So much to learn

I am newly, ie. 5 months ago diagnosed. I live in England, and retired as a doctor 4 years ago, but my speciality was nothing to do with rheumatology about which I know little. Mine seemed to come on very suddenly over a few days after Xmas, but now I wonder whether I had been getting intermittent symptoms for two years. My GP made an immediate diagnosis pending ESR result and when that was raised started me on 15pred. She gave me a hand out which was helpful and stressed working in collaboration. I responded well and got dose down to 10 but relapsed within a week.

I had just discovered this site which I find really helpful. British NHS is great but not easy to get a quick appointment unless seriously ill. Also I don't think they have time to go into all the issues this site does. Thanks everyone

20 Replies

oldestnewest
  • Patsy, welcome to the forum but I'm sorry to hear you've been diagnosed with PMR. Read as much as you can on this forum and also the BSR Guidelines for the Management of PMR.

    At this stage, a couple of the most important things to learn is 1) to taper the steroids very slowly (not in large chunks but by no more than 10% at a time) and 2) to take things easy, learning how to pace yourself each day. Many of us have learnt the hard way that if we overdo things on any one day (easy when we feel better) the pain will come back to bite on the next.

    You will probably have been prescribed a calcium plus Vit D pill to take each day - these should be taken a few hours apart from the steroids.

    If you haven't had a Vit D blood test, then do request one as any deficiency can lead to pain in similar areas to those of PMR. If a deficiency is found, then the usual Vit D contained in the calcium pill will not be sufficient to return levels to normal. A higher dose supplement of Vit D3 is needed for 3 months followed by a smaller maintenance dose thereafter.

    There is an excellent book available which is especially helpful for new sufferers: 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide by Dr Kate Gilbert. It is available direct from PMRGCAuk at PMRGCAuk.com or from Amazon, with all royalties being donated to the Charity.

    There are various support groups around the country and if you look at the above-mentioned website you will be able to see if there is one in your area.

    I do hope you are now on an even keel and feeling better since the relapse you mentioned.

  • Many thanks ,I will certainly get the book. I am almost completely better on 15 prod. for nearly three weeks, and reduced to 14 today. This time I will be cautious about reduction, though I would so love to be off the preds and consequent biphosphates and lansoprazole and calcium. Although a bit of moon face is good I don't know how much rounder it will go. Patsy 69

  • Hi Patsy,

    Celtic has given you very good advice.

    The most important thing to take on board I think is - you cannot rush PMR nor the reductions in Pred - as you have already found out, unfortunately.

    PMR is not like many conditions, it does not have a specific timescale, it takes as long as it takes, and that sometimes is the most difficult aspect for patients to come to terms with, especially in this age of instant results.

    In lots of illnesses there are certain things that as a patient you can do to prevent or limit the effects. There is little you can do with PMR, apart from take gentle (not too strenuous, the muscles don't like that) exercise, rest, learn to pace yourself - not doing too one day because you feel great, or you'll find the next day you're wiped out! That's difficult if you're used to being a multi-tasking individual (male or female).

    You don't stop have to stop enjoying life, just do it at a gentler pace! And let others do more for you, even if it's usually the other way round.

    Take care.

  • Well put DL, I'm sure that to survive PMR (if not GCA - much more serious), we have to change our mind-sets / self-concepts as much as our physical lifestyle.

  • It certainly helps!

  • I find that this site is more aware of problems and helpful ways to cope than any thing else. I do think it is a psychological journey and I am now more aware that rushing prednisolone reduction is not always best. One possible advantage is that my face filling out has , lthink ,decreased wrinkles. I would definitely prefer not to need it though patsy 69

  • Yes Patsy, I think we'd all agree with that. It certainly does smooth out/fill in the wrinkles, but with the other side effects it's a high price to pay!

    But one consolation - you do look better than someone who's been Botoxed!

    Keep smiling - at least you can.

  • Amazing that you are in Canada and I am in England and we can share experiences in this way. I do hope that the terrible fires are abating, it has slipped out of our headlines rather. The scale is incomprehensible to us patsy69

  • Patsy - think you've got your 'Pred head' on! I'm not in Canada - did you mean to send this to me, or someone else! Don't worry - happens to us all.

  • Sorry I obviously misremembered from a few days ago patsy 69

  • No probs! As you say you can talk to people from around the world, so no wonder we get mixed up ! Blame the tablets - everybody else does. Take care

  • Welcome from me too!

    I had niggles for some time and then finally had a minor meltdown - it wasn't recognised and my blood markers were normal so I had about 5 years of moderate problems. Then I had a major meltdown and after several months of research presented the diagnosis to the GP: "Could it be?"

    I have just been at a rheumy conference - at the PMR breakout group I was the patient rep for at least half the healthcare professionals knew nothing about PMR (obviously hadn't done the homework they had been sent...). The few rheumies present THOUGHT they knew about it - but all too often their version really doesn't match the patients' experience!

  • Shocking to hear this PMRpro, especially in the digital age where information and research are so quickly and easily accessible to all!

  • They'd had it all provided - as a dropbox before the conference and on a stick with their goody bag. There was NO excuse other than lack of time - and that's what a 10 hour flight is for!

  • Hi there - which conference were you at? Was it Zurich?

  • No - OMERACT in Whistler. Outcomes measurement in rheumatic diseases...

  • Problem is, some, not all I hasten to add, think they know it all already! And what do we the patient, a mere mortal know.

    Told you I'd be trouble after today.

  • Join the club...

  • Patsy, sorry to hear of your diagnosis, but you have come to the right site. My GP clearly hadn't ever heard of PMR as I was left to the point of almost complete immobility for nearly 3 months with nothing more than ibuprofen as company. By the time I attended my rheumys appointment I honestly believed I was dying I was in so much pain. But that was 2.5 years ago and I am doing very well. My rheumy had me follow the Bristol PMR plan, although I only stayed on 10mgs for 6 months as opposed to the recommended 1 year. I suffered a flare attempting to reduce from 9-8mgs and it was from PMR pro that I discovered the dead slow and almost stop method of reduction. I am sort of following that now and have successfully reduced to 5.5mgs, I start my reduction from 5.5-5mgs next Saturday, so fingers crossed for that.

    The good thing about this site is that many of us share our PMR experiences and of course some experiences that turn out to be not PMR related! but it means that the twinge, the pain, the rash, the bump that worries us is often being experienced by others and that puts our mind at rest with the proviso to visit our gp's if we're really worried.

    As a Dr you will know that this recovery journey will be a long one for many of us, and that includes you now, and that, Contrary to some of our clinicians wishes, the dose of preds must fit the level of inflamation and not the other way round. So slowly, slowly does it.

    I have my life back, and now I'm on the lower doses, am exercising more and dieting and have lost 1 of the 3 stone I put on within the first few months. I feel happier and at 55years old believe I have a great and purposeful future unlike 2.5 years ago when I truely believed I was for the incinerator!

    I wish you all the best, regards, tina

  • Ii remember when I was at the start of this illness the feeling that I would no longer be able to live in our big old house and garden because I would not be able to cope. I even worried that I. would need caregivers. Thankfully the preds. Dramatically reduced symptoms. Patsy 69

You may also like...