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Knowing too much

Posted , 14 users are following.

richard07199
richard07199

Since this is a new topic (for me at least), I didn’t know whether to tack it onto someone else’s discussion or open a new thread.  So here I am.

It seems to me that most of the people who participate regularly in this group probably know at least as much, and probably more, about PMR than your everyday general practitioner.  For me this group has been a great source of practical knowledge.  I have studied as much as I can about the condition on the internet, and even have a copy of Zuckerman and Inglefinger’s book “Coping With Prednisone” on my bookshelf.

I will be seeing a new GP next month.  My question is:  How do I interact with this new MD without coming across as a know-it-all?  I don’t want to appear as intimidating.  I’m going there for help.

For instance, it’s a good chance that your everyday MD has not read the 2017 Mayo Clinic study that knocks over a number of sacred cows concerning PMR treatment...I have (thanks Elaine).

So, bottom line, how do I handle this first meeting?  I’m sure many of you have faced the same situation.  What is your experience?

2 likes, 26 replies

26 Replies

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  • rich38490
    rich38490 richard07199

    Posted

    Hi Richard,

    I started this journey back in July after 3 months of misdiagnoses and a lot of pain. My RA initially put me in 10 mg of Prednisone.  Wasn’t enough, I went from 10 to about 7 in terms of pain. 

    Next visit I asked for 15 mg. She said she was going to put me on methotrexate instead.

    Based on my knowledge gained from this group, I just said “no”.

    She increased the Prednisone dosage to 14 and I’ve been pain free. I will start tapering on my own in a couple of weeks. 

    It’s touchy, but you’ve got to be firm and if it doesn’t work, find a new doc. 

    Best wishes

    Rich

  • amkoffee
    amkoffee richard07199

    Posted

    I think whenever you want to ask a question you should start your own thread. When you tack it onto someone else's you're essentially hijacking their question. At least that's the way I see it, I get pretty annoyed when people do that to my questions. In fact the last question I asked this group ended up going on and on and on with subjects completely off Target from my original question. Which would be fine if I didn't get every single email about every single answer. And I do know I can go in and select to not follow the discussion anymore. And I did have to do that with this one it was so bad. Okay I'm done complaining now.

    I'm going to answer your question with a question. Why are you seeing a GP for your PMR instead of a rheumatologist? So I think that you need to treat this GP in the same way you would treat a friend that also knew less than you did about PMR. You can't expect a GP to know as much as a rheumatologist would about PMR. That's not to say that all GPs know little about it but it is not their job to know the details of that particular disease. It is their job to be able to recognize the disease and refer you to a specialist for treatment. That's why Specialists exist. They can get down to the nitty-gritty details of whatever disease(s) they specialize in.

    • constance.de
      constance.de amkoffee

      Posted

      The trouble is amkoffee a lot off rheumatologists don’t take PMR as seriously as other bone problems.  Some seem to have very little knowledge of on-going/long term PMR (“ here take this - MTX and that will deal with the PMR”)  -  it doesn’t!!  I have had FAR more help from my doctor than any of the 3 rheumatologists I have seen.  I’m in my 6th year and still suffering (4mg).
    • amkoffee
      amkoffee constance.de

      Posted

      That really is a shame and very bad luck to have seen rheumatologists and none of them being helpful. Why are you seeing a new doctor if your old one was so helpful? If you live in the US you might want to consider using a website called Health Grade. There you will find doctors that have been critiqued by patients that they have seen. That's how I found my rheumatologist and she is incredibly awesome. It is also how I found a podiatrist who was incredibly horrid. I should have heeded the reviews of other patients of hers.

    • constance.de
      constance.de amkoffee

      Posted

      I don’ know where you got the idea that I had a new doctor.😏  I have had my doctor for 27 years - the same one, always.

      I live in Germany, where I can see specialists at any time I like (with consent of my doctor) all on the national health system.  So far, we cannot fault the attention we get.

      Rheumies are somehow on a different level, they seem to take the American idea that PMR lasts about 2 years (with the help of MTX).  Though none that I have seen seems to have read the Mayo clinic experts on PMR.

    • Anhaga
      Anhaga amkoffee

      Posted

      Most of us, depending where we live, are actually treated by a GP rather than an rheumatologist.  The specialist is brought in for GCA or if the PMR doesn't respond adequately to treatment.

  • Silver49
    Silver49 richard07199

    Posted

    I am in the UK and have been dx with PMR for over 3 years now. I  have never been referred to a rheumatologist and have always been managed by my GP who has more or less left me to it. I am now on 3mgs though I did get down to 1.5 but pain started to return after about 2 weeks so had to up my dose. There are people on this forum who will be able to advise and it may be that your GP will welcome you arriving with some relevant information especially as they don't have much time to give at appointments. Others will be along with advice. I think many GPS recognise the difficulty of getting off steroids so when we reach a low dose they are not so concerned. I am fortunate in that my GP knows my circumstances and the stress I am under so doesn't push me to reduce and realises the difficulty. It's about mutual respect which is easier if the GP knows one. If you have difficulties with this new GP can you move to another? Hopefully, it will all work out but can understand your concerns. Best wishes

    • ptolemy
      ptolemy Silver49

      Posted

      Dear Silver, you are lucky having a good GP. In fact there is normally no reason to go to a rheumatologist if you have just PMR and a lot of people do not. I think GPs send people to rheumies if there is a particular problem or they know nothing about PMR and panic, so can hand over the problem to someone else. Some GPs also want their patient to go onto Methotrexate or similar but they are not allowed to prescribe it, so they need the rheumie to do it for them.
    • Silver49
      Silver49 ptolemy

      Posted

      When I read of the difficulties of others on this forum I appreciate how fortunate I am, Ptolemy. I didn't know that Methotrexate can only be prescribed by rheumies. It's hard enough coping with PMR sometimes without the added stress of a GP pushing to reduce the dose quickly. The extra stress from this pressure won't help PMR to go in to remission. One of the nurses at our practice told me that her father had PMR and it was 4 years before he was off Pred. At least there is some knowledge around and we have a number of new, young GPs. Perhaps it helps as it seems to be more of a partnership. I only ever go to 2 of them and both are very good. 

    • EileenH
      EileenH Silver49

      Posted

      mtx must be initiated by a specialist - then it can be prescribed by a GP.
    • Silver49
      Silver49 EileenH

      Posted

      I learn something new everyday. For all the time I have been on this forum I hadn't realised. Thank you both for the info.

  • kate50809
    kate50809 richard07199

    Posted

    This is a very tricky one!  I have found some GP objects quite strongly to us knowing things for ourselves. I thought this paternalistic approach would have died a death by now but I am afraid it is still out there. 

    I'm not sure where you are. I am in the UK and our first step is always our GPs who refer us on to specialists as and when they see fit!!

    Fortunately I have quite a good relationship with my GP and he appreciates me taking responsibility for my own health and trusts me to use some common sense when searching the internet. He has refered me to a rheumatologist though, who I have seen once and I am not sure about his attitude yet.

    I was on 10mg of pred when I first saw him and he has instructed me to reduce by 1mg every month so I am now on 9mg with no problems.

    Having taken in all the advice from people here I know that when I get to 8mg continuing to reduce at 1mg a month might prove too much and I will want to go slower. I am worried about this as I don't know how the rheumatologist will react. After all "he(she) who writes the prescriptions calls the tune!!"

    I was diagnosed in the spring this year so I am quite new as well.

    Good luck with your appointment.

  • EileenH
    EileenH richard07199

    Posted

    Hasn't ever been a problem for me - but last year when I went to meet a new rheumy here in Italy I turned up with the PMR and GCA book he edited. And we found a whole load of people we both know and have worked with in the PMR world in the UK. So I suppose I cheated!

  • Michdonn
    Michdonn richard07199

    Posted

    Hi Richard, I would listen to everything the doctor has to say. I would also have my articles and book with me. If they say something you disagree you, try to explain why and have the information available. So far my bone of contention has been tapering, so when disagreeing with my Rheumy I have had my information with me. Currently I manage my tapering. Good luck try to stay active, positive and smile. ☺️
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