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Coming to Terms with PMR

  1. I have recently been diagnosed with PMR (January 2012) I am a 47 year old female,and although it was a shock because I had no idea that the condition even existed I found it a relief to actually have a diagnosis as I was beginning to think I was going mad!!!

    I was started on 20mg of steroids daily and I had to try and reduce these over a few weeks as soon as I did this,whammmm.....all the pain started creeping back in and life was neginning to become unbearable again. I was then put back up to the initial dose and I am just about to start on reduction again, something I am not looking forward to.

    I find it very difficult to come to terms with due to my total lack of understanding of the condition and I really dont know what lies ahead but then again who does in life.

    My whole lifestyle has been changed,I have had to attend Tribunals to determine that I have Limited Capability for Work and although I would far rather be working full time I could honestly say that I would never be able to do this and cope with this condition.

    I just wonder if anyone else has any advice with working and dealing wth this condition

  2. Hi Jackie,

    You will find lots of discussions in these forums about PMR and I expect some of our regular contributors will be along to reply. You may also wish to have a look at http://pmrandgca.forumup.co.uk/.

    Regards,

    Alan

  3. jackie65

    Sorry to hear that you have been diagnosed with PMR and yes it can be frightening when you are starting to deal with an illness which is brand new to you. Unfortunately at this time there is no known cause or cure, but research has been stepped up and we live in hope.

    You can go to http://pmr-gca-northeast.org.uk and you will find a wealth of information on that site. There is also a DVD made by patients specifically for new patients as we found when first diagnosed we were floundering. Alan has already given you an email address to use.

    Do remember one thing, whilst PMR is life changing, it is not life threatening and you will learn to cope with the ups and downs as you travel along a road you never expected to walk.

    If you think of the PMR like a forest fire the pred damps the flames down, reduce too quickly and the flames flare up again and you have to go back to where you where to dampen it down again.

    There are various methods of doing this and some of them are on the website and forum.

    More will be along to help you, you are not alone.

    Keep coming back and asking the questions.

  4. Hi Jackie

    You will find loads of answers to your questions and some people who have eventually returned to work over on the forum address that Alan has given you. Plus,MrsK has directed you to another site with lots of helpful professional information and advice, including other people's stories of their journeys with PMR.

    As you are finding, it can be difficult reducing from the initial doses whilst the inflammation is still not completely under control, and many of us have found success in reducing more slowly and by smaller amounts. Plus if you are a person who had raised inflammatory blood test markers at the outset, they should be repeated and used as a guide as to whether or not to reduce each time.

    Another important factor is not to overdo things on a good day so as not to stress the body whilst the steroids are trying to do their job.

    Do hope you start to feel better soon and will then continue through with a smooth journey to recovery.

    MrsO

  5. Jackie - you will find that once the pred is sorted you will feel quite a bit better but your aim then is to reduce in small steps until you find the lowest dose that controls your symptoms. That doesn't mean reducing the pred to zero - it hasn't cured the PMR and if the reduction is too fast or too far the symptoms will return. This does seem to be something a lot of doctors struggle with. You are probably looking at a couple of years at least before being down to almost nothing - and that is if you are lucky and things go smoothly.

    Sorry to sound so downhearted about it - but there is no point thinking this will be out of the way in a year and you will be back to normal. Unfortunately too many doctors won't tell their patients that basic fact as they are worried it will depress them. Trouble is - when they are not off pred in the time the doctor said initially the patient thinks they have failed in some way and that is sometimes even worse.

    Do visit the other sites where you find loads of info to help you meet your doctor with a bag-full of knowledge - and as MrsK keeps reminding us all: Knowledge is Power! When you know more than your doctor about PMR you can argue from a position of strength about treatment.

    Eileen

  6. hi jackie i know you dont want to be here but once you are on the road with control and knowledge it will give you confidence, look at the other websites but come back to us with your ???? as you go along and there will be lplenty ,dont always assume gps know all there is to know about pmr they now the basics but many have fixations about reducing streoids as as soon as possible , but i know at some cost you have to reduce slowly and according to how you feel your esr results are only a guide ,slowly can sometimes even mean 0.5mg at a time ,i am on 10mg and never reduce more than 1mg at a time and i give my body at least a month at the dose before even considering going lower .if then i have a problem i stay on that dose until things settle you will get to know the signs this a case of you managing it rather than it managing you . so get reading yes it is scarey but you will not do anything that someone on the websites has not done before and you can learn from their experiances will speak to you after weekend off to london to a show etc !! carolk

    1

  7. I would just like to say thank you to everyone who has responded to my recent posting.I have found great support in the postings that i have received.

    I still find days difficult and I still go on. I am at present doing 12.5hrs per week as a school dinner lady! I love it! It may be killing me in pain!!!!!! and far from my previous job but it gives me something to get up for.

    I ache, I moan and i am not who i should be but i breathe........ and i enjoy every pain free minute I have cos i do not know how long it will last

  8. Having just read all the replies that I have received trough my postings with my partner (who up to now had no idea of my feelings and anxiety) I have just cried and cried>>>>> is this because I am telling lies to him as to what I am actually feeling! or am I coming to terms to what is going on and he has been aware of it for wee while due to my wellllllllll pain in the arse attitude to be honest!!!!!

    Isnt life shit! You could win the lottery but i chose to be affected with PMR and consequently affect others in my life.

    I do appreciate any help that I receive from fellow pmr sufferers.

  9. just back from london will reply tomorrow dont be fearfull we will all help you carolk

  10. I was diagnosed 2.5 years ago just as I was about to give up work. I've learnt, that not only did I not know much about PMR, but neither did a large part of the medical profession.

    It's a bit scary, but once you learn to live with it, you can make big inroads to recovery. The three main points of advice I can give is:

    1) Learn not to over do things, if you need to rest you should.

    2) Steroids help but be prepared for the side effects.

    3) Flare ups (as they are known) are very disheartening but in my case at least, they are never as bad as the first attack.

    I'm sure partners can be supportive (if you have one) but only fellow sufferers can truly understand. I met some fellow sufferers recently as part of a group. It was a big help

  11. hi i am just back from a theatre weekend in london a year ago i could not get to the local shop so jackie there is light at the end of the tunnel although i have no ilusions that i have a way to go ,i now manage my condition rather than it managing me this entails resting when needed reducing the steroids slowly and accepting that i need help from my nearest and dearest .the tears and mood swings will settle its the steroids as the body gets used to them and you start to reduce they will go ,that does not mean you wont cry at lassie come home etc but it will be less upsetting as you gradually come to terms with this conditon .please take your steroids in one dose pref with food and before 8am if poss , take your adcal after lunch and evening meal ,if you have any other meds let us know and also which blood ests you have and when then we can comment .if you need help from people in the same situation as yourself re work and have not visited the other website i can ask them to speak to you on this site just let me know thinking of you carolk

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