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PMR

  1. after blood tests my Doctor says I have P.M.R.He has given me Prednisolone for 12 days. Starting with 30mg aday down to 5mg for the last 2 days. I work 12 hour shifts in a shop and on my feet most of the time but my Doctor who doesnt seem to be simpathetic seems to think I will be O.K to go back to work in 2 weeks and has signed me off work for the 2 weeks. The way I am feeling now and from what I have read, is this really possible?

  2. Dottie

    dottie, go to P on the Condtions and then scroll down to Polymyalgia Rheumatica. You will find a wealth of information under that heading specifically for PMR.

    Also use the seach by keyword or term and type in PMR & GCA Support Groups and this will take you to the list of support groups on this site and give you the link to PMR&GCA UK North East Support website and also to a forum called pmrandgcaforum up uk.

    I would put the website address in, put it may get blocked and delay this answer. Your GP seems as though he has no concept of PMR and you need advice.

    Alternatively go to http://www.pmr-gca-northeast.org.uk and read all about it.

    Emis Moderator comment: I changed my mind and copied MrsK's answer in to here and deleted the other duplicate thread. Hope this is ok

  3. Dottie

    If your Dr is correct in his diagnosis of PMR and treatment, you should have relief of your symptoms in a day or two, and this fast resolution of the pain can generally confirm the diagnosis.

    BUT, if the above proves to be the case and you follow his recommended reduction programme taking you to 5mg in 10th days time, you are likely to have a full blown return of the symptoms which will then prove even more difficult to get under control.

    In the case of PMR, and if the 30mg starting dose controls your pain, you really need to stay on that dose for at least a couple of weeks before attempting a reduction, and then by no more than at 5mg at the most. Then if all goes well, a further reduction to 17.5 and then to 15 can be tried.

    As it appears that your blood test results showed inflammation at the outset, then you should be able to use those tests as a guide as to whether the inflammation is under control before continuing with each reduction.

    Steroids do not cure PMR, they just control the inflammation that is causing the symptoms. Unfortunately there is no quick fix cure and PMR goes away when it wants to, sometimes for some lucky people in a year to 18 months but for others it can take between 2 to 3/4 years.

    Take a look at pmr dash gca dash northeast dot org dot uk (have typed it in this fashion as the moderators will hold on to the post to approve the website if I quote it normally) where you will find a wealth of information about PMR, including the British Society of Rheumatologists' Guidelines for the Management of both PMR and GCA.

    I do hope you will come back and be able to tell us that you feel much better in a couple of days. Then keep looking in an asking the questions and we will all try and answer them from our own experiences with this illness.

    MrsO

  4. You have been given all the right places to look so i wont repeat any of that

    If he recognises it as PMR I dont understand why he doesent know how to treat it ?? You really should only be reducing very gradually Unless you have very high blood inflamatory markers most people are started on 15mg to 20mg

    You really need to do your reading and get back in there to see him next week as you wont have enough tablets to keep you going Take the guidelines with you I hope he is approachable ! Dont be put off though as if you come off the steroids like that you may well have worse pain than before

    Good luck

  5. Thank you very much for all your help .After reading everything it seems he hasnt told me all I need to know and I may need more than the 2 weeks off work. Has anyone an Idea of how long.Thanks.

  6. It really does depend on how you feel Its not really the going to work thats the problem its the 2 weeks to "cure" PMR !!

    As you seem to work long hours standing I would imagine you would find it very tiring Everyone is different and Im sure some people do work with it

    The real problem is if you have PMR you will not recover in 2 weeks 2 years is a lucky outcome but if you have a reducing plan on your steroid reduction you could well go back to work One thing with PMR rest is part of the recovery so you have to be careful not to overdo it

    It is a very invidual illness and it is impossible to say how yours will be Your Dr has definately given you the wrong advice so far There are proper medical guidelines as others have said and they dont say short sharp treatment that is usually given to people with other illnesses

  7. Dottie

    As Mrs G has said, some people do manage to work once the steroids have got control of the inflammation thereby reducing the pain. It really depends on both how you respond to the steriods and to the work that you do - if your working environment is stressful, then that could hamper the recovery process. Some people have a period of weeks or months off work and then return initially on a part-time basis. It very much depends on the individual. I do hope you will be one of the lucky ones and have a smooth journey to recovery.

    MrsO

  8. Dottie

    As Mrs G has said, some people do manage to work once the steroids have got control of the inflammation thereby reducing the pain. It really depends on both how you respond to the steriods and to the work that you do - if your working environment is stressful, then that could hamper the recovery process. Some people have a period of weeks or months off work and then return initially on a part-time basis. It very much depends on the individual. I do hope you will be one of the lucky ones and have a smooth journey to recovery.

    MrsO

  9. hi i will not repeat the info from the other posts suffice to say your gp has got this completely wrong he is not giving you the right info and regime ,please read all you can on the subject and go back to him fully informed .i am 16 months on and still feel totally whacked fortunately i am retired because rest is part of the treatment ,also it has taken all this time to get down to 9mg with monthly blood tests etc ,you will need to be on adcal to protect your bones . come back to us with your ??? because its a bit like walking through treacle at first but getting to know about pmr is the first step in getting control of the situation ,good luck we are here to help carolk

  10. Thank you all very much for your help. I did'nt know who to ask as my Doctor seems to know very little on the subject . From the advice from from you all, I am going to ask to see another Doctor. A very big Thank you.

  11. Dottie - it isn't just another doc you need. You have the directions to get to the northeast support site and you can download the guidelines from the British Association of Rheumatologists for diagnosis and treatment of PMR. Take a copy with you and fight your corner. I had a rheumatologist who gave me a 6 week course of pred, 2 weeks at 15mg/day, 2 weeks at 10mg and 2 weeks at 5mg. Then stop. The result initially was a miracle - regarded by many docs as pretty much diagnostic of PMR - but within 48 hours of stopping the 5mg doses I was worse than before.

    The pred only controls the symptoms, you usually start at about 15 or 20 mg which deals with most cases and then reduce slowly to find a dose that keeps you functional. If you need to work, you will likely need a slightly higher dose than someone who can cope with some pain and stiffness and the pred doesn't always help with the fatigue. It is possible to work - but it depends on the job. I worked for 5 years with untreated PMR. It wasn't severe and I am a freelance translator - I managed despite feeling pretty ghastly at times. Sitting at a computer is relatively easy. It would have been a different matter had I had to commute and then had a physical job to do.

    Good luck - and let us now how you get on.

    Eileen

  12. Thank you that has been very helpful .D.

  13. Dottie, I was diagnosed two years ago and after the initial 15mg of pred was euphoric and able to do thing had not been able to do for months beforehand..... THEN my rheumy dropped me to 10 mg after three weeks..... oh boy! Back to all the horrendous pain and took my doc three weeks to get on top of the inflammation....... but she had to take me up to 20mg to make me comfortable...... I then went down 1mg a month..... have had a PMR flare and back on 10 mg and have just started to go down half a mg at a time...

    This is not a disease you can control with huge jumps...... it is a long term disease which demands slow decreases so as to ensure the inflammation is kept under control......

    It can take anything from two years plus and many I now know many years more to see the back of this disease. Be prepared for the longhaul! xx

  14. Thank you fiftiesgirl. I am now on the last 2 days of pred( 5mg) . The pains have come back and I feel like I could sleep all day. I am going to see a diffrent Doctor tomorrow so fingers crossed for a little more understanding.

  15. Hi Everyone

    Been a while since I chatted to you all tho I read the discussions fairly frequently

    .

    I am now on 9mg of pred - began in Feb on 30mg - tho I can't say that I am jumping around like a spring chicken! Its all a balance isn't it? Between trying to reduce the blessed steroids and putting up with pain that is manageable but still allows for the dog walking and housework etc without having to take things easy for the following couple of days!! As seems to be my pattern.

    The comments that this is a very personal disorder is so true. My doctor's advice to 'play around' with the preds was SO helpful! But we have to listen to our bodies and try to do what is best for ourself. The amount of discomfort that one of us is prepared to put up with will be very different to another person.

    One of my main gripes is that my doctor - she's really ok - still has not really talked to me about PMR and how it all pans out. I got a leaflet from the physio but everything else I have learned from you people and myself.

    I am lucky to live Suffolk and I know there is a very strong support group in Needham Market.

    I recently had a weeks holiday in Paxos and the warmth was glorious. The car journey to the airport and the restricted space on flight did make me more aware of the PMR and an hours walking was my maximum - this from someone who used to take trekking holidays in the Himalayas for fun - but all in all it was great. Shame that the weight gain from the lovely preds made me reluctant to show my no longer sylph-like body on the beach!!

    But I keep telling myself it could be lot worse. So many of you are obviously much more incapacitated than me and I just wish you all lots of positive thoughts and maybe one day when the summer really comes to stay, the sunshine will make us all feel brighter.

  16. wendyanne

    You can do no better that join that support group,. The last meeting they had the Guest Speaker was Professor Bhaskar Dasgupta, world leader on PMR & GCA. Their last newsletter would be worth the joining fee as well.

    Also you could visit pmrandgca stop forumup stop co stop uk

  17. I can't find the original message page I joined asking about pred. and eye pressure problems. (I have closed angle glaucoma)

    Am on 13th day of pred, 15mg, eye check was fine so that was a relief but eye chap wants to check every 6 weeks.

    I take pred. With breakfast 7-8am, I wake around 5am when pain and stiffness start building up but try to hold out before taking pred. Having taken 15mg The pain and stiffness, sometimes weakness take until about 11.to 12 before I start feeling pain free.

    The question is should the dosage mask all pain for 24hours.

    I am due first blood test in a weeks time and rheumatologist on last visit said I may need another drug alongside pred. I am so loathed to take any more drugs but just wanted to know if anyone else found this immobility in the mornings?

    Thanks for reading

    DJ

  18. Hello again DJ

    If you type "Closed Angle Glaucoma" into the "Search" box at the top right hand side of this page, a link will pop up headed "reducing steroids/32 replies/discussions". Click on that link and scroll down to find your first post and all our replies.

    As to your question "anyone else found this immobility in the morning", sadly the answer from most of us will be a resounding "Yes". From my experience, it was mostly a feeling of intense stiffness upon getting out of bed which took a few hours to subside. Some of us have found several ways of trying to deal with this either by getting up really early and taking the steroids with some light food and then going back to bed for a couple of hours, perhaps warmed by an electric blanket in this cold weather. I used to find a warm shower worked wonders although the relief wasn't long-lasting. A delayed-release pill is being trialled which is taken at around 10pm and then released into the body around 2am which it is hoped will ease this early morning problem.

    In answer to your question "should the dosage mask all pain for 24 hours, again sadly not for many of us. Generally, most of us find that we have relief in about 70% of our original pain within hours of taking our first starting dose. There are a lucky few who do become pain-free down through the doses but that wasn't quite my experience - others will be along to share their experiences with you I'm sure.

    I don't quite understand why your rheumatologist has already suggested you "might need another drug alongside pred" - you haven't had the chance for steroids to prove themselves yet! However, his proposed plan of keeping you on 15mg for a few weeks and then repeating the blood tests sounds ideal. It also sounds as though you will be well monitored with regards to your eyes. So lots of good news there. I do hope you will soon start to feel much better but do come back with any queries you may have as there is always someone around who has 'been there done it and got the t-shirt' wink

  19. I too am mystified why your rheumy wants to consider another drug after only 13 days on 15mg! out of interest, what rheumatology department are you under - i.e. what hospital Trust is it? Different rheumys use different times on a dose at the start, some also try a slightly higher dose (20mg) if they don't get the result they want with 15 - but you should be looking at about a 70% improvement in symptoms by now.

    No - some people are lucky and get a lot of relief quickly, others take a few weeks. A trial of different doses in Italy found that 75% of patients got that sort of level of response within 1 to 2 months to 12.5mg, a lower dose but the idea was to se eif you could use an even lower dose than is currently suggested. The effect does build up though - the quite severe hip joint pain I had due to bursitis took a few months but it did eventually go altogether. Again, for some people it lasts all day, through to the next morning - the antiinflammatory effect of pred is between 12 and 36 hours, depending on the person. For a long time I was taking my pred as a double dose every second day and had only minimal stiffness by the second evening. Others find splitting the dose as 2/3 in the morning and the other 1/3 later works well so they have less stiffness in the morning. That is sometimes suggested by the doctors.

    MrsO has suggested a few ways others have also found successful at making that getting going in the morning a bit easier. You will find that if you can get out of bed and start moving the stiffness should improve quite a bit - it's overcoming that initial inertia that is so difficult!! I found gentle aqua aerobics early in the day made the rest of the day much better - and because I knew that I forced myself to stagger to the car to get to the gym!

    She also mentioned the delayed release pill - I take that and find that I sometimes wake about 4.30 with some pain and stiffness but by the time I get up it is gone completely. That is, provided I took it at 10pm, if I am late I do notice it all being delayed a bit! I don't live in the UK though so the doctors have other rules to work by. Judging by my experience it is good - but I suspect there will be a fight in the UK as it is VERY expensive compared with ordinary pred.

    You could try having a yoghurt or sandwich by your bed with your pred tablets and take them when you wake at 5am - it is common for inflammatory pain to be more noticeable at night - and then you could cuddle back down under the covers until it is time to get up properly by which time the pred should have begun to work

    All the best,

    Eileen

  20. Thank you for your replies. The pain is definately not as severe as before taking pred.which is a huge relief but I was questioning if the body could start healing when still fighting pain and stiffness for 4 to 5 hours. before the pred kicks in? I think you are saying the body needs to accumulate the pred and get used to it.

    I was rather fearful of taking the pred earlier as worried it may not get me through the afternoon and eveningsn when life returns to normal, kind of!!

    Hot showers, swimming and walking I am trying to do everyday as movement is essential or I sieze.

    I am also eating masses of sardines and oily fish plus about to start acupuncture. Has anyone found relief from this alternative?

    I know I am so lucky at the help and care I am receiving and am grateful for this forum input.

    By the way I am female 65 (it started on my birthday!) and live SW London.

    Thanks again for your very welcome advice.

    DJ

  21. DJ

    It isn't simple to answer to your question as to whether " the body can start healing when still fighting pain and stiffness for 4 to 5 hours", mainly because there is no cure for PMR and the steroids are purely controlling the underlying inflammation which is causing the pain, and PMR will go into remission when it wants to and unfortunately not when we want it to. As to how long that "controlling" is going on may vary from person to person and their lifestyle - it is very important to give ourselves plenty of TLC during this time to give the steroids the best chance of doing their job. Many of us have learned the hard way that if we overdo things on a 'good' day, the pain comes back to bite on the next.

    It sounds as though you are certainly doing the right things to help - I wholeheartedly believed in my regular intake of oily fish. Of course it didn't cure but I believed it really helped to ease the pain. I haven't tried acupuncture, mainly because my rheumatologist didn't believe it would help, but there again we are all different and what might work for some might not work for others.

    PMR has no respect does it arriving on your special birthday. As for living in South West London, you might be interested to know that I run a support group that meets in the Chertsey area - if you are anywhere around that area I'm very familiar with the journey and I think it would take about 45 minutes to reach the venue. I can let you have more details if you are interested.

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