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Dr had me crying today!

Posted , 19 users are following.

sharon35553
sharon35553

So I go to my Rheumatologist today, getting ready for him to give me my Prolia injection and he informs me that he will no longer treat me if I do not go off the prednisone. He has wanted me to taper by 2&1/2 mil every week and when I got down to 7&1/2 mil I had a terrible flare and went back up to 10 mil without asking him. Today he said that he wants me to taper by the 2&1/2 every three days until Im down to zero and  told him why, Im in alot of pain in the groin and shoulders and when I get to below the 7&1/2 my scalp begins to hurt. He said all of your blood work is normal therefore you dont need the pred any longer. I then explained to him that the Neur Opthomologist thinks I do need to be on it and he then tells me to have him take over my treatments, he was so rude and uncaring and now I dont know what to do. he thinks a year on the red is long enough and even went so far as to say  was addicted to a fake pain reliever. I am so upset and beyond knowing what to do. Needless to say I did not let him give me the injection, I was so angry to be treated like this that I just left. Now what do I do, find another Dr?

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  • susan29426
    susan29426 sharon35553

    Posted

    Oh, Sharon! How awful! Yes, by all means get another Dr. I know it can take time to get in to see a new rheumatologist, but it doesn't seem like this one is doing you any good. I'm less knowledgeable than many on this site, but I do know it's ridiculous to expect you to drop 2.5 mg every three days - especially since you've been on prednisone for a year. Getting to 7.5 is an accomplishment. Are you familiar with the dead slow taper? I found it on this site, and that's what I've been doing. Even so, I have to rest at each level for awhile before continuing on. Good for you for walking out.

  • Kdemers
    Kdemers sharon35553

    Posted

    Yes find another dr.who will listen an d who understands tapering and flairs h ]The dr must know that studies have shown that bloodwork is not a main indicator

    If you have a neuro opthomologist use him maybe because of GCA. He should be able to give you your rx. It is so upsetting to have a dr who does not listen or support you.

    .so sorry

  • kathy67492
    kathy67492 sharon35553

    Posted

    Yes!...find another doctor! I don't know where you live, but you don't need to necessarily see a rheumatologist, you can go to a regular GP...anyone who will be reasonable and deal with your pain. Prednisone is a must for PMR. I have been on prednisone for 3 years...my rheumatologist has suggested trying other drugs and I have refused...but he still listens to me and treats me with the prednisone.

    The people on this forum will offer valuable information to help you deal with PMR.

    Don't give up....lots of people have had to switch doctors over this same thing!

  • RD212
    RD212 sharon35553

    Posted

    Hi Sharon  change your rheumatologist and in the mean time get help from your GP. I wish you all the very best

     

    • sharon35553
      sharon35553 RD212

      Posted

      Thank you so much, I wish you the best as well!
  • linda17563
    linda17563 sharon35553

    Posted

    I had to do the same thing.....I went to my GP, who sent off for another Rheumie appointment, I said I wanted a second opinion, which many people do and you are entitled to....but I have come to the conclusion after reading your and many other posts....there is no protocol they have to follow, and they all have roughly their own way of doing it.....but his certainly isn`t right!

    My husband seems to think if they have letters after their name they know what they are doing......not me....had too much experience with it all....

    ​Good luck.....

  • pauline36422
    pauline36422 sharon35553

    Posted

    hi sharon     wow  thats far too quick reduction.  no wonder you are taking 2 steps forward and 1 back...  i have been on pred  5 ish  years,  never had a rhumy.  my gp and myself   have sorted it out  between us.   and thanks to this forum. we are both guided.    when i go  see him i tell him  how i feel. and sugest what i read on this forum.    then he follows   he is willing to try what ever i say.

         but he has sugested  i get off pred in the next 2 months.  i am down to 1.5 mils

    but if i am not happy at anystage   i know i can  adjust it       yes try a new doc xxx

     

  • EileenH
    EileenH sharon35553

    Posted

    Find someone who knows a bit more about PMR and GCA - the chances of being off pred in a year are minimal and that is said in ALL the medical literature and textbooks. UP to 4 to 6 years is the usual figure - I've never understood why they get so fixed on 2 years to be honest.

    I'd also suggest he knows very little about endocrinology and using pred longterm either - after a year on pred you need to reduce FAR slower than than that to avoid an adrenal crisis. You can reduce that fast if you are using it for RA flares and are just on it for a few weeks - long term use is a very different matter. 

    Of course your blood results are normal - that doesn't mean the PMR/GCA has gone away, it means you have been on enough pred to prevent the body producing the proteins that raise the markers - although it doesn't actually mean that is enough to prevent GCA flaring. There have been a few patients on the forums recently meeting the same problem.

    In the meantime, go back to your neuro ophthalmologist and explain your problem. Why can he not manage you? If it is GCA you have it isn't uncommon. Whatever - don't stay with the other. If it were in the UK I'd suggest you put in a complaint but I know it isn't so easy in the USA. He is trying to put you at risk of first of all an adrenal crisis and second a flare of GCA - and at the very least was rude and unprofessional. Absolutely unacceptable.

    • sharon35553
      sharon35553 EileenH

      Posted

      HI eileen, I am doing exactly as you suggested and awaiting Neuros response. He is totally on it and he even suggested a new medicine calledTocilizumas, have you heard of it, he is up on all new studies as well and said this drug has had good showings.
    • sharon35553
      sharon35553 EileenH

      Posted

      Eileen hi, Im doing exactly as you suggested. Have you heard of a drug called Tocilizumas? Neuro Dr said its been very promising and when he wrote it down for me to show the Rheumy the crazy Dr said you dont need that, I dont even think he had heard of it.
    • EileenH
      EileenH sharon35553

      Posted

      Tocilizumab/Actemra has already been granted Breakthrough Therapy status for GCA by the FDA last October. Genentech is providing some funding and some insurances cover it when administered in hospital. If your neuro is confident what you have is GCA then discuss it with him - the first results for the Giacta study have been published and they were good. They are now waiting for the long term study- it induces remission but they don't yet know for how long nor is there much about exact doses etc I suspect.

      The crazy guy has probably heard of it - it is used for RA and has been for some time so there are no further general safety tests required. It is new for GCA though so we'll grant him a bt of slack!  Anyway - he may have done you a good turn smile

      Used well pred can do a reasonable job - but it does have to be used properly!!! On the other hand - if tocilizumab lives up to its promises it will likely be better - and it does look as if it will shorten the process. Fingers crossed!

    • sharon35553
      sharon35553 EileenH

      Posted

      Oh my thank you so very much Eileen, I swear you are so much more logical and definitely more knowledgeable than this crazy cold fish of a man who calls himself a Dr.!
  • reggie92967
    reggie92967 sharon35553

    Posted

    Fire him, 1rst look on line for any Dr. close enough that treats Polymyalgia, & PMR. If some of these idiots had a tenth if what some of us put with having PMR maybe they'd be a bit more sensitive, empathize more. I drive to Chicago every 3-4 months, to see an incredible, caring, quite famous Rhuematologist, way worth the 5-hour trip.

    • reggie92967
      reggie92967

      Posted

      Added note: My SED & CRP rates often show in the just normal range, my family doctor also mang. my PMR in between Rhuematologist visits & drop my prednisone sometimes by just 1/2 mg. a week, very slow. Nothing worse than a prednisone withdrawal reactions.

    • sharon35553
      sharon35553 reggie92967

      Posted

      I agree and I also have normal range results. I will also try the slow taper once I get setteled with new Dr or my Neuro Opthomologist if he continues to take over my treatment. My primary is another jerk who wants me to try new drugs which are even worse than pred.
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