Should I obey the doc or do the slow method like I want?

Posted , 11 users are following.

Dear People,

I goofed and my story is listed as a reply to the discussion, when I should have indicated "start a new discussion." Sorry about that.

I'm hoping to hear from anybody who will read what I wrote as a reply to the current discussion, and give me some feedback--

Also, advise me: am I obligated to get back to this rheumy and tell him what I'm doing, that is, the slow reduction that he is not in favor of (although he gave no reason). As a patient, I don't want to be too obstreperous, but still, it's MY BODY and I'd best remember that.

All your ideas will be very gratefully received--Barbara

0 likes, 15 replies

15 Replies

  • Posted

    Which discussion was it in Barbara? There are many 'current discussions'. Maybe you could copy and paste it here so we don't have to find it?

    My personal opinion on pred reduction is only YOU know how you are feeling and coping. Drs are not gods. Sometimes they have no clue what they are talking about.

  • Posted

    Barbara your doctor suggesting reducing 1mg a month when you are currently on 4mg seems a bit over optimistic. Are you stable at 4mg? I personally would go for the slow system. The aim is not to get to zero, but to contain the inflammation at the lowest dose possible by taking steroids until the PMR goes into remission. I suppose you should tell your rheumy at your next appointment what you are doing, they do need to know that information.

    I have very swollen ankles and feet. I have leg and foot massage which is lovely though.

  • Posted

    I am of the opinion that while it is true some docs really don't get it, if you are going to be under their care, you should have a frank discussion and then, if you still don't see eye-to-eye with them, you should find a doctor you respect.  It really does no good to fight with a doctor and the doctor can do you no good if you have no faith in them.  I am so happy to have my current doctor. She doesn't discount my symptoms, is honest with me, and always checks in very completely about my blood work and symptoms before she decided to have me reduce. I had a HELL of a time with my first rheumy and my former internist for that matter (just get more exercise, that is why I was stiff!  Ha!).  I am a woman and have other issues and I do think there are many doctors who discount symptoms of 1-women in general, 2-fat women, and 3-anyone who has ever had an anxiety or depressive disorder. That said, there are some comassionate and competent health care providers, but you may have to really work to find them!  Best wishes!
  • Posted

    the reduction can only be up to you as you are the one with the pain.

  • Posted

    It seems to me that the slow method helps one reduce by 1 mg about every six weeks, doesn't it?  So not so different than what the doctor says.  

    BTW here is the text of your reply in the earlier post, hope this helps:

    Hi,

    I have had badly swollen feet and legs almost from the beginning of PMR in my case.

    A couple of days ago when I saw the rheumatologist for a 3-mo. visit I asked him about this. He said the swelling had nothing to do with having PMR, but I find that hard to believe. At my age, 84, some swelling is certainly not unusual, but what I have is so bad I can't wear normal shoes.

    I am at 4 mg. The doctor volunteered that I am at a dangerous level--that ata 4 and below, the body tends to rebel greatly about any more reductions and, he said with a smile, "you might have to go back to 10 mg. or something..." 

    I asked what he thought about the very slow reduction method and he said "I wouldn't do that--just keep doing your 1 mg. per month like you have been." No further explanation.

    • Posted

      He should have given you an explanation and I would go back and ask him for one and then tell him you are not going to drop anymore until he sends you for a  Synathecen Test.  The last thing you want is an adrenal crisis.

      Your adrenals glands have been asleep since you were on pred for longer than two or three weeks.  During the time you were on pred, you were getting older.  It could be, and I am not saying it will, that your adrenals glands will not wake up and 4mg is not enough if they do not wake up.  More like 5mg per day.   You need a Consultant Endochronoloist for this test and it is simple and painless, just remember to take a book with you as it can take up to 4 hours.

      I had a test after being on pred for 5 yeasr and I was still on 3mg of pred, I found out later that I could have had this test at 7.5mg and below.  My adrenals were fine and I could stop the pred.

      I also think anyone on longterm pred should have this test at 7.5mg and below.

       

    • Posted

      This reply was meant for Babara - I found her original post for her!
    • Posted

      Ok, I see,  I can only hope that Barbara reads that reply.

       

  • Posted

    Why would 4 mg be regarded as "a dangerous level?"
    • Posted

      According to the doc, at around 4 mg. the body tends to rebel

      or "act up" at the very low level of pred it is getting, and (I guess)

      cause a lot of pain as you try to reduce further.

  • Posted

    my instructions from my doc was self adjust....as your body will let you know whats happening and when it is ready..
  • Posted

    gail i dont  the doc ment dangerous in the sence of the word. i recon he ment dangerus as in   could have  a flare  more easily    ithink
  • Posted

    good morning barbara. i am one of the lucky ones now of pred useing the slow method of reducing.at 4mg i reduced 1/2mg over a long period.to me it woudl not be very wise to reduce to fast at this stage and have to go back up.i think you need to really try hard to get your doctors on board.good luck&best wishes .Dave.
  • Posted

    Ask your GP for a Synathecen test, a referral to an Endochronologist Consultant.  You don't need to see the Rheumy for this test and anyway if you are in the UK, you have to be referred to a Consultant by your GP.

    This test will tell you if your Adrenal glands have woken up and are working correctly.

     

  • Posted

    Thank you, thank you, to everybody who responded to my last input!

    You are all so helpful!

    I decided to go ahead with the SLOW reduction and have written the rheumy what I think is almost the world's almost most polite, 

    appreciative note to let him know.  If there should be fireworks, I'll just have to find another doc.

    Thanks again, everybody--

    Barbara 75814

     

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