never seen the GP, only telephone consultations. She put me on 15mg pred but wanted to put it up to 60mg when I said my headache hadn't quite gone (I had what I thought was an infection, swollen glands, sore throat, ears and headache). I insisted on further tests first so I spent the next day at the hospital being tested. Now awaiting biopsy result and on 40mg due to no eye problems, and at least I have a referral to a rheumatologist. I think these days you have to research your own health conditions, and I agree, GPs seem to appreciate it when you do. I diagnosed my husband's lupus after he spent 6 months having various tests to be told they didn't know what was wrong with him. He asked for a lupus blood test which was positive. We have both had to wait 3 weeks each time we book a GP appointment. Hubby has been referred to a rheumatologist but has to wait over a year while they clear the backlog. Meanwhile no treatment has been offered. Some of Sajid David's comments on TV this morning had me seething!! Sorry, I'll get off my soapbox now.
Ditto!!!! But I don't imagine for a moment HE needs to even make the phone call to try to see a doctor!I was discussing this with my GP here yesterday - she was amazed that GPs in the UK weren't seeing patient f2f. Same with dentists. For 4 weeks it was dental emergencies and by appointment for the GP (normally turn up and wait) and then it slowly went back to more normal and now it is business as usual. Though to be fair - we have fewer than 3000 cases a day compared with the UK's 30,000 plus, 40,000 yesterday I think.
We were lucky with our dentist. They made a big effort to carry on as normal. Just as well, because I had a huge abscess during lockdown 2! Now she's made herself ill with overwork....
My daughter's dentist did her a favour - despite being private, she couldn't get a appointment and somehow got in contact with a Chinese girl just round the corner - no wait, superb job and on the NHS!Much the same happened to me years ago, mid-late1990s was it?, when there was all the fuss about registering with a dentist to get NHS treatment in future. My dentist made a private offer OH was all ready to pay and I said not likely! I rang the CCG who told me the nearest NHS dentist was miles away but my daughter's then boyfriend mentioned his and I rang them to ask. No bother, £5 to sign on, when would you like an appointment! They were in a severely deprived area, no-one would be able to pay private so they didn't even think of it. One of them worked at the dental hospital part time but wanted to "keep his hand in" - he really was superb!
Thank you for sharing your so similar experience. I have researched as much technical stuff as I can understand. Just last week I contacted the surgery about a very heavy cold to be told by the nurse that unless i have green or bloody phlegm I should just get on with it - whereas the NHS web site states PMR patients should be prescribed antibiotics. It’s a fortnight now with this cough and cold and both sides of my ribs hurt !Apologies for the miserable post but that’s how I feel🥴
For nearly four years My GPs have advised me on PMR - usually by phone now. However, just as I get used to dealing with one particular person, they change. I have every confidence in them but did suggest, a year ago, that I be referred to a Rheumatologist just to get a confirmation that I actually had PMR, as I had never had any noticeable flare ups. This was either an indication to me that my GPs were getting dosages right all the time or I had not actually got PMR but something else with similar symptoms.The Rheumatologist confirmed PMR. I am happy to follow my GPs advice but I now end up making a lot more suggestions about my treatment, having read all the useful information found here on this site.
I have just had my first major flare up.
A new GP can sometimes bring new, and useful, information about PMR to their new colleagues at a Surgery. Do not worry. 🙂
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