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Really helpful PMR Forum

Posted , 7 users are following.

suesing
suesing

Hi fellow sufferers!

I am so glad that I have found this forum, because reading through some of the discussions, I feel a little reassured that I am not alone in experiencing the affects of both the PMR and tapering of Predisolone.  

The biggest problem I seem to have, is the attitude of my GP, who I think like many others, don't really understand PMR, or tapering of Prednisolone.  I was diagnosed with PRM last May, after suffering with it for months before.  I started on 20mg of Pred' reduced quickly to 17.5 and 15mg and then by 1mg every 4 weeks, religiously since then.  I am now down to 5mg, but have been struggling with some really bad days, especially more recently.  Over time I have worked out for myself that there is a relationship between this tapering and how I feel but all my GP is concerned about is that the inflamation is being kept low and getting me off the Pred' as fast as possible. He also insists that I should not be experiencing any PMR symptoms at all while the inflamation is being kept in check!

I recently had a check up at Rheumy' and the consultant said I should now reduce the Prednisolone more slowly, especially in view of me experiencing such dreadful fatigue, headaches, hot flushes, and those particular PMR pains etc, but my GP still argued with that.  I am of course taking the advise of my consultant.

At least I now know that I am not alone in experiencing all the various nasties and I can tell my family that I really am not going mad!......oh...and I think....tell my GP where to go!

 

5 likes, 6 replies

6 Replies

  • EileenH
    EileenH suesing

    Posted

    If you haven't already seen this thread 

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    have a look at some of the other links. There are other forums and they have support groups if you are interested - depending on where you live at least. One link listed is the "Bristol paper", which you can view and read - and maybe print out and hand to your GP and suggest he read it as it is written for people like him to improve their knowledge about management of PMR. Yours needs it!

    If you are down to 5mg after a year and have symptoms I am not really surprised! Nor am I surprised that you have such dreadful fatigue at this dose - your adrenal glands need a chance to catch up and one top PMR expert likes to keep his patients at 5mg for up to 9 months before continuing the reduction to do just that. For some people this stage arrives sooner - but if the GP ignores the consultant you are at risk of not only a full-on flare of the PMR, requiring a return to at least 10mg, but also being ill due to adrenal insufficiency - for which you need more pred! 

    As I'm sure you have already gathered from the site, PMR has a mind of its own - and your GP can try to force a reduction all he likes, it won't work. PMR came when it wanted too, it will go when it feels like it and at the moment all we can do is take pred to manage the pain and stiffness to allow a decent quality of life. As long as the autoimmune disorder that causes the symptoms we call PMR is active you will need some pred - it hasn't cured it, it is managing it. Ask your GP if he would tell a patient with high blood pressure to stop taking the pills because their BP was now down to normal? He knows what would happen - the BP is being controlled by the pills. It is the same with PMR - the symptoms are being controlled by the pills. 

    And the obvious question if you can't train this one - do you have the option of a different GP? 

  • janet08828
    janet08828 suesing

    Posted

    Poor you - your GP sounds like hard work - and honestly - on top of everyhting else - who needs that?

    By the sound of it (reading your last comment) you have the possibility of changing your GP - I think that sounds like a good idea.

    Good job you have an understanding consultant.

    We are many who share your relief in finding this forum, when I found it it was like a weight being lifted off my shoulders.

    Good luck - hope you find a more understanding GP

  • tavidu
    tavidu suesing

    Posted

    Hi suesing,

    Like you I have had PMR since last May and started off on 15mg, then up to 20mg and finally 25mg before all the pain went. Even now I am only down to 14mg and have had one flare (due to my doctor who also did not understand PMR). He now allows me to self medicate and keeps his nose out of it unless I have a problem such as a recent attack of Hives. You have done really well getting as low as you have but it does seem rather quick as eileen may point out. You are in the right place on this forum for getting advice so use it regularly. Good luck, Dave (tavidu)

  • Oregonjohn-UK
    Oregonjohn-UK suesing

    Posted

    Sound a familiar story - so welcome to the 'club' we all don't really want to be a member of!  Eileen advice is sound and I would only add, take it slow but sure regardless of what you GP tries to say.  If you are using 5 and 1 mg tabs (cutting the 5 in half) you could try reducing by 0.5 over an extented period as per Eileen link.

    Best of luck - John

  • paddiwhack
    paddiwhack suesing

    Posted

    What a sheme that you are not getting the support you need from your GP

    I too am delighted to look at this forum as I am awaiting confirmation of diagnosis today and after nearly three years I'm feeling partly relieved that someone is listening and anxious at the same time.

    I wish you well . Keep listening to the rheumatologist smile

  • suesing
    suesing

    Posted

    Thank you all for your comments, which all seem like common sense to me, especially as we all have first hand knowledge of managing this condition.  I did see another GP, but guess what? she said the same and armed with very little information and not knowing anyone else with PMR at the time, I thought I better follow their instructions and put up with the discomfort.  It could be a problem within the whole practice, so I think I might as well stick with my present GP, be more assertive and try to enlighten him, so that hopefully he can be more helpful to other patients in the future.  Thank you Eileen for the information on the 'Bristol Paper'.  I will have a look at this and pass it on to him.

    I wish all of you well with managing your PMR and reducing your Prednisolone and hope that you all eventually make a good recovery.

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