Hi, I’m newly diagnosed with PMR and really grateful for the advice & support in this group. I am (well was) a very fit & healthy 56 year old. About 12 weeks ago I became quite unwell & my GP initially diagnosed burn out but wanted to do some blood tests as well. My blood tests came back with high inflammatory markers & due to all my other symptoms he diagnosed PMR & prescribed Pred. Reading everyone’s posts on here I feel very grateful that my GP recognised the condition & treated me quickly. He made a referral to rheumatology for me & my appointment is on Friday. As all of this is new to me can you tell me what I should expect from this initial rheumatology appointment & what sort of questions should I be asking when I’m there?
Thank you for your support.
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dancer2022
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You may have a physical examination but the rheumatologist may just ask about your symptoms and look at your blood test results.
I think that you should be asking:
• how you will be tapering down the Pred
• whether you should be taking anything alongside the Pred (e.g. Calcium and Vitamin D, Omeprazole)
• whether you will be having PET or DEXA scans (the former to aid / confirm diagnosis and the latter to look at bone strength)
You haven’t said how much relief, if any, you have got from the Pred. If you haven’t had a lot of relief from it then there may be a discussion about dosage of Pred and the possibility of an alternative diagnosis.
Thank you, I’ll add the questions to my list I’m taking with me.
The relief of my symptoms was almost instantaneous when I started on Pred. Most of the muscle pain has been relived & my tiredness reduced considerably. I started on 30mg for a week & now am on 20mg.
You will get a physical examination looking at where your pain is and range of motion - as well as a clinical history being taken. I'd suggest you write it down and get your thoughts clear before going. You may be sent for blood tests and possibly x-rays, I was.
I was booked to return after 6 weeks to discuss the diagnosis - and that was when it went a bit pear-shaped when I was sent in to a different doctor (a GP, not specialist) who repeated the exam and clinical history and then admitted he hadn't a clue. Waste of his and my time as he then fetched the boss who I had seen at the previous appointment! He had given me a 6 week taper of pred to get me through a business trip to the USA - but despite textbook symptoms and response to pred he didn't think it was PMR! He thought it was an inflammatory arthritis - still no sign of that 13 years on. Nor the osteoarthritis another previous rheumy had "diagnosed" on "feel".
I would suggest not being too proactive at first - assess what sort of doctor you have got. Some get very irate at patients who ask questions or want to tell their story. Others share the process with the patient right from the start. Hope you have one of those!
The nurse runs blood pressure and urine tests before the rheumatologist sees you on first time patients here so be ready to wee if necessary.
I was asked questions about the the health of my family. I had to do various exercises and had my body manipulated quite a bit. I was sent for X-rays amd blood tests. I had a shoulder ultrasound at a different location a few weeks later.
My care is being provided by the rheumatologist. I was never diagnosed by the GP who just referred me. I did talk to the GP a few months later about whether I should go on Methotrexate.
My rheumatologist and the rheumatology nurse have discussed things with me and the former has replied to two emails which I sent her asking various questions.
Your PMR might be managed by the rheumatologist or you might be referred back to the GP for management.
Might depend on which country you are in. I'm in Oz and the GP sent me for XRays and blood tests then referred me to a rheumy. I've only seen her since, at first at each reduction in pred then six monthly. Finally got to zero pred Jan 22 after four and a half years with methotextrate added after 18 months. Have chosen to reduce that myself. Not sure if rheumy thinks I have rheumatoid arthritis as well. Good luck with this journey. I was so relieved with the reduction in pain and the increased ability to move, I rejoiced at a diagnosis that said it didn't damage joints and should eventually go into remission.
I’ve looked at your profile but can’t see your starting dose (the range 15 to 20mg is usual), and did you get relief within a day or two? From my experience I responded fairly rapidly from a starting dose of 15mg, tapering to 12.5, then 10 over a two month period (as directed by rheumatology). But the pain returned, although not as severe, when I reduced to 10mg, but 11mg got me comfortable.
Be aware of potential flares and talk about management if this occurs. Is the rheumatologist comfortable for you to manage the situation by taking extra Pred (I bet not). Try and build up a war chest of Pred just in case; most of us do that.
As you can readily see, your appointment can go in many directions. I was diagnosed by a Nurse Practitioner, after failed attempts of GP's. The referral to a Rheumatologist four years later was a disaster.
Best advice from me is read the info on the links provided by DL above and go to the appointment armed with what you've learned and with an open mind. You are your best patient advocate.
Welcome. Every person”s journey is different and to some extent so can every day be different. For me the diagnosis at 56 started a new me. Apprehensive and entering an unknown world was at best scary. I had never been ill or reliant on medication and boy did it take some time to get my head around it. I joined SlimmingWorld as I really couldn’t afford to put on more weight with steroids Then joined a health club, started with swimming and then moved onto yoga. I was diagnosed in January 2022, although had symptoms from about October 2021 (but just thought I had slept awkwardly). I have managed to reduce to 2 mg and lose 3 stone in weight. I certainly feel as if my journey is moving in the right direction. But am not complacent. Just taking one day at a time and grateful for this wonderful group. Good luck with your journey. You will be well supported here.
thank you so much for your response. I’d never taken a tablet for anything in my life until now & my mum had to stand over me to make sure I took my first dose of Pred!! I have always been very fit, a runner in earlier years & now a competitive ballroom dancer, so I have been used to coping with muscle aches & pains so this has come as a complete shock to me & as you say it’s taking a lot of getting my head round. I’m very grateful to have found this group.
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