Thank you to DorsetLady, polkadotcom, and markbenjamin57 for replying to my post so late last night. I am feeling !!!!!!!!!???

I have only very recently retired and my professional background is as a nurse but for the past 30 years I have worked as a health visitor so my clinical skills and knowledge are extremely out of date. I had heard of PMR but knew nothing about it. When the rheumatologist gave this crippling pain I was experiencing a name I was relieved and when he said there is treatment even more so. Like many of us on this journey pain makes us vulnerable and fragile and I didn't ask any questions and even if I had had the wherewithal I am not sure I would have asked the right things anyway. After 2 days on the 30 mgs of course I felt better but because I had no real knowledge I naively thought that is the way I should always feel on the steroids. Following the regime I was given and moving on 3 1/2 weeks and now on 15mgs with some pain I again didn't ask questions and slavishly followed the advice of the GP and went back up to 30 mgs. It was only the following day I thought, 'this isn't right', and started reading avidly so for the past week every spare moment has been spent devouring books, documents and every bit of research data I can find. I feel more knowledgeable but also trapped, enormously angry and frightened. I feel angry with the GP for his glib response of go back to original dose but mostly angry with myself for not taking control and making myself more aware earlier. I am also sympathetic towards the GP as my health visiting office was based in a surgery and I am fully aware of the pressures in the NHS and the practice at which I am registered is 2 full-time GP's down and can't recruit. However that does not make his response right. Having done all this reading I have every confidence the accumulated knowledge and experience of some of the members of this forum is far superior to many medics and I suspect I now know more than the GP. I am unable to think intellectually at the moment and find my responses are all emotional and I feel enormously let down again partly by myself. I so wish I had not gone back up to 30 but I am where I am and I intend to try and take the control in my hands. I don't yet have a way forward but I really am grateful that you responded so quickly and I will be on the ball with dose and think my best bet is to build up a relationship with my soon to be new best friend my village pharmacist.

At some time in the future I hope I will be able to respond in a clear knowledgeable and practical way to others on the forum when they are in need as you have done for me. Again enormous thanks. Judyliz

9 Replies

  • Hi JudyLiz

    Don't worry - being on 30mg isn't a terrible place to be as it means you have somewhere to reduce from. I've found it easier to reduce from higher doses than those nearer 15mg and the experience gives you more information about your own body's responses.

    I think feeling angry and seeking a sense of how to be in control are very normal reactions to this condition. I suspect we've all been through that at least a few times here. Sometimes having a clinical background makes that a little bit harder.

    Good luck. Hope your new plan goes well.

  • Thank you

  • Hi Judiliz

    Don't blame your GP too much - lots of them know less than us, as you said yourself you'd never heard of PMR in your medical capacity. Unfortunately you are not alone in that. Although maybe he should have checked, but as always - time is of the essence on these things.

    As I said in previous post- the more you learn the more confident you will be on dealing with PMR, and there's always someone on this forum who will offer advice. Good luck

  • Totally agree being an ex nurse myself I find is a blessing and a curse. Keep reading and understanding, write down any questions ready to discuss with your GP. I started on 60 mgs of Pred a year ago now on 10mgs and for me the lower drops have been tougher. Good luck Maxine

  • I have often found that information gathering is not always at the forefront when you're firefighting and feeling vulnerable. Of course we expect at those times that our health professionals will fill those shoes for us. And of course a GP will not know everything about every disease placed in front of him/her.

    In the 2 weeks (or even less perhaps) I have been a member here, with all the available information and feeling ready to learn about my disease, I now know what I am up against and where to find more info and help if I need it.

    I was lucky to discover my doctor here in France seems to have a good knowledge of the disease and has the space and time to allow me a thorough consultation.

    You could let yourself off the hook now and use the knowledge and support here to move you through your PMR journey more gently.

  • Thank you that is a very sensible approach and as I am aware my own judgement is not the best at the moment I will try and be more relaxed and gentle.

    The pictures of Ida are delightful. Thank you for sharing them with me. X

  • Hi Judyliz

    Your post spoke to me succinctly.

    It evoked a lot of emotion on all fronts which is hugely understandable as you come to terms with this most unwelcome intruder into your life, especially having now retired and also from a health profession prospective and the not knowing the width, depth and/or entire circumference of what this life changing disease now entails for you.

    I identified much of my earlier self (PMR diagnosed 18+ months ago) with your post. It is that expectation we place on ourselves in so many areas.

    I am now juggling other difficulties and challenges on this journey but one essential and vital proponent in which I have needed to learn is to "let go" and not sweat the "small stuff" with the expectations that I have always placed upon myself.

    Another words, see this journey as a learning curve despite the seriousness of it and know we will survive and we will all rally together and support one another on this website.

    There is nothing in Auckland, NZ where I live and I am more than indebted to those who have supported me here.

    Abundant blessings are sent your way in the meantime - go gently.

  • Visit this website and click on the map, you might find a support group near you.

  • Late to the party - I'm on holiday!

    However - does it make you feel any better if I tell you the latest guidelines suggest a starting dose of somewhere in the range 12.5-25mg? And that it shouldn't be above 30mg? So you aren't so far off. If you have only been on the 30mg for a few days you can drop quite quickly to where you were OK before.

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