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HAPPY EASTER everyone and then 'Guidance' please.

Posted , 6 users are following.

constance.de
constance.de

I did a daring thing yesterday - I uped my pred from 7 to 9 - that's the first time I have done that, off my own bat, in all the four years!

I have been hovering around 6/7 for a few months, but I have never really got rid of the pain.  I put up with pain.  So many people have the most awful, incurable, illnesses that I feel guilty moaning about my discomfort.

The thing I want to know is:  how many of the a-typical PMR patients on this forum have similar difficulties after so long.  My blood results yo-yo, never completely in what is considered the 'normal' range.

Thanks, in advance, for any advice.

Constance

0 likes, 19 replies

19 Replies

  • margaret22251
    margaret22251 constance.de

    Posted

    i Take care, and happy Easterthe same thing on holiday, went from 10mg to 7.5 on docs advice, but i paid for it, so went back to ten told doctor, she agreed.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey constance.de

    Posted

    Constance, I was never completely pain-free down through the doses.  As long as you have learnt along the way to recognise steroid-withdrawal pain as opposed to the pain of rising inflammation (also guided by repeated blood tests), and you are following one of the slowly slowly reduction plans, you should eventually find that you are able to reduce successfully, at least to around the 5mg point - a sticking point for many.  I was advised to remain at the 5mg dose for 5-6 months the second time around following a flare that had required returning to 10mg to get it under control.  Perhaps you need to stick at whatever is your most comfortable dose for a longer period of time, be it 7 or 8mgs, before trying to reduce further.  You might then find that both your pain and your blood tests stabilise.  But first of all you need to increase to a dose that gets complete control first - hopefully, your increase to 9 will achieve that.  Good luck.
  • EileenH
    EileenH constance.de

    Posted

    I suppose I did for the first couple of years - got 9mg and was fine, 8mg just wasn't but the emphasis was always on reduction so it was down and up, down and up. Then I had a major flare - I obviously just didn't respond to Medrol, it simply didn't work for me except for nasty side effects, no desirable ones. Since then I've used the slowly slowly approach and as soon as it hurts went back to the previous dose and tried again later.

    I'm at 4mg now, been down to 3mg and an ache came back so I went bact to 4mg. Pretty much pain-free there. The question now is whether the PMR is (nearly) gone and it is just getting rid of the pred. I do feel different somehow although I can't really explain it.

    • EileenH
      EileenH

      Posted

      Should have added - a lady GP on another forum has developed PMR herself. She always pushed "Reduce, reduce" - now she has it herself she asked whether there really is so much difference between 8mg where you feel good and 7mg where you don't. Is that 1mg more so bad in the great scheme of things? She now sees our side - and thinks saving 1mg for the sake of being on a lower dose isn't worth it.
    • pauline36422
      pauline36422 EileenH

      Posted

      eileen what do you mean  getting rid of the  pred.  because  my little  bit of  pain is  differant   than   the original pain.    not  joint  pain as before

      more a little achy.     but my knees are   not   good   but i think that is a bit of  athritis. as 10 years a go i took  celery  seed    as i have  explained  before and  the pain went. so am a bout to go back to  that,  give it anothere go.    you did say   why not eat celery instead.    not that keen lol

    • EileenH
      EileenH pauline36422

      Posted

      I meant I don't know if the PMR has really gone and if all I have to do is reduce the dose of pred to get off it. Reducing your pred dose to get off it because you haven't got PMR any more still has to be slow but it isn't as fraught as reducing the pred to find the lowest dose that manages the symptoms. Does that sound clearer?

      One lady on another forum has osteoarthritis and her GP was adamant that the pain she had was OA so she should be using paracetamol rather than sticking with her very low dose of pred. Paracetamol really didn't do her liver any good (raised blood tests that made her GP panic) so she had a hip replacement done and then reduced steadily - a few people have found it easier to reduce once a hip has been done. Maybe the pain aggravates the PMR since it is stress. Now she just has some hand pain I think - which was better when she was on pred.

      So yes - if the pain you have is definitely different from PMR pain it isn't a good idea to increase the dose just to be comfortable - I just mean it when it is PMR pain that isn't being properly managed with the dose you are on. Lots of people expect to be back where they were pre-PMR, forgetting they are a few years older and probably not as fit either.After all, everybody has the odd ache or pain, PMR or not.

      It was MrsO who commented why not eat celery - I'm with you, dislike it intensely! Not sure which is worse, celery or green peppers - love red, yellow, orange whether they're raw or cooked. Green - why pick them? And the bags of peppers almost always have a green one in!

    • MrsO-UK_Surrey
      MrsO-UK_Surrey EileenH

      Posted

      I now have a lady GP member of the support group and I commented that at least she probably had an idea of how to treat/help herself - she said she didn't and was now the patient not the doctor.  A lovely lady.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey constance.de

      Posted

      Yes, Constance, we mustn't forget the lovely men both at home and on here - I hope we'll be forgiven if we don't mention the male contributors here too often - they are in the minority as PMR doesn't strike anything like as many men as us ladies, but they are just as important....and just as "lovely"!smile
    • constance.de
      constance.de margaret22251

      Posted

      Poor Margaret, we do feel for you - those who have understanding husbands, familiies, etc. I mean.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey margaret22251

      Posted

      Oh Margaret,poor you. I'm sure he must have some good points.  Wish I could share mine with you - I'm blessed.
    • margaret22251
      margaret22251 MrsO-UK_Surrey

      Posted

      Hi MrsO, yes my hubby has a lot of good points, its just cannot get him to talk about my illness, But today he asked me why i write in my black book, i said the doctor asked me to keep a diary of my day and what my sypmtons are, and i asked him to ask his chemiost friend on Tuesday some questions for me and he said he would, i am hoping Lawrenece will wxplain to him, so fingers crossed.biggrin
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